The Life and Times of a Woman on a Mission

We'll be back...

2010-02-16T00:44:00.003-05:00

I wanted to write a post just to let everyone who has been following that we are still here. Lately, I guess I just haven't had the inspiration to blog. I have been on Facebook quite a bit, and I have been keeping up with all the kiddo's we love.

V is still doing well. There has just been so much happening with the family and I've honestly been exhausted.

I don't get much relief from posting about family stuff. Anyone who know the family we live near would understand. They are about as dysfunctional as it gets, and I have enough trouble dealing with it once let alone reliving it in writing.

I have appreciated all the support that everyone has offered through your wonderful words of encouragement.

Don't misunderstand, I have every intention of returning to the blog. I am simply in need of a break. I'll keep following, and I hope that when the time comes you will all come back to us. Hopefully that will be soon. I do miss the awesome friends I have made through this experience. That is why I still keep tabs on you all, you mean so much.

Until then...

Finally a Reprieve

2010-01-24T21:05:00.003-05:00

Today we decided that enough was enough. We took the kids and headed out for something we rarely get to do anymore. We had a day of adventure.

Lately money had been very tight so alot of the fun extras we used to indulge in have had to go, but today we needed a break, so we went ICE SKATING!

It was an absolute blast! I haven't been since I was a teenager, and the little kids had never been before. I was amazed at how quickly they picked it up. There was the obvious first time death grip on the wall when they first went onto the ice, but after a fall or two they loosened up and started to have fun.

They even had a pair of little bitty ice skates to fit V! He eventually got to where he could stand and even take a step or two off the ice, but as soon as we hit the rink his feet went crazy and he turned into dead weight. Everyone we passed said he had the biggest smile though. So it was all worth it. Every time we took a break to sit and rest all he did was point to go back out on the ice. He really enjoyed the music and jammed out the entire afternoon. I so wish we owned a camcorder!

We all had pizza and even got a tray of cupcakes from a birthday party that was there. After the public skating was closed we got to stay and let the kids watch the zamboni clean the ice while a hockey team got set for practice.

Today was a good day, hopefully just one of many more to come.

p.s. We did manage to get some cell phone pics and I will try to get those up soon. I know I still owe you all holiday pictures too!

I am soooo tired....

2010-01-23T21:09:00.003-05:00

That about sums up how I feel right now.

To add insult to injury, last night we were told by the case investigator that "C" also has a broken arm.
Could it get any worse???

I did talk to his father last night and he's already retained a lawyer in an effort to get custody as soon as "C" can safely be discharged from the hospital. Now we're waiting for our background checks to clear with he judge on Monday to hopefully allow us temporary custody of "L" and get her out of the foster home.

I hate waiting...

In the meantime, "C" and "L" 's mother has chosen to stay with her boyfriend and continue to live in the house where the incident happened...

... she's on her own. How do you help someone who doesn't want to be helped? Easy, you don't.

Our energy is completely focused on making sure those children are never sent back into that place ever again, and if need be, to a mother who would let this happen and protect the one who did it.

*sigh*

What Now?

2010-01-21T00:04:00.005-05:00

Well, true to form I am well behind, but not that I've forgotten. Not by a long shot. I'm still needing to upload all those warm, happy holiday photos.
It's just that as to be expected in my world, nothing stays smooth for long...

Fortunately it's not V, or any of us for that matter.. whew...

UNfortunately, it is my neice and nephew. My somewhat mislead (to put it mildly) sister-in-law lost custody of her two kids this past week due to a case of suspected child abuse. My 8 month old nephew is currently residing in the ICU due to "extensive bruising over his entire body, multiple rib fractures, free floating fluid intra abdominally, and fluid on the brain due to suspected intentional trauma."

*sigh*

My neice is 4 and we were able to collect her from her Mom at the hospital before the fireworks started. We had NO idea what was about to happen since she hasn't been a frequent visitor to our home in several months. She called out of the blue last week asking for a ride to the ER, and then it all began.

"L", my neice, looks to be in good health which is one good thing. She came home with us willingly and enjoyed a night of pizza and movies as her little brother was scanned head to toe and their mother was grilled by DCF and sheriff's deputies as to the cause of his injuries. Apparently she wasn't much help, and during a court hearing today she officially lost custody of them both for at LEAST the next 6 months.

The night this happened, after we put the kids to bed, a DCF worker showed up at our house and took "L" into foster care until the preliminary investigation is over. We immediately offered ourselves as caregivers. For now we're being background checked and home studied.

She and my nephew "C" have different fathers, and "C"'s father has shown an interest from out of state, that he's willing to take custody of him when he's able to be released from the hospital, but we'll see. If need be we'll take them both.

For now, until all the preliminaries are handled, and a permanent caseworker is assigned, no one can have any contact with either of them. It's maddening. We can't even call to check on how the baby is doing and we had NO part in any of this. "L" is in a foster home.. somewhere in the county.. and we have no way to find out where until next week. As hard as this is, we do know that "C" is being well cared for, so our immediate push is to get "L" back here with us as soon as possible. If everything goes the way we're hoping we may be able to take temporary custody of her by the end of next week.

How can someone be so irresponsible with something so precious ???

This is such a nightmare....

Two Years Ago Today...

2010-01-19T13:17:00.003-05:00

January 19th 2008, at 11:22am, his heart stopped beating.. and our world would never be the same.

Julian Michael Avery
5/12/03 - 1/19/08

Rest In Peace King Julian... nous t'aimons lil man........

Seriously, we're still alive...

2010-01-10T23:33:00.002-05:00

I feel badly that I've been neglecting the blog these past weeks. First it started with my being horribly sick. Fortunately that's finally coming to an end, and thankfully, somehow, I was the only one who caught it.
Lately it's more just things happening here at home. Nothing too new really, and nothing with V or the immediate family, but with the extended family we share our property with.
Sadly, as much as I would love to vent and ask for some advice, I just can't bring myself to write about it. It's something I never though we would have to deal with and something that throws me completely out of my element.
My biggest priority of late has been to keep the kids from being affected by it and that will continue to be my struggle until we somehow get this resolved. Ultimately if we can't put an end to this it will mean that we are going to have to leave the home where Carmen spent his childhood behind, possibly for good.
The "how" is our conscern with very little, other than unemployment income. Needless to say it's been a pretty stressful time. This has been brewing for a while and sadly we were wrong in the hopes that those with the power would put things right.
Ugh...
I know I'm ranting about a subject I refuse to even write about.. thanks for putting up with it...

As for us, I honestly haven't even uploaded our Christmas or New Years pictures yet. I've been slacking.
I do plan to do it soon and when I do I promise I'll share. Thanks for staying with us and hopefully it will all be worth the wait. We did manage to have a happy holiday and the kids had a blast!
God Bless.

Succumbing to the crud...

2010-01-02T01:32:00.003-05:00

Still here... still very much sick...

I'm not exactly sure what I'm fighting off, but a lack of medical insurance isn't helping the process any. So for now I'm continuing my vigil of vicks vapo rub and robitussin. The biggest battle of the moment is to keep this nastiness from spreading to anyone else. So far I'm winning that one, thank goodness. Whatever this is.. it's NOT pleasant. Hense the lack of photographic proof of life.

Hopefully soon I'll be back to myself and I can finally share our Christmas, and now New Years with you all.

Thanks for hanging in there and for all the well wishes!

Still here...

2009-12-28T19:03:00.002-05:00

Sorry I've been neglecting my poor blog lately. Ever since Christmas Eve I've been fighting some kind of relentless monster bug.
The kids had a pretty good Christmas overall, and even got a Wii shipped with lots of love and packing peanuts from Nana all the way from Hawaii!
They have had a blast (V can even play!) and it's been a nice distraction for them while I try to kick this nastiness settled into my chest.
We got lots of pictures, and as soon as I feel better I'll upload them for everyone to see.
Until then...

cough.. cough.. gag!!!

We did it.

2009-12-21T16:00:00.003-05:00

Well the EEG excitement is over for now. We had a super wonderful night last night trying to keep V from getting too much sleep. That combined with not being able to eat was a real treat, to say the least, but we made it.

When we arrived at the hospital this morning I was fully expecting that he would readily konk out, but true to form my boy has to do it in his own way. They gave him the chloral hydrate and half an hour later he was still bouncing off the walls. It took two of us to corrall him into a comfy spot and lull him to sleep.

After that things moved along pretty quickly. He was hooked up and they started the sleeping portion of the test. He didn't move at all during the scan except for rolling over once which they marked on the machine a movement. Other than that I'm fairly clueless as to EEG waveforms and what it all means. He did register numerous spikes that showed up during the 20 minutes he was sleeping. Not sure exactly what that means though. The neuro doc won't read the report for another day or two since the test wasn't written as a stat EEG, so I guess now we wait.

The only real casualty of the day was his attitude. Apparently V and chloral hydrate don't make a happy pair. The tech warned me that he would probably seem kind of "drunk" from the sedation for a few hours, but no drunk here, unless they meant a crabby drunk.

After we got home he proceeded to angrily stuff a handful of potato chips in his mouth, yell and grump, then he got a nice warm bath to wash the goo out of his hair. Now he's not so happily bathed, lotioned, and laying in the playpen getting a Pediasure feeding and giving Mommy a break.

... tomorrow is cardiology. Hopefully. Not. With. Sedation.

One Down...

2009-12-16T22:21:00.005-05:00

Neuro went well today, besides the hour and a half we had to wait for our appointment. In the end we did find that although the wait was excessive, the doctor seems to be very thorough. He took V's history and we had a long talk about the episodes he is experiencing. The final result was a script for an EEG to be done next Monday at APH... can you feel my excitement???

Apparently my 16 hour a night sleeper of late can only have 4 hours of sleep the night before (yipee)!

He cannot eat for 8 hours before (in case he has to be sedated for the sleeping portion of the EEG).

And.... I must make sure his hair is clean and neat (shouldn't be a problem).

Here we go.....

2009-12-16T01:21:00.005-05:00

We saw endochrinology on Monday, according to Dr. J his growth hormone levels and binding proteins are both at the very low end of normal. She was very impressed that he still seems to be growing well height wise despite it. She did say that both of those levels can be affected by nutritional status. Considering V's naughty stoma that led to his nutritional misadventures over the summer, that could possibly be the culprit. Even though it's now December, he's still playing catch up. She's not too worried. She gathered a little more information regarding the "episodes" we're investigating now, and she wants to look into the possibility that something may be off with his cortisol levels if our other doctors visits this week don't show anything conclusive. Several years back I had some major problems with my cortisol levels in relation to my lupus.

So wish us luck. Tomorrow is V's first neurology appointment. Hopefully we'll go in and find that it's nothing, that his "episodes" aren't seizure related. The alternative that it may be another heart issue isn't exactly an appetizing thought either, but we'll take it one specialist at a a time and hope for the best!

It's like starting over...

2009-12-13T00:37:00.003-05:00

First I want to thank you all for your kind words regarding my last post. To be honest I wasn't sure I should post about it. I've gotten so used to keeping it a private matter for so many reasons, sharing was kind of scary. I have just been so overjoyed in our newfound contact.
My William has a career in technology knocking at his doorstep, I'm sure of it. He got through some pretty sophisticated stuff to contact me. I am so proud of him. Both of them!!!
Justin, my now 13 year old (he was 8 1/2 when we were last together) has been a bit more shy and reserved. Thay have been through alot and he has some serious trust issues to work through. They were basically brainwashed into thinking that I didn't want them back. That I had sent them away. Fortunately William was old enough to know that it wasn't true. He is 16 now, he was 12 then. He's working on helping his brother understand what has happened. It's going to be a long, slow journey I'm afraid, but it's all worth it if it means that I can finally have all my children together again.
I just thank God that we found each other. They are still up north right now. There is alot to be worked out, but I talk to them often and we'll be exchanging more pictures soon.
Believe me, I'll be showing them off too!

As for the V update, we did finally get his bloodwork done Friday night. We had to go down to APH and have the NICU team draw him. They were wonderful with him and in the end it took an hour and a half, but they got it. They found a couple of halfway decent sites to draw from, but the blood had to be coaxed out of his veins. I'm just glad it's done.
Now we have Endo on Monday, then Neuro on Wednesday. Next week on the 22nd is his Cardiology appointment. Hopefully one of them can give us some answers to explain his "episodes", plus he's taken to sleeping anywhere from 14 to 16 hours overnight. He's always been a great sleeper but that's kind of excessive even for him!
A huge part of me hopes that we're just overreacting, or that maybe he does just have a virus or something, but my logical thinker knows that a virus wouldn't be holding on this long.. we'll see.

Bear with me...

2009-12-11T00:41:00.003-05:00

I'm kind of going out on a limb here, emotionally what I'm about to write has been a very difficult subject. Not one I have openly discussed. Partly because my journey with this needed to remain private for reasons I cannot explain. Also because it's just plain painful.

Four years ago, shortly before V's birth my two oldest children went for a visitation with their father up north. They were meant to stay with him for the last couple of weeks during the summer of 2005 and return home before the start of school. I took them to the airport and put them on a plane with every intention that in a matter of weeks they would be home.

I never saw them again.

The whole experience isn't one I care to relive in writing at the moment, but to sum it up, their father stole them from me.

In the midst of dealing with V's many medical and health issues over the last four years, I have been waging a war. A war to bring my boys back home. I finally made contact with my oldest son, well, he was able to make contact with me. Apparently in the past four years my shy, quiet boy was becoming quite the technical genius. HE found me...

I still had no ability to get to them at the time and no idea other than William's (my oldest) verbal description of what my two boys had become. Today, for the first time in four years I received an email containing a picture of my children.

I know this is probably not what any of you expected to read, honestly, it's not something I ever expected to post about. Up until now it's remained a very personal and private fight.

But today... today I can't stop smiling. I can't stop crying.

More than anything, I can't wait to hold them again.

Pictures!!!

2009-12-07T23:29:00.007-05:00

I finally did it! I uploaded the Thanksgiving pictures!!! The first one is the best homemade mango salsa EVER.. the pies in the background turned out pretty darned good too. There were pecan pies behind those.. yum!

V (Vincenz as he's called at home) with Ryan and sissy Alissa. Kalei was being a bugger and decided to stay at her Mom's the whole day... boooo :(

This is a pic of our oven baked bird. The biggest one with all the stuffing inside! The other two were smaller, but only because we had to fit them into the fryer outside. They were injected with cajun butter and fried in peanut oil. Ooohhhhh.. good.

That's Ryan smoochin for the camera.

That's me, V, and Ryan behind aunt Kelli and her macho man Caleb. He's 6 months old and weighs almost as much as V!

Ha! Ha! Daddy and V along with goofey cousin Colby :)

More V perched happily on Daddy's head!!

So there's just a few of our Thanksgiving day beauties. Sorry it took so long to get them up. I seem to get sidetracked so easily these days.

Just to follow up, V has his neurology appointment on the 16th, and cardiology on the 22nd.

We have attempted twice now to get his bloodwork done and no one can get blood out of my kid! It's very depressing, I hate him having to get poked and then it's all for nothing... sigh. Maybe the third time will be the charm. We're going back down to Arnold Palmer this time to let the NICU nurses give it a go. Wish us luck.

He's had a good couple of days, we haven't seen any "episodes" so that's encouraging. Makes the wait for his appointments less frustrating.

Still... you know my munchkin. He loves to keep us guessing so I'm definitely not letting my guard down, but it's nice to have some good days :)

Need some advice.

2009-12-04T00:25:00.003-05:00

So I've been a little sidetracked the past week or two trying to get over the crud I can't seem to shake, so when V started feeling kind of down I figured it was the same thing.
The thing is that he seems to be fine a large portion of the day, then right in the middle of whatever activity he's involved in, he has to lay down. We didn't really make too much of it at first but then we noticed that he seems to be doing it more often, and at inappropriate times. Right in the middle of playing he will simply stop, lay on the floor, and stay there for several minutes. Sometimes he will nap a little after, but mostly he gets back up and goes about his play when he's ready.
His GI doc noticed the behavior at Mondays visit and urged us to go to our pediatrician.
When we arrived in the office, to be honest I was kind of afraid we were making too much of it. I mean when he's up, he's fine.
The whole wait time in the office he wouldn't settle down. I started to feel like I was just wasting her time. I strapped him into the stroller and gave him a book which he busily started working through the pages of when I noticed he was very quiet.
I looked over and his head was down on his shoulder, his lips had gone very pale, and he was not moving AT ALL.
I reached over and brushed his cheek and he looked at me and smiled. Then he layed his head back down again. A few minutes later he was back up and running.

WTH???

Dr. R went through all the "episodes" with me and the symptoms he has. She was initially worried about seizures, but he never goes limp or spaces out. He purposefully lays down and he will make eye contact. He doesn't go limp or spastic at all.
When I assured her of this she began leaning toward the possibiity of a cardiac arrhythmia. It would explain why he is so seemingly fine one minute, then down the next. Arrhythmias can cause a sudden feeling of weakness and dizziness. It would account for his need to lie down for several minutes at a time.

UGH...

We had to put off the bloodwork until tomorrow, but she wrote for a bunch. She thinks that if it were related to a deficiency in his counts though, that he would feel like that all the time and he definitely doesn't. It's weird.
We have tons of experience dealing with heart failure and such but this is uncharted territory.
Dr.R is going to set him an appointment with a neurologist just to be safe, and cardiology to check on the possible arrhythmia.
I'm just wasted tonight. Every time things seem like they're smoothing out he gets hit with something new.

Has anyone dealt with this type of issue with their children?

I haven't forgotten...

2009-11-29T23:01:00.002-05:00

Sorry I haven't posted our Thanksgiving pics yet. I still haven't uploaded them from my camera.
Everyone here is still feeling crummy, I can't wait till this passes. Every bone and joint hurts.. ugh.

Lil V is definitely NOT himself. Usually he's pretty spunky and constantly on the move lately, but this past week he's been anything but.
Several times a day I look for him only to find him laying flat out on the floor. Yesterday he was doing one of his favorite things, emtying out the bottom of the refrigerator. When I went to pull him away I found him laying on the floor surrounded by all his loot, nearly asleep. Definitely NOT like my little troublemaker.

As sson as I can take a deep breath without coughing up a lung I'll get our pictures on here. We did manage to have a really nice Thanksgiving and I can't wait to share!

Not so bad after all... who knew???

2009-11-26T23:52:00.004-05:00

Happy Thanksgiving everyone, we hope you all had a fabulous holiday.
To be honest I was really nervous that today wouldn't go well. This side of our family is notorious for their "bar room brawling" type of mentality.

Tends to make for touchy family gatherings.

But today went way better than I had ever anticipated. There was one family member who showed up as dinner was finishing up and attempted to start an argument at the dinner table over the fact that there was no more pumpkin pie (seriously).
After a very short time he was asked to leave which he did... whew.

Other than that it was really pretty uneventful. Everyone worked together (woohoo) to make a nice holiday dinner for a house full, and I do mean full. There had to be thirty people there!

So, the sheriff's department got the night off, and we had a really nice dinner. The kids ran around being crazy and having fun and the adults got to spend time together for once in some peace.

You have NO idea how thankful I am for that!

p.s. I did get some cute pictures of our day, I'll post those when I get them off my camera.

Moving in the right direction...

2009-11-25T01:29:00.003-05:00

Well, today has brought some ups and downs, but for the most part everyone seems to be feeling at least a little better.

Ryan's prednisone is finished (thank God), I love my kids on steroids!
He's still on the nebulizer treatments morning and night with albuterol and the flovent inhaler. He also gets claritin daily for some skin related allergies. The combination seems to be working so we'll keep it up. X ray's today were negative for any infection, but I did get that ominous "you need to see his doctor this week for the full report on his films". Love that.
We'll see her tomorrow morning so we can get that out of the way before the holiday just in case we need to change any of his meds.

Little V man is still fairly sputtery and doesn't have much of an appetite, but we have g toobie backup so i'm not overly worried about that. Usually he loves mealtime. Sometimes I think it's more about the social experience for him, but he likes his food too!
Seems like no matter how much he gets in though it's never enough. All he has to do is miss out on a couple of Pediasure feeds and his weight starts to plummet.. go figure?

Ah well. He's still on the breathing treatment too. Albuterol and pulmicort for now. We have the pulse/ox here so if need be we can use some supplemental O2, but he's still hanging at the lower end of normal. That in itself gives me more peace about him being sick. Usually, if it's the start of someting serious his sats drop way low even before the major symptoms hit and i'm not seeing that yet, so I think we're just dealing with a run of the mill case of the snots.

I do want to thank you all for the love and wish everyone a Happy Thanksgiving!!!

Now for my holiday wish...

Some of you may know that the bulk of our close family is Hawaiian, living in Kauai, so we unfortunately won't be with them for Thanksgiving.
The family we do have here is, how can I put this delicately, um, wildly dysfunctional.
Imagine a house full of loud, overly opinionated Italian rednecks...

I'm just hoping we can get through the holiday without any intervention from local law enforcement.
#1 because i'm tired of blazing lights coming down our drive, and..
#2 because I have no money to spend for bail. Seriously.

... wish us luck :)

And the snots go marching...

2009-11-22T22:44:00.005-05:00

Right to the next unsuspecting munchkin.

That's right, my little guy is wheezing and sputtering. Huffing like a friggin freight train going uphill, and that's when he's sleeping. His sats are hanging at the precarious point, especially when he sleeps, but so far we're still dodging the need for O2. Not sure how long that'll last though if this keeps up much longer.

The rest of the day he barks like a congested seal with a reactive airway disease. Sounds about as pretty as it is. So we've now added a twice daily Pulmicort neb to our mucous blasting aresenal of bronchodialators and steroids.

Here's to hoping it works.

The doctor calls it "phlegm" but to me it's still just snot.

2009-11-21T00:53:00.004-05:00

How's that for a lead in???

Well it's happened. My ONE healthy kid is no more. A few months ago Ryan started with a nagging night time cough. Lately it's progressed to a full blown snotty pukefest nearly every night.

No sleep, irritable, ready to snap.. and that's just me. Ryan's worse.

So we gave in and headed to our friendly neighborhood pediatrician Dr R.
She sems to think that Ryan is becoming asthmatic, considering the symptoms combined with his exam and our oh so healthy (not) family history.

So we went home with a script for a chest xray, flovent, albuterol, and prednisone.

yay.

There's no school next week because of the holiday and my normally turbine driven, go flat out, has to constantly be moving six year old is now on steroids.

..... pray for me. please.

I does seem to have helped though. In the past 48 hours his respiratory symptoms have done a complete 180. He's slept for the last two nights (hallelujah) and had no major hacking during playtime, so I guess it's worth the craziness I'm very sure is coming.
Fortunately the prednisone is only for a week at this point. The flovent and albuterol are long term. No big deal in the grand scheme of things I suppose. Just one more reason to Love Love Love my girls at the pharmacy for being so on top of our needs.

I did have to turn down Dr R.'s very polite offer for a nebulizer and aerochamber.

We already have three... *sigh*

Whatever it takes :)

Frustration with the granulation

2009-11-18T22:32:00.006-05:00

Say that five times really fast...

So this granulation business is really getting old. V's first attempt at a g tube was a multiple disaster so I really don't know how long the granulation tissue is supposed to hang around in a "normal" stoma.

... i just wrote "normal"....

he he.

A few weeks ago I finally burned off the last of it with some silver nitrate, and now it's back with a vengeance.

When you look at his stoma, the worst of it is on the left side. It's something like a big red sticky flesh donut.

We have the big guns steroid cream and that helps but I don't like to use it too much. Steroids can be tricky. Helpful in the right amounts, and hurtful if you use too much. Too much can actually cause the skin around the stoma to thin. Something we definitely don't want.

So silver nitrate has become by backup crutch. Fortunately if I wait till he's asleep and dab it gently he never even flinches, but the idea of gently dabbing something on my baby that comes out of a package with a skull and crossbones on it that says POISON in big red letters, just doesn't make me feel all warm and fuzzy about using it.
Then after a couple of days it comes back!!!

I'm still experimenting with the holistic approach. I've gotten alot of advice on essential oils and creams but i'm reaching the desperation point here.

Don't get me wrong, i'm more than excited to be on the "normal" side of things. I'll take this problem anyday over what we dealt with before, but big fleshy skin donuts be damned!!!

... ok I feel better now :)

Urgh...

2009-11-17T09:28:00.002-05:00

Thanks for the love...

... now i think maybe an expectorant to fight off the ick ...

I thought long and hard about the nettie pot suggestion, It's a good idea really, it's just that i don't think i'm that brave.

I worked in a hospital for four years, i've treated bed sores, parasites, major ick of every shape and size. But the one thing that can bring me to the verge of spewage quicker than anything???

Mucous. Yours, mine, anyone's within earshot of the gurgle.

I know i'm weak :)

(thank God V's never needed a trach)

I'm getting...

2009-11-17T01:34:00.002-05:00

... sick ... ugh ...

... hate. being. sick ...

... sore throat ... mucous overload ...

haven't quite reached the "glazed donut "phase, but i'm workin on it ...

... i need a lozenge.

Frustrated and standing still

2009-11-13T00:12:00.003-05:00

Grrr.. I'm having trouble getting V back into therapy. He's been out of his regular PT/OT and speech therapy for months due to all the feeding tube problems he was having. He was so sick and weak from malnutrition that he could barely stand on his own for the longest time before this last surgery.

That's why I finally pressed for the surgical revision of the site. I think a year and a half of trying to stop the profuse leakage from his original site was enough (not to mention the repeated infections and intense pain from skin breakdown), and fortunately so did his GI doctor. But by the time they really got down to business he was so depleted it was rediculous.

There was no way he could have participated in any type of active therapy.

In a way it happened at the perfect time (if there is such a thing), because financially we were having trouble coming up with the gas money to get there and NO ONE wants to come out here to our house. Can't say I really blame them. We're not in an easily accessible area and there's no room in here to allow for much anyway. Going to them is really the best option for us.

Now that V is over his last (I hope) g tube surgery and is healing well I want to get him back into therapy but nobody will return my calls or emails. His therapists have always been very accomodating and wonderful to us, it's just that I can't seem to get a response from ANYONE.

Ugh. Just venting today, and hoping somebody returns my emails soon. My kiddo needs services and when he couldn't participate they were all over us. Now that he's ready.. where is everyone???

Four Years Ago...

2009-11-08T01:11:00.005-05:00

It was four years ago, November 7th 2005, that I waited with a mix of blinding fear and utter relief coursing through me. It was this on this day, at 5:00am that we sat in the Special Care Unit counting down the final moments before V would be taken for his life saving heart repair surgery.

We couldn't easily hold him because of all the wires that were hooked to his tiny body. He was barely 5 pounds. At one point I took off his clothes so we could get some final, scar free pictures of his little body. Those moments, at 7 weeks old, would be the last that he ever spent free from scars. From that day forward every few months they would be cutting into him for one reason or another. Four years later that hasn't changed.

Around 7am they took him. We got to carry him down the hall to the surgery suite and kiss him goodbye one final time. One final time, as a child fighting to breathe, to eat, to move blood and oxygen through his body. Fighting to live. We hoped with everything we had that when he awoke it would be to a new life.

There were many fears. Not just for his heart, but for his blood, his bone marrow to come back clean. They were aspirating a sample from his sternum when it was cut to reach his heart. They feared he may have leukemia. That day they were fighting to win one battle, but would we win the rest of the war?

The heart surgery would take hours, but the marrow would take two weeks. It might as well have been forever...

Hour by hour they updated us. His chest is open... His sternum is open... The marrow has been collected... He is on bypass...

The repair is complete... He is off bypass and his heart is beating...

When we saw him in the ICU we were both shocked and relieved. He looked horrific and beautiful all in the same breath.

His repair went well and they were very hopeful. Two weeks later his marrow came back clean.

For now...

We were advised that due to a blood disorder he was born with in combination with the increased risk from having Down Syndrome, that V's chances of developing cancer in his lifetime were very high. But for now we were winning.

You all know the rest.. For now we are still winning...

Happy Heart Day baby.

I'm Baaaack!

2009-11-06T23:50:00.006-05:00

Well, I learned the lesson this past week that I should have braved the toothache pain along with it's drug induced giddiness and posted Halloween pictures. This would be because two days later on November 2nd, Ryan turned 6 and in my Happy Birthday picture frenzy I made a horrible mistake....

... I erased the Halloween pictures! Aaahhhhh!

Way to go supermom.

So instead of the cuteness of my runchkin sporting some serious leather and a hefty number of temporary "biker" tattoos and Ryan as "super Spidey" with rippling muscles of foam....

I have nada. I suck.

I did manage to keep Ryan's birthday pictures with all the kiddos (and cousin Jessi), and get a few more recent one's of V sampling Big Daddy's hunting gear.

Therefore I leave you with a new level of cute.

Oopsey!

2009-11-01T22:14:00.002-05:00

Waited too late in the day to do Halloween post...

Bad toothache pain...

Weeeee bit high on pain pills.....

Halloween cuteness forthcoming :)
(as soon as I can focus on the keyboard).

Just one more "bump"...

2009-10-31T00:02:00.003-04:00

This one isn't about V thank goodness, but it is about Daddy. You see daddy has a condition called peripheral neuropathy. His uber efficient doctor (not) still has NO clue as to where this has come from.
Lately in addition to his numbness and pain, he's been having bouts of breathlessness and becoming very overheated. Tonight he made an impromptu trip to WalMart for some nighttime goodies around 9pm. At 10:30pm I was getting pretty worried, and by 11:15pm when he pulled in the driveway I was darn near frantic.
Turns out he got way overheated and lost his breath so he sat down on a bench and proceeded to PASS OUT!!!
The manager and assistant manager wanted to call him an ambulance but my hard headed man rested a bit and chose to get his goodies and drive himself home!
Keep in mind we live in the middle of NOWHERE.. so if he hadn't of made it home we would be literally up a creek....

*sigh*

Well, outside of knocking him out myself and driving him to the ER, I'm hoping we get a good night's sleep and all is better tomorrow.

I love not having insurance....

Barring any major disaster, stay tuned for super cute halloween photos to come (picture me crossing my fingers).

Letters To God...

2009-10-27T22:28:00.003-04:00

Sorry for the lapse in updates lately. To be honest I've been "experiencing" Facebook for the first time, and I've become a bit of an addict.
I can't believe how many people I have come back in contact with in the last few days...

Well, one thing that I found out today I wanted to share. When V was in Arnold Palmer Hospital during the summer they were filming a movie in the main lobby. Our wound care nurse explained that it was a movie about a child fighting cancer, a brain tumor. We sat and watched for a time and went on our way..

I never knew anything more about it until today. A friend posted a link to the movies website. It's finally finished production and is scheduled for release in early 2010. It was filmed at several locations including APH and Give Kids The World complex that houses children and their families during Make-A-Wish trips.

And unfortunately, it's based on a true story. The story of the filmmakers child Tyler. It is called "Letters To God".

PLEASE, PLEASE go check it out.. and spread the word!

www.letterstogodthemovie.com

I Found IT !!!

2009-10-24T00:23:00.003-04:00

Well, I finally found it. And I wasn't totally crazy, the reason I couldn't find it in this tiny little trailer is because it wasn't in here. That's right, I lost it somewhere else.. another 10 feet away in the truck. Go me.

Anyway, it's back. So guess what I have for you tonight ???

Pics of my little wild man Ryan, not so wild and feeling kind of rotten.

This was from earlier this week in the aftermath of the blue Cheeto craze!

And yet again little munchkin protests his time in the lockup.

Not Much... except Cheetos.

2009-10-19T20:34:00.002-04:00

Not much is right, it's been blissfully uneventful the past few days. I would love to entertain everyone with some super cute pics of the V man, but I cannot find my camera.

*sigh*

How the heck you can lose a camera in a 26 ft trailer I just do not know. There's barely enough room in this thing to breathe let alone lose anything! But I guess if it can be done...

... it would happen to me :)

Hopefully our treasure hunt will produce something. I've always complained that it took crappy pictures, but at least I could take some. That'll teach me to complain, right?

When I do find it I'll have to show you all a picture of our latest find... color changing Cheetos.
They turn your mouth blue when you eat them! After a few my munchkin looks like he's pulled a dracula on a fountain pen!

AAhh, that's going to be my challenge to a certain stumpy little cutie we like to call Miss Pudge (Yes I mean you LC).
Tell your Mama to go to the store and buy you and Daddy some color changing Cheetos.

I bet that'll be some photo shoot.

Keep Reading.. It's a Two for One!

2009-10-14T20:52:00.006-04:00

Well I missed my post for last night, poor little scooter slipped by the kitchen table and bit down on his tongue. Hard.

There was blood EVERYWHERE. It took quite a while to get him calmed down and cleaned up.
A futile measure really. Every time I looked over at him for about the next three hours his mouth was oozing blood.. ugh.

It's tough to deal with a cut in the tongue. Holding pressure sure is hard, and keeping little fingers out afterward is down right impossible.

Daddy finally figured out a way to pucker him up and get the bleeding to stop. He sprayed his tongue with sour spray candy. Even I was impressed.

He's alot better today, although his tongue still looks pretty gross when he sticks it out. But at least it isn't bothering him much anymore.
---------------------------------------------------------
Lacey from Jaxson's Fight tagged me the other day to tell how my kids got their names so here you go :

My oldest William Lee, is now 16. When we first found out I was pregnant we never really talked much about girl names. I don't know why, but we had settled very quickly on the name Justin. When my ultrasound confirmed a boy, we were very excited. That evening we decided to tell my ex-husband's family about our "boy" when his Mom called to tell us that his grandfather had been taken to the hospital after suffering a stroke at home. They weren't sure he was going to make it. We rushed to the ER just in time to say goodbye. We never even got to tell him our news. His grandparents had raised him, and his loss hit him hard. That evening he asked me if we could name the baby after his grandpa "Bill", William.
As far as the Lee, that was for my ex-husband's middle name.

Our next son was obviously going to be our Justin. He's now 13.
His middle name is also Lee. My Mom used to joke that we just weren't all that creative, but really it's because my Dad's middle name is Lee too.

Now on to my younger set...

Ryan Thomas was my third boy, he's now 5 (almost 6) and Daddy came up with his first name. It was from one of his favorite radio DJ's children. His son's were named Ryan and Gage.
Thomas was my idea, I had always loved the name Thomas. Don't really know from where. Maybe all the Magnum PI episodes my older brothers made me watch as a kid.. "Thomas Magnum". That's the only Thomas I ever really knew of. Good looking, charismatic, what wasn't to like? Ryan Thomas just seemed to flow.

Now Vincentio, that's a whole other story. We could NOT think of a name for this kid. We couldn't agree on anything. Daddy is half Hawaiian and half Italian so we started looking through name books. His oldest daughter had been given a Hawaiian name, Kalei (pronounced kah-lay) so we thought that the youngest should have an ethnic name as well. We looked through half a dozen Hawaiian name books and just couldn't find anything we could agree on and the male Hawaiian names in his family are VERY hard to pronounce so we didn't want to go there.
We started looking at Italian names on the internet when I went into premature labor. Two days after he was born we were still looking (ha). With all the hubbub going on with his DS and heart diagnosis, my older boys took on the task of looking for a name.
On the third day after he was born, my boys called me at the hospital and announced that they had found the name Vincentio on an Italian name website.
It is a derivative of Vincent, the conqueror. It sounded exactly like the strong name our little munchkin needed. As for his middle name Albert, that is for Daddy's grandfather who raised him and my paternal grandfather who died when I was young. The only one of my grandparents I was ever really close to.

Flying High...

2009-10-13T18:22:00.008-04:00

She has gone home ...

Early this morning, at 3:50am Jessica Easley took her final, painful breath on this earth.

She did get her final wish, to go to Heaven at 11 years old! Yes, she departed this life on the very day, 11 years ago, that she entered it.

She is free now. Running and playing with 2 legs, 2 healthy lungs.

The only consolation in this terrible thing is that along with her earthly body, so died the beast.
It has lost. It causes her no more fear, no more pain. It can't take any more.

Oh how I wish there were something besides death that could have conquered this.

--------------------------------------------------------------------

Thank you all so much for your kind words and for putting up with my ranting of late.

It's difficult in these situations not to climb up high and scream it from the rooftops!

The saddest part is that it is not over. So many more of our friends will meet the same fate I'm afraid. And when they do, there will be no doubt in anyone's mind of how it makes me feel.

Thank you all again.

Just to pass along the information, Jessica will have visitation on October 15,2009.. burial will take place on the 16th.

Her procession will consist of one final motorcycle ride through town before she is laid to rest that afternoon. I can only imagine the huge smile she'll have from up above. She did specifically request that all in attendance wear bright, cheerful colors. No black unless you're wearing biker leather!

For the rest of her "celebration of life" plans please see her caringbridge site.
www.caringbridge.org/visit/jessicaeasley

You all are the best.

P.S. I'll post later tonight with some more from the little skitterbug! He's had a busy day.

Just to clarify..

2009-10-12T23:32:00.004-04:00

I'm a little calmer now than I was earlier. Just to let you all know, Jessica is still hanging on.

I don't want anyone to think that I have any contempt for "pink" ribbons. Breast cancer is a killer. It deserves awareness and funding. It deserves every bit of the attention it gets.

The Susan G Komen foundation has made incredible strides in their fight for women's health.

It's just incredibly maddening that our children, OUR CHILDREN.. cannot get the same.

People don't understand how insidious cancer in children can be. How such a monster of destruction can grow inside of such an innocent being. It spares no one.

Most childhood cancers are very unlike cancer in adults. It cannot be treated with the same drugs used in adults in most cases, and when a child with cancer relapses the survival rate can drop from 90% (for common forms of ALL) to a mere 10%. When it comes back, it comes back with a vengeance. A child in remision is not considered "cured" for years, so the possibility of relapse is astronomical.

There are some forms of childhood cancer that start out with survival rates of only 5%, those tend to be the "rare" cancers, like ATRT (brain tumor). So rare, and we've already lost more friends to that particular "rarity" this year than I can count on both hands. It's unbelievable.

Then there are cancers like Jessica's ARMS (soft tissue cancer). She has fought this beast for over 3 years, been in remission twice, and with every relapse the cancer seems to "outsmart" the drugs. This is unfortunately very common in many forms of childhood cancer. The beast learns to adapt and change so it lives despite the toxic chemicals that are designed to kill it. Even one cell remaining after treatment can grow an army of new, "smarter" killers.

This is why we need more funding, new drugs. In Jessica's case, she has tried all the chemo drugs. None of them work anymore, and there is nothing left to fight with. No new drug that she hasn't tried yet to kill this beast. There's nothing.

What are you supposed to do when the doctor says there's nothing left they can try???

You take your child home.
You do your best to help control their pain and fear as the beast takes over their body, robbing them of the most basic of functions.
You spend time trying to explain Heaven to your child and hope they are not afraid.
You try to make enough memories to last the rest of YOUR life without them, like that's even possible.
You help your baby to die with some sense of dignity and peace, as the beast tries it's hardest to rob them of it.

What the hell??? Ok, maybe not much calmer.

I want to see as many gold ribbons as pink. Our children deserve it.

Spread the word.

Consider this your "fair warning"...

2009-10-12T13:29:00.005-04:00

Damn it!!! It's not fair.

She's 10 yars old, and she can't move. Since Saturday she can no longer move AT ALL. She can barely breathe, she can't open her eyes or speak. She can't even squeeze her Mom's hand anymore.

She can cry. When she is touched or moved for any reason, she can cry from the pain.

When her family tells her that it's OK to let go, to be with Jesus, she can cry.

Where is God's plan in all of this? Don't get me wrong, I am still a believer, but it's just so hard to understand how this is possible.

Where is God's mercy?

There are pink ribbons everywhere for breast cancer, as there should be, it's a horrible disease.

Where are the gold ribbons for our children ???

.. 46 children are diagnosed with cancer EVERY DAY.
.. it is the #1 killer of children, more than cystic fibrosis, AIDS, and genetic anomalies combined.
..EVERY NIGHT, 7 children fighting this beast will not live to see the next day.
..it has been 20 YEARS!!! since a new drug was approved to fight childhood cancer.

Why don't more people seem to care ???

Where is their hope for a cure ???

www.caringbridge.org/visit/jessicaeasley

The Time Is Near...

2009-10-11T15:00:00.002-04:00

Sweet Jessica is still here, for now.
Her Mom, Teresa, feels strongly that besides the love she has for her family, that the one thing keeping Jessica here is the fact that she desperately wants to see her 11th birthday.

That day is still three days away.. it might as well be a million....

Teresa cannot stand to see Jessica suffer any longer. In her weakened state, Jessica is a bit confused when she is awake. With the huge amount of pain meds she is on, it's amazing that she can be awake at all.

Yesterday Teresa decided that Jessica's birthday can't wait any longer. Her baby deserves to be free.

So they decided that yesterday, Saturday 10/10/2009 would be Jessica's "birthday".
They knew that she would never be able to eat a birthday cake. She can no longer swallow due to the tumors in her neck. But how could she not have one?

So they asked her what kind she wanted, carrot or chocolate. With a huge smile, Jessica ordered the chocolate birthday cake.

"Chocolate".. is the last word she spoke.

Since then she has been relatively comatose. She does sigh and make sound now and then, but her pain seems controlled so she sleeps peacefully for now.

The whole family is beyond in shock that this may be the end. Jessica has fought so hard for so many years, no one can believe it's really about to be over. The fight for her life has really ended. Now the fight is for her to gain a beautiful set of wings. To fly free.

I will post more when I know. For now please pray for this child to have a peaceful journey.

Taking Flight

2009-10-10T22:34:00.005-04:00

I do hate these posts.. never quite sure how to begin, just have to go for it I guess.

This one if for sweet Jessica Easley. I have posted about Jessica several times over the past month. Last time, a couple of weeks ago, they didn't think she would be with us much longer.
But true to fashion, Jessica still fights. Fighting to live, fighting for her angel wings.

Mom says her favorite saying is "i'm a rule maker, and a rule breaker". She's one tough 10 year old.

These past few days have been very hard. Jessica has been totally bedridden and unable to move her body for weeks now, but in the past few days the beast has grown drastically. The tumors in her chest and neck have begun to expand rapidly and spread upward into her face.
She has developed immense swelling in her face and throat. Although she is now on oxygen continuously, breathing is a fulltime struggle. Her fear of suffocation continues to be a constant.

She has been sleeping much of the time, when she is awake and lucid she is still giving Mom instructions about how she wants her celebration of life to be carried out. She is hoping to make it another few days to her 11th birthday. She says her one true wish, other than to die in her sleep, is to go to Heaven at 11 years old, not 10.

Wtf..

How on earth can there not be anything left to fight with for these precious babies?
How can we possibly be forced to stand by and do nothing but watch as the beast overtakes this child and devours her?
Where's the sense in the fact that it's been 20 YEARS since a new drug was approved to fight childhood cancer?

When we all tuck our children into bed tonight and give thanks to the Almighty for their health and safety, please remember that Jessica is fighting still..

..and that there are seven other children fighting the beast somewhere tonight that won't live to see the sunrise. And as those children end their fight on this earth, tomorrow, 46 more children will just be beginning the fight.

Spread the word.

www.caringbridge.org/visit/jessicaeasley

So I have an issue.. imagine that.

2009-10-08T23:40:00.004-04:00

Alrighty.

So my naughty little skitterbug is now 4 years old. Holy crap.

Last year after his 3rd birthday he officially "transitioned" from the Early Steps birth to three program to "schoolage"... scary.

We did alot of research into looking for the best fit for him in a pre k program. The local mainstream elementary school was our first option. Considering V's collection of special medical issues, along with the need for tube feeding, he needed to be placed into a "special needs" classroom. No shocker there.
The teacher was a lovely older woman who was immediately taken with my boy. She did comment on the fact that the special needs class was for kids from 3 to 5 years old, and they had never handled a child of his tiny size or with his extensive medical issues. At that point he still was not even walking yet. She admitted that he would require quite a bit of extra attention not only for teaching but to keep him safe in a classroom of typically sized children. He was not mobile to where he could participate in most class activities or even on the playground. He still didn't even have meaningful speech. She did say that she would be willing herself to make whatever accomodations were neccesary for him, but she would not be teaching the class after the start of the next year. She was retiring. The new teacher was younger than she, and new to the special education teaching position.

One option OUT.

The next and final option was our local "Easter Seals" school. I was excited about the possibilities there because my older brother, who was born with cerebral palsy had attended the ES pre school program when he was a child. He made amazing strides there.
When we first toured the facility we were very impressed with the staff. They were friendly and accomodating. They thought V would do very well in their program.
The only problem was that their 3 year old class was comprized of a group of walking, talking toddlers who dwarfed my tiny munchkin in size and ability. The head of placement thought he would fare better in the 2 year old class. It was understandable, but the 2 year old class was not a pre k class. It was more of a daycare with a therapeutic edge. Not bad, but not what we were hoping for.

You see, cognitively, V was far ahead of his physical ability. We didn't want his mind stunted by being placed in a room where he would do nothing but sit and play on a rug for 3 1/2 hours a day. He could do that at home for free.

Still, everyone felt he needed to make the move from home based intervention to a school setting so we went for it and hoped for the best. It took weeks of testing and paperwork, doctors orders and medical approvals, but we did it. And so began his first year of pre k.
The first week was rough. His room was cold, a problem with the air system, so we were asked to dress him warmly. Still, every time I picked him up he was a teeny tiny popsicle.
The second week he began to get low grade fevers and was sent home on two occasions.
By the third week they were asking us to keep him home if he even sniffled because of his medical history, and by the fourth week the school nurse called me at home and stated that perhaps he was not ready physically (immunity wise) to be in a group setting.
So ended our pre k experience. The head of the school gave me the necessary paperwork to apply for home schooling based on medical need, but before I could submit them to the school board for approval, the whole G tube nightmare began.
In and out of the hospital, infections and fevers galore. Definitely not acceptable for school visits, even at home.
Since then he's had to miss an extensive amount of therapy as well since he just wasn't able to participate in a care setting, and home visits, given our housing situation, are not optimal.. or popular with the local therapy providers.

Finally, over the past month he has begun to blossom once again, and I am attempting to find available therapy to get him restarted. He should be receiving 60 minutes per week of PT/OT and speech. Hopefully that will be up and running soon.

Now I am left with the pre k issue.

I'm not super excited about returning to the Easter Seals school again. I really don't know that his immune system is any more ready than it was last year, and with the flu craze.. don't really wanna go there. But this year and next he will still need pre k services before he can start kindergarten.
He is definitely mobile now, he started walking earlier this year. Not yet very steady, but he's getting there slowly. He still does not have meaningful speech for communication. He does sign some, but most of his interaction is because WE understand what his sounds and signs mean.

He is also still VERY small. He wears 12 month pants and 24 month shirts. Little butt, big belly :) Not even close to his school age counterparts.

All this combined with his other medical history makes a Mommy worry.

Does anyone have any helpful advise? To homeschool or not to homeschool?
What would/did you choose for your child???

HELP!

Yes, I'm a slacker.

2009-10-06T22:16:00.004-04:00

As you all know by now, this is Down Syndrome Awareness Month.
Many of our blogging friends are participating in the 31 for 21 this month to expose the beauty and wonder of our loved one's with Ds.

I would be participating myself if I weren't so busy chasing after my loved one with Ds.
Yep, the V man has been running us all ragged since he's healed up so nicely from his last surgery. He's into everything. Destruction on wheels.

I couldn't be happier honestly. As tired as it makes me, I still remember those days when Ms. Sue (our PT) couldn't even get him to bear weight on his legs without a shrieking chorus of displeasure.

Now, I have to resort to the "baby jail" on occasion just to brush my teeth without a major disaster.. ha!

Even his every six hour med doses are only short pit stops and a quick raise of his shirt to "shoot the button" as Daddy calls it. It's sooo nice with this new site, it works right and since there's no pain involved, he readily allows me access without any meltdowns.

Well, that's the breakdown, the runchkin is kickin my butt.

Just spending my days trying to keep up.. and enjoying the healthy while we have it.

A quick PLEASE for all our friends.

2009-10-03T21:13:00.007-04:00

Please, please, please.. if you have knees, now's the time to use them.

Our friend Jessica Easley, the 10 year old girl I wrote about before is nearing the end of her journey.

Jessica has been fighting alveolar rhabdomyosarcoma for the past 3 years. When she was 7, she lost her leg to the beast. After a brief remission she relapsed in her lungs. She fought unbelievably hard and achieved a second remission soon after.

Then only last month she confided in her Mom that she believed her cancer had returned.
Her heart hurt her, all the time. Mom tried hard to think she was wrong. Nothing else to go on.

Until.. a few weeks ago Jessica came down with a "cold" that caused fluid in her lungs.
A trip to the ER revealed that the beast has returned, with a vengeance. This time it was in her spine and her thoracic cavity wrapped around her aeorta.. near her heart.

Within days she was deemed "terminal" and was allowed to go home on hospice. Even for her young age, she's fought the beast so hard that she's exhausted her lifetime allowance of chemo and radiation. How does something like that happen to a 10 year old? For the last couple of weeks Jessica has been confined to a hospital bed in her living room and unable to move due to the intense pain the tumors are causing as they destroy her from within. Her spirits have remained high throughout this horrible time. A testament to the fight within her.

Her Mom says she has been diligently working on her "celebration of life" that is to come. She's been trying to strengthen her family so that they will be able to go on without her as she tries to prepare herself for Heaven. How does a kid do that?

Today, Jessica has taken a turn, her breathing is difficult. The beast has distorted her chest and is crowding her heart and lungs. One particularly nasty tumor invading her neck is impeding on her airway. She is terrified that she will suffocate.

They don't believe she has much time left with us and they are praying that Jessica gets her most important wish. To die peacefully in her sleep, without pain. A wish that up until now she's been denied.

She's only 10 years old. It's not fair.

www.caringbridge.org/visit/jessicaeasley

Absenteeism..

2009-10-03T00:32:00.005-04:00

Sorry for the lack of updates lately. It's not that there's any less happening around here, it's just been super exhausting.

Mainly V has been stable lately. He recovered well from the flu, thank goodness. I still have yet to get any photographic lovelies of his new improved belly but I haven't forgotten.

This past week Ryan has been our main area of worry. Ryan is five, almost six (Nov.2)..

(shameless birthday plug).

He got the flu also this past week but usually he's an extremely healthy kid.

For a few weeks before the flu though, we noticed a worsening nighttime cough.

Not a dry, asthma like cough, but a sort of junky sounding cough.

During the days he was pretty much his normal self so I figured it would pass.

Then the flu came.. and went, and the cough is still there. A little worse actually.

Now it's increasing a bit in the daytime and he's been much more sleepy.

.. and grumpy.

Now, keep in mind that Ryan is the type you have to promise gifts to, or threaten bodily harm to get him into bed at night. And the last few weeks he's ready for bed by 7pm.

Now the last week he's been falling asleep on the way home from school and sleeping right through dinner.

Decidedly NOT normal.

We're going to see how he is this weekend and we may be making another visit to our friendly neighborhood pediatrician.

Mucinex, Claritin and breathing treatments are helping the cough some, but not enough (Ryan has never needed breathing treatments). And this sleepy thing has thrown me for a loop.

I've already done the nervous Mommy check over. No skin rashes or lumps and bumps that I can find, and when he is up and awake he seems alright for the most part. Except for the overly grumpiness and cough. No fevers since the flu made it's leave.

So, send healthy vibes if ya got em', and hopefully we'll be back to our crazy selves soon.

Bad News and Good News

2009-09-28T21:04:00.003-04:00

First the bad.

F L U.

All four kiddos. High fevers, nausea, dry heaves, diarrhea.
Oh the good times we've had.
Pediatrician says she thinks it was swine flu, but whatever it was, I'm glad it's almost gone.

On to the good...

We saw pulmonology and the surgeon today.

Pulmonology, Dr. B said that for all of V's yuckiness of the past week his lungs sound alright.
We are to continue with his daily Pulmicort nebs to fend off any reactive airway issues, and he refilled all of our regular meds. He even hooked us up with a new nebulizer and aerochamber.. woohoo.

The surgeon, Dr.P says the granulation tissue is just being stubborn... really???
He gave us a new script for some amped up steroid cream and a new regimen to knock out the gooey, oozey, puffiness.
He even said the since V's tube has already been out once, well, twice now, that we can go ahead and switch it to a button and get rid of this long tube! Yay!
He thinks the long gtube wiggling around is contributing to the build up of the granulation tissue. His PA faxed the order to home health at 4pm today and by 7pm we had the button guy knocking at our door!!!

Tonight when he's settled we'll do the switchroo and I'll try to get some pics of his new minimalist belly hardware.

Toobie Gooey's

2009-09-24T19:32:00.003-04:00

Ok all you tube Mom's. As you all know V has his new tube site, finally, and all has been well.
Except for the elongated stay in the hospital, and the TWO.. yes, two times that it's been PULLED OUT ALREADY!!

Thank goodness this stoma seems pretty resilient, but we do seem to have one very prominent issue. One that we just can't seem to get under control.

... granulation tissue. ick.

It's been a couple of years since our last G tube adventure and he did have quite a bit of granulation tissue with that go-around but eventually we got it under control.

Now if I could just remember how we did it.

His tissue is pretty bad right now, something like an enormous flesh donut. Mmm.. good stuff.

For a week now we've been religious with the steroid cream. I don't want to over do it though because too much steroid cream can actually thin the skin.
Our other course of action has been silver nitrate. We've done that three times now and still nothing.

I'm beginning to think this stuff feeds off my frustration. It's just getting bigger.

Has anyone out there found the magic cure by any chance???

Is it the FLU?

2009-09-23T17:59:00.005-04:00

Sicky McSickerson....

Happier times...

And so it begins. Last week my oldest stepdaughter Kalei had a fever. Not so surprising now that school is back in session, she tends to catch everything. She missed the entire first week of school earlier in the month.

Her younger sister Alissa developed the fever at school this morning and the clinic sent her home. She is always the healthy one. Her immune system is above average.

Headaches, upset tummies, chills, fever.

Oh crap.

Well, we decided to take advantage of our one option to save little man from the dreaded bug.

We sent them to their Mom's house. It was such a sweet phone call too.. "they're sick, come and get 'em."

I felt terrible, but we know rightfully, that we have to do everything we can to keep V from any exposure. Still, I feel like the bad Mommy.

So we're down by 2 until we know they're not infectious.. it could be a while.

Are you kidding me???

2009-09-23T12:15:00.006-04:00

Seriously. No.

First of all, if that darned toobie comes out again i'm gonna find me some super glue before I put it back in again.

Seriously.

Last night V, otherwise know now as Cheeto (thanks Courtney), was awake with Daddy somewhere around 1am when they decided to do some rearranging in the bedroom.

Don't ask, I have no clue.

Anyway, I was woken up from Daddy yelling a choice expletive.. or three.

Then those words. "It's out again!"

WTF!!!

Yes, it's out again. Balloon inflated, everything intact, laying on the bedsheets.

Nice, shiny new stoma.. with nothin' in it!

oh. my. God.

*sigh*

So it's back in. Again. Balloon is a teeny tiny bit bigger this time.

Grrr.

What is it with my kid and that naughty toobie? What I ask you???

Finally.. some pictures

2009-09-20T23:09:00.009-04:00

After my last post I did try to get some pictures of the birthday boy, really I did.

I managed to at least get some pics WITHOUT any friendly hand gestures..

It was the best I could do. He's crafty with that magazine.

And as an added bonus, some pictures of lil man's newest tummy hardware. They aren't great because I can't turn off the flash on my camera, but here it is. The old site is just above the gauze. You can't see it from this angle, but it looks awesome.

The old tube, the one that was, um, prematurely dislodged.. was nearly the same. It was yellow with no little silicone disk because it was sutured in. Oh well.

I don't even want to imagine the fun conversation i'm going to have with his surgeon tomorrow.

*sigh*

Poor Daddy

2009-09-20T19:42:00.003-04:00

So in the hub bub of the past few days, Daddy's birthday post was put on the back burner.

He turned the big 3 - 2 on Friday the 18th!!!

Happy Birthday Daddy!!!!!!

We had a great day, all the kids together, and a big FAT homemade cheesecake covered in delectable cherries for the birthday boy.. um, man.

Of course I have no pictures.

Not just because my camera stinks and every picture I take comes out looking like some really bad mugshot, but because, frankly, Daddy doesn't enjoy having his picture taken.

In fact, if I were to get a surprise shot of him, it usually includes some obscene hand gesture compelling me NOT to upload it for the viewing pleasure of the general public.

Love you babe.

Oh Holy Crap!

2009-09-19T18:32:00.003-04:00

Guess who got his brand spanking new toobie RIPPED out of his tummy, sutures and all?

I'll give you one guess.

Yup, that would be my munchkin.

So we cleaned up the blood gushing EVERYWHERE, found a spare Mic G tube from our last ever -so- fun gastrostomy adventure, and popped that sucker in the quickly shrinking stoma.

*sigh*

Have you ever heard the saying "if it wasn't for bad luck, we'd have no luck at all"...

... that's us.

After a record setting trip in and out of APH's ER (they had a mad influx of possible swine flu cases in the ER today).. the surgeon looked him over and was able to aspirate stomach contents. He reassured me that we'd done exactly what they would have done for him and politely hurried us out the door.

In his words, "you don't want to leave here with anything you didn't come in with".

i.e. swine flu.

We're home now.

V is happy as ever.

And Mommy is relatively freaked out.

Prayers For Jaxson

2009-09-18T23:29:00.003-04:00

I know I haven't had the happiest of posts the last few days, but the fact of the matter is, there are far too many of our friends suffering.

I'm sure by now you all know sweet Jaxson and his Mom Lacey.
Jax has been having worsening issues with his heart and veins causing some majorly troubling symptoms. His doc's seem to have been dragging their feet a bit when it comes to taking care of this amazing little guy. He's already suffered a traumatic brain injury because, well, he simply did not receive the care he deserved when he was sick the last time.

Jax needs this next surgey to go smoothly, so does his family. They are so worried that Jax won't make it until his surgery next Friday.

Please, please send some love and prayers their way. www.jaxsonsfight.blogspot.com.

Pray for Jax to stay stable until next week, for his doctors and surgeons hands to guided by grace, and for some much needed peace of mind for his Momma.

Thanks.

Annette Elizabeth Maxey

2009-09-17T23:55:00.003-04:00

If you remember, last month (8/22/09) I posted about a sweet little girl, barely a year old, dying from a brain tumor.

Annette's parents were preparing to take her home with the help of hospice.

It's barely been a month out of the hospital.

A month of making memories, taking pictures, snuggling without wires and tubes.

Barely one month out of her WHOLE LIFE... just to be a little girl.

Tonight at 9:47pm Nettie went home to be with Jesus. Home to her big sister Maddie, who also died of rhabdoid cancer four years ago.

Don't know what else to say. Except that her parents have suffered more than any Mommy and Daddy ever should.

Go give some love.

www.maxeyweb.com

Sweetness

2009-09-16T00:06:00.002-04:00

For the first time in Four years... my baby blew me a kiss tonight.

sweet :)

Courtney.. This one's for you...

2009-09-14T22:57:00.002-04:00

Ok Courts, you have absolutely NOOOO idea just how fortunate you are that my camera sucks.

We took V to his follow up with the surgeon this afternoon, and although Dr.P had been called away to surgery, we still saw his P.A.

She looked over his incision and felt that everything looked great.

She cleaned up around the new tube a dabbed a bit of silver nitrate around it.

Then....

As she cleaned up around where the surgical dressing had been she saw what appeared to be a bit of skin hanging above his belly button.
As she tried to gently wipe it away she realized that it was not skin.. it was in fact a small bundle of sutures peeking out from the end of his incision (which ends IN his belly button).

Yup. Sutures sticking out of my munckins belly button.

Ewww.

The P.A. didn't seem overly alarmed but she did decide NOT to mess with them. We'll let the doctor handle that on our next visit.

Oh how I tried to get a quality photo..

Who knows, maybe I can borrow a better camera???

Finding Joy In The Day.. September 11th 2009.

2009-09-11T21:18:00.011-04:00

Oh my goodness did we eat some cake!

Little man couldn't wait.. he had to get his fingers into it!

And this is his most favorite present, from his sisters.

Look! It talks, and I can record my voice!!

He had an awesome party. This picture was after cake, and after lots and lots of wet paper towels!

Of course we haven't forgotten what this day was long before our little V made it so much brighter.

But we choose to honor those who were lost by finding joy in the day.

Happy Birthday Sweetness!!!

Birthday's Galore!!!

2009-09-11T12:25:00.004-04:00

September is jam packed around our house with birthday fun.

My poor Justin's birthday got lost in the shuffle on Monday, between V's hospital stay and my Gold Ribbon post. Thank goodness he's an understanding kid!

My Justin had a MAJOR milestone birthday, he turned 13 on Monday Sept.7th.
I just wish we had gotten to spend it together :(
My two oldest, William and Justin are with their Father in Ohio at the moment. I so miss those boys.

We talked forever on Monday from V's hospital room, he told me all about his party and the fun he had. I'm so happy they had such a great time. But man I wish it had been here.

I'm waiting on pictures of his celebration from their Dad, so as soon as I get them i'll post a few for you all to see. Justin is just the opposite of his big brother (Will looks like me), he looks so much like his Dad. Blonde hair and big beautiful blue eyes! I miss those kids something awful.

Now on to the next Happy Birthday.. my Dad! He turned 70 years old yesterday (Sept. 10). He had a nice day all around but it's still very hard for him to find his happiness without my Mom. They were together their whole lives. Married as teenagers and together every moment until she passed away last year. He's so thin. Imagine a 6ft 5in man who weighs a slight 133lbs!

We're working hard on fattening him up. It's difficult because he says everyting he eats developes a horrible metallic taste after only a few bites. We've had him at many doctors but no one seems to know what causes it. He's even been told that it's in his head. Maybe, but I doubt it. My Dad's not the type to give in to something that easily. He did go through a MAJOR depression last year, but he really does want to eat now. He just can't. This is coming from somewhere, we just need to find out where so we can fix it, and fatten him up!

Now on to the my little man.. he's turning 4 today!!!

I can't believe we made it. There have been so many times over the past years that we really didn't know whether or not we would see this day.

Now that it's here.. we're gonna PARTY!!!

I'll be sure to post pictures later tonight or tomorrow so you can get in on the fun!

It's Gold Ribbon Time!

2009-09-09T21:47:00.014-04:00

I've been somewhat off my game lately, with all the surgery stuff going on.
But I have to remind everyone that it's that time again. September is Childhood Cancer Awareness Month.
There's so much that floods into my mind, so much I could pour out on these pages about the unfairness, the unjustness, the pure madness inflicted by this beast.
I don't even know where I would begin. Those of you who have followed for a while already know how I feel about the subject of childhood cancer.

I hate it. I hate it on a primal level that words cannot adequately express.

I emailed a friend of mine last night to share a story. An amazing lady that i've mention several times before, Mimi Avery. Her son Julian died after 10 months fighting a brain tumor in January 2008. He was four and all he wanted was simply to be five, to go to kindergarten. He never got that chance. They are from Texas but Julian's Make-A-Wish trip brought them to Florida to visit Sea World and Disney World. On the first day of their trip, when they arrived from the airport, Juju was rushed to Arnold Palmer Childrens Hospital after suffering seizures on the plane. He and his family spent time in the Special Care Unit, room 2038 to be exact. The room right next to where V just spent the past week. For some reason all week I was drawn to that room, I didn't even know that it was "Juju's room". But all week I felt this undeniable urge to just "be" in that room whenever I had the chance, I couldn't understand it. It just felt familiar, comforting almost. Once I realized what room it was after we came home, I had to tell Mimi. How incredible, and in the same moment, how heartbreaking.

It's difficult to imagine that such a beautiful child spent the beginning of his "final days" in that room. Soon to have his precious life stolen by the beast. www.carepages.com/carepages/JuliansWorld.

The feelings defy description.

Another sweet friend, Jessica Easley. A precocious 10 year old stricken with rhabdomyosarcoma, who lost one of her legs to the disease several years ago. Thought she had finished her fight, only to learn a few days ago, that as she has been trying to recapture the lost days of her youth, the beast has been overtaking her. Today she is leaving the hospital, going home on hospice. www.caringbridge.org/visit/jessicaeasley.

There are so many more, too many.

I'm not one to take the high road when it comes to these children.

It just plain isn't fair. I don't know what else to say.

Except that childhood cancer kills more children every year than cystic fibrosis, muscular dystrophy, asthma, and aids combined.

EVERY DAY.. 46 children will be diagnosed with cancer.

Currently there are between 30 to 40,000 children undergoing cancer treatment in the U.S.

In the U.S. almost 3,000 children will die from cancer this year.

In the last two decades only ONE new drug has been approved for the treatment of childhood cancer.

As a nation, we spend over $14 BILLION dollars per year on the space program, but only $35 Million dollars per year on childhood cancer research.

... the last thought to ponder as you kiss your kids goodnight ...

Right now, this second, somewhere in America, there are 7 children fighting for their lives who will not live to see tomorrow.

Pass it on, spread the word, wear a gold ribbon for all of those who are fighting.. and for those who have fought the beast and now rest safely in the arms of Jesus.

Thanks.

Guess What???

2009-09-08T21:02:00.003-04:00

That's right, we. are. home!!!

After a mere six days in the APH Special Care Unit we finally got kicked out!

Well, it was more like a halting nudge, they did question whether we might be more comfortable staying another day or two.

But DR.P knows all too well that we know how to handle it. We have "been there and done that" more than a few times so we're pretty comfortable going home where we are.

His "funky" heart rhythms seem to have resolved, the desatting episodes have become fewer and farther between.

If anythings comes about we're very prepared. We have a pulse oximeter to keep an eye on his sats and heart rate, as well as a full array of O2 equipment and meds at home.

Other than the IV support there really isn't anything they are doing now that we can't do at home and his feeding is now up to 35 mls per hour. As long as he's fed continuously for now he can do without the extra fluids and nutrients.

We did finally get a glimpse of his incision today and I have to say it looks awesome.

The outer incisions beauty really makes it look like such a simple thing. If we weren't told about the internal staples and hardware I never would have guessed.

For the moment he is calm and content. Pain meds on board. Looking forward to a real bath in the morning. A weeks worth of sponge baths just don't do the munchkin justice.

Thanks again for all the love and support, it sure does make the tough times easier to bear.

Wahoo...

2009-09-06T21:45:00.002-04:00

My little munchkin is all the way up to 20 mls per hour of Nutren Jr. through his new Gtube!
I confirmed with surgery today that he does indeed have internal staples in his stomach, so advancement will continue to be s l o w...
If you recall, he wasn't allowed to begin feeds until he was three days post-op which means that including NPO time before surgery, he hadn't had anything in his belly for 4 1/2 days.

They don't want his stomach stretching any until they're sure the muscle has healed. He has a terrible history of his incisions opening up (dehiscing), after surgery. So slow it is. As they slowly increase his feedings, his IV is slowly being reduced. Hopefully within the next two days he will be at full feeds, or what "full" will be for a while. Once we reach that goal and he can tolerate it well, we can go home!

He had a pretty good day today. As long as his pain meds were kept on schedule he stayed comfy and happy. He isn't able to sit up to play but we still had a few giggles and his awesome smiles. For now he is content to have me next to him so we can play a hearty round of peek-a-boo.

Sweet dreams everyone!

Special Thanks

2009-09-06T00:42:00.003-04:00

Goes out to our buddy LC and her Mom at http://www.littlelcboomboom.blogspot.com/

For all the good loving you've been sending our way!

Go check out the award they passed along to my little man. It's definitely unique!

Big thanks to all of you who have been loving my boy! You're the best!

Saturday Night Update

2009-09-05T23:16:00.002-04:00

Well unfortunately still no pictures, Daddy came with the kiddos tonight but in all the commotion getting out the door he forgot. I have to be grateful that he did remember to bring me something to eat!
He took some pictures on his cell phone but I won't be able to post those until we are home.

Today his heart rhythms were much better (all those prayers are working).
He's still bradying down periodically but the episodes have spaced out somewhat and aren't lasting as long.

The IV that was placed in his ankle last night only lasted the day :(
By this evening the IV pump was reading occluded and although they thought they had it working, he wouldn't stop crying afterward. We gave him a dose of pain meds to help him relax and when that didn't help I started looking. The IV site was wrapped with coband (that self adhesive wrap) so it wasn't visible. I started thinking maybe it was too tight, when I unwrapped it I saw that his whole ankle was swollen and hard. The IV had infiltrated when she tried to fix it.
She (the nurse) really tried to get a new one but eventually ended up calling two NICU nurses to get it.
Four tries later it was in.. ugh.

His feedings started this evening, at a big 5 mls per hour! He's now up to a solid 10 mls and doing well. He also started back on his motility meds.

Shows how much I trust our surgeon Dr.P., I never really asked details about what took place during the surgery. Turns out he placed a layer of stomach staples inside V, under the superficial layer of sutures. This helps to explain a little about why he's been going EXTRA slow with progressing him.

Looking forward to our first metal detector..lol.

Oh well, matches the metal in his sternum.

Midnight update..

2009-09-05T00:35:00.004-04:00

Ok, it's 12:30am but...

The bradycardic episodes have continued off and on all evening. After a couple of minutes he recovers on his own so for tonight we watch.
His night nurse was nice enough to reset the limits on the monitor alarms so that I can try to get some rest. Silly me still up on the laptop. Bad Mommy.
It is nice not to have to keep getting up to press the "silence" button every 30 seconds.
She promised she would keep a close eye on him (they can see everything from his monitor at the nurses station).

It finally happened, his IV went bad a few hours ago... *sigh*
When I told his nurse to "be prepared for a tough time", she obviously took me seriously. She excused herself and returned with a NICU nurse and let her place the new line.
All in all it wasn't too traumatic. This lady was good, she finally got one in his ankle.
Looks uber uncomfortable, but he's not complaining.

Now he's passed out snoozing and I'm on the computer perched in front of the monitor as it's NOT alarming anymore.

Go figure.

Guess I'll try to take advantage of it and get some rest.

Thank you all so much for loving my boy!

Quick Update

2009-09-04T17:49:00.002-04:00

Just wanted to check in and give everyone an update. Unfortunately the feeding for today was put off until tomorrow.
By late this morning the "funky" heart rhythms were back. Less episodes of desatting but he's been bradying down quite often which he hasn't done since the day of surgery in recovery. They attributed the episodes to anesthesia, but the one's today are obviously not.
Dr.P wants another day of monitoring before we try to move on to feeding, so i'm keeping my fingers crossed for tomorrow.
Otherwise he's been awake and interacting more often and requiring less morphine which is good considering the heart issues he's having today.

Sooo... Momma's trying to keep him entertained and not go too stir crazy staring at the monitor all day. Daddy hasn't been back yet, he had to pick up the kids at school. Yay! for the three day weekend! Maybe we'll have some visitors tonight.

Thanks again for checking in.

Darn it, still no camera!

2009-09-03T22:01:00.004-04:00

Well, still no pictures. Daddy forgot. I have to forgive him though, he's handling all the kids alone this week. School, doctors appointments, everything.. gotta love that man.

Things are stable. He's had a few episodes of desatting into the 70's, no more funky heart rhythms this afternoon, but he still has to keep them on their toes. That's my kiddo.

He's been able to space out his morphine to about every 3 to 4 hours so he can be awake more often. Daddy brought Ryan, Kalei and Alissa to visit for a bit after school and he loved it.
He smiled for the first time in two days.

Thank goodness his IV is still holding and after he was cathed last night he started peeing on his own.

Wound care came today and brought us some special dressings for the old site. One that is made with silver (as an antimicrobial) and Mepilex to cover over that. We're going to try that overnight and see how it looks in the morning. I haven't seen the incision site yet on his belly. The dressing completely covers it so i'm hoping the doc will be changing it soon as it's pretty bloody and i'll get a chance to look at that. With his history of infections with incision site's I don't think they want to expose it too soon.

The plan is also to begin feeding him tomorrow as well. We'll start VERY slow feedings and see how he tolerates them. That will begin to give us a better idea of how long we'll be staying.

Thanks for checking in on us, I will update as soon as we know more.

It's Finally over, Sort Of

2009-09-03T00:20:00.003-04:00

Sorry I wasn't able to update earlier, it's been a busy day.
We arrived for surgery at 7am this morning. V was something else, he danced and ran all over pre-op. He peek-a-boo'd me half to death. I was wiped out. But happy that he was able to enjoy his final pre surgery hours.

Just before 9am the surgical nurse came to escort V back to the O.R.
As always she put out her arms to carry my little snuggle bug to the back, and was greeted with an enthusiastic.. No!

He was decidedly NOT interested.

After some sweet talking he finally agreed to go but he was going to walk like a big boy for the first time. So I put on his little red socks with the sticky treads and off he went. Holding the nurses hand and waving bye bye with a big smile.

I was kicking myself for forgetting the camera... Grrr!

Daddy's going to bring it tomorrow.

Surgery took close to two hours and he stayed in recovery for nearly that long after.
The PACU advised me that any time they tried to stimulate him awake his heart rhythm became "funky". So they decided to wrap him in a warm blanket and post a "hands off!" sign while he slept off the anesthesia.
Due to the funky heart episodes Dr.P wants him monitored more closely so he was admitted into the Special Care Unit, an ICU stepdown.

No complaints here. Not only is the Special Care staff uber capable of managing V's recovery, but the rooms on this unit are basically medically glorified hotel rooms... comfy.

V on the other hand is NOT at this point comfy. Dr.P opened the lower half of his belly and removed the GJ tube and closed off the original stoma. He was only able to close it on the stomach level, the skin depth of the tract will have to close on it's own. The skin is way to jagged to suture. He sent for a consult for wound care to see us tomorrow.

Just below that he placed the new G tube. For now it's just the long tube that's sutured in, but it looks really good.

He did wake up after we got into his room and was in pain. He immediately tried to roll and pulled his belly sutures causing some scary bleeding, but it's slowing.

For now he's getting morphine every 2 hours and tylenol with codeine as needed, so his pain is under better control.
He is also getting zofran for nausea, benadryl for the morphine itchies, and his beloved prevacid.
Plus he's getting two antibiotics.

He did have to be catheterized this evening after not making urine for 8 hours. He's been on fluids all day and got a huge IV bolus but no dice. They did wait until after the morphine dose to do it so he didn't really seem to mind it much. I'm sure he's more comfortable now, he really needed to pee. Hopefully things will fall into place there.

We're watching his IV since supermom forgot to remind anesthesia to place two lines for access. The one they did manage to get is SUPER positional in his wrist and we've almost lost it a number of times. Usually they always place his lines in the O.R. to lessen the torture factor as V has very little peripheral access left. I hate to have IV's placed on the floor. They really do try but after they fail over and over, they usually have to call in a NICU or flight nurse to place one in some ultra uncomfortable spot... ugh.

The plan for now is that V will be kept NPO (nothing by mouth) for two days, then they will gradually start feeds and when he is able to handle them well we can go home, barring any complications. Dr.P has assured me that he's learned his lesson when it comes to V. Take it slow!!!

I really like him.. alot.

Hopefully I'll be able to get some pics tomorrow, say a prayer for a peaceful night. I'll update again in the morning.

Sweet dreams and thank you so much for all the love!

It's Almost Here...

2009-09-01T21:00:00.002-04:00

Tomorrow is the big day. We will wake up at 4:30am and head for Arnold Palmer Hospital for Children. We've made this trip so many times in the last 4 years. It almost seems unimaginable.

The hospital surgery department liason called this afternoon to update V's chart. She commented more than once about how calm I seemed about the whole thing. I told her that I am no where near calm, it's just that we've done this so many times before, it's just a part of life now. Still scary as hell, but a part of life.

We've come to know every inch of that place. It's become like a second home.

*sigh*

So tomorrow morning we will make the trek once again, bring our son "home" again. Trust that when we pass him over into their capable hands, all will be well.. again.

I was a bit shocked when the nurse mentioned that Dr.P has a full 2 1/2 hours set aside for V's procedure. We knew it wasn't going to be a simple surgery, but wow.

I guess considering his history I shouldn't be surprised. They've learned by now that nothing is ever routine when it comes to my baby. I'm glad they are prepared to take their time and get this right. We need this to work. HE needs this to work.

It's going to be a tough week all around. With the kids in school, Daddy has to make sure they get where they need to be while I tend to the munchkin. Wish him luck.

I would love to have done this a month ago during the summer but since V's surgeries have to be done in the cardiac O.R. with the cardiac surgery team, you go when they say you go.

Believe it or not, there's only one pediatric cardiac team in central Florida.

If it can't be handled here, all the heart kids have to go down to Miami Children's.

So.. when they say "jump".. we "jump".

Say a prayer for my baby please. Prayers for a smooth surgery and a quick recovery. Pray that this works.. please.

If he handles everything well we should be home by the weekend. I'll do my best to keep everyone posted.

Good Times...

2009-08-30T21:55:00.011-04:00

.....Mmmmm o - r - e - o.

Noah...

2009-08-26T23:04:00.003-04:00

This is a request for love, asking all of you who believe in the unwavering power of the almighty to work miracles in this life.

For a few months now I've been quietly following a sweet little munchkin known simply as Noah..

Noah has the most amazing blue eyes, full of expression and wonder.

On April 20th of this year, those lovely eyes almost closed forever.

On that day, a day like many before, his parents Erin and Mike dropped Noah off at daycare.. not knowing that this would be the end of life as they knew it.

On this day Noah's daycare provider got angry, maybe she was having a bad day, who knows..
who cares.. all we know is that she took out her anger on Noah.

She shook the then 5 month old, almost to death.

Since that day Noah's parents have been fighting for many things. For their son's life, for his recovery, for justice.

Recently, Noah's Dad asked for prayers for his son once again. It's understood that Noah suffered brain damage from his attack. However, there was hope that with time his brain might heal. That he may be able to come off of the large doses of anti-seizure medications that he takes and finally be able to blossom.

Unfortunately Noah's parents didn't receive the news they were hoping for. Noah brain hasn't made the transition they had hoped it would. Not only that, but he will require more and stronger meds for some time.

Erin and Mike know just how lucky they are to even have their son after such a vicious crime.
But somehow they can't help but hope for the miracle that their baby boy's brain will recover fully. How can you blame them?

If you would like to learn more about Noah and offer his Mom and Dad some much needed support, please visit them at http://www.noahsroad.com/.

You'll be enchanted for sure.

It's Scheduled

2009-08-26T20:16:00.003-04:00

Vincentio's surgery has been scheduled. It's going to happen on Wednesday September 2nd.
He's going to have his GJ tube removed and the stoma will be surgically closed, since we all know that bugger won't close on it's own.
Then Dr.P will find an appropriate site to place a new stoma for a new G tube. If all goes as planned this site should heal normally and we will be able to return to gastric feedings.

Now this isn't going to be a simple process. I was hoping maybe they could do it laparascopically, but that isn't the case.
Dr.P will be opening his belly going back through the lower part of his diaphragmatic hernia repair scar. This will be the second time that this area has been reopened. He does feel that it's safer all around if he does it as an open procedure given V's history for having some tricky anatomy.

The healing will take longer for sure, he'll have to stay in the hospital for at least a couple of days, but if it works, we'll manage.
The folks at Arnold Palmer have always been wonderful to V. They are so on top of pain control and making sure he's comfy and happy all around. I have to say I really trust these people.

Still, I have to admit, I'll be crossing my fingers the whole way. We can use all the luck we can get.

P.S. Sorry I haven't posted any school pics.. to say the least it's been a "traumatic" week for Ryan. He's s l o w l y coming around to the idea so maybe I can get some happy face pictures soon. I hope.

He's Not a Baby Anymore

2009-08-24T22:32:00.003-04:00

Oh I know he's ready, it's just that I don't think I am.
My six year old bundle of energy, Ryan, started kindergarten today.
I've known for some time now that he REALLY needed something more. School's been a callin' for months. He needs the extra stimulation, his little mind is more than ready. But today wasn't easy. He was crying when we left him in the classroom and he was crying when we picked him up after school.

*ugh*

I hope tomorrow is better. I would have some super sentimental "first day" pictures, but he wouldn't let go of me long enough to get any.

Guess I'm gonna have to try for some "second day" pics.

I know it'll get better. I know eventually he'll run off from the car without even looking back, and when he does I'll long for these days.

Don't wanna bring the post down, just please say a prayer for all those out there who's babies, excuse me, big kids, aren't boo hooing their way through the first day of school.
Because they are in Heaven, or on treatment, or just too fragile to share a classroom.

In many ways it's a tough day for us Mom's.

(I'll try to get some ultra cute, non boo hooing pics of my big boy tomorrow).

Decisions...

2009-08-23T22:27:00.006-04:00

To update on my previous post, Annette had a fairly quiet day today. Her parents, Natalie and Kirk, have had some unimaginable decisions to make in a very short time.

They have traveled this road before. They know cancer and it's ferocity.
They have seen one child consumed by the beast already. Now Annette.

Sweet, precious Annette is heading toward home soon. Later this week her parents will be bringing her home on hospice. They feel that they have done everything possible to save her life, and unfortunately, fate has made a choice for them that no parent should ever have to make.

The painful truth is that Annette is dying.

What her family wants at this point more than anything is to allow her to live out the remainder of her young life at home, comfortable, and surrounded by those who love her the most.

They have decided to go home with Annette and in her final moments among them, create their own miracle. The kind that can only come from the strongest of loves.

I simply cannot imagine anything in this world that could be worse than what they are facing at this very moment.

No parent should ever have to bury their child... http://www.maxeyweb.com/

The Maxey Family

2009-08-22T14:23:00.005-04:00

As much a it hurts to ask, I must request prayers and love once again for a family in crisis.
Little Annette is not yet a year old, but for most of her life she has been battling an insidious brain cancer called AT/RT (atypical teratoid rhabdoid tumor). The cure rate for this type of tumor in children is often less than 5%.
Annette's family attacked this cancer full force, with every option available to save her.
This is all too familiar for them, five years ago yesterday (August 21,2004) they were forced to say goodbye to their first daughter Madeline. She also fought and lost her battle with rhabdoid cancer. Madeline also lived for only a year.
After Annette's diagnosis her parents underwent genetic testing and found that there is a genetic link to this type of cancer. Fortunately, their older son Grant did not inherit the gene.
However, Annette has been massively attacked by this monster. Recently, after another round of radation and chemo Annette stopped responding and had difficulty breathing. It was found that she suffered swelling in her brain caused by the very medicines that were meant to help save her life.
After weeks of searching for options to reverse this damage, yesterday, on the five year anniversary of Madeline's death, they were told that Annette has virtually no brain activity.
They do not believe this to be reversible.
Annette's family has endured more than any family ever should. They are rightfully devastated.
Please visit them and their precious baby girl (at www. Maxeyweb.com) and offer some love.
They can use all the prayers we can give.
They deserve a miracle.
cancer sucks.

Bliss, I tell you.. absolute bliss.

2009-08-21T00:31:00.007-04:00

I've never really posted about it, I guess because it's never been a blogland issue. But the fact of the matter is that after V was born I had to leave my job, we had no family capable of helping with childcare, and daycare germs were a definite no no.
So, after he was born, living on one income, we moved from our spacious 3 bedroom 2 bath home into an apartment. It was an adjustment, but we made it.
Then, thanks to an unforgiving economy, Carmen lost his job of 10 years and we were forced to give up the apartment.
Ever since then we have been existing, as a family of 8, in a 26 foot motor home.
Not exactly what one dreams of as they grow older in life, but better than a tent in someone's backyard, right?

(I try to look on the bright side and remember how many people nowadays really ARE living in tents, and worse)

Needless to say, between all of us and all of Vincentio's medical equipment, things get a bit cramped and more than a bit noisy around here.
But right now, at 12:38 am, everyone (except the dog) is sleeping peacefully.
I have to say that as much as I love the bustle of my children's lives, THIS is bliss.
Sheer and absolute quiet. Doing not a single solitary thing other than making the perfect cup of coffee to enjoy in my perfect quiet little house.

... and dreaming of the day that my "perfect quiet little house" won't be on wheels anymore.

sweet dreams :)

The Ties That Bind...

2009-08-19T00:27:00.005-04:00

I've recently read some very heartfelt posts that my blogging friends have written regarding their connections to the Down Syndrome community.

For those of you who have read my most recent posts (ok, novels) about Vincentio's story, you know most of it already.

Still, I felt as though I needed to add a post to the topic.

You already know how V entered our lives.. with a bang.

We had no idea that he had DS, or any other congenital issue for that matter.

We were blessed from the very start that he was born in a hospital that was equipped to handle his delicate heart. They were so very supportive. Too much sometimes, every time I thought I had it together, they made me cry all over again.

The strange thing was that I wasn't crying because my son had Down Syndrome.

I was crying because I was scared to death that he might die.

You see, V was a preemie. Tiny and frail. His heart was damaged, his lungs were damaged. Something wasn't right with his blood.

The people that surrounded us those first hours, days, weeks, were amazing folks indeed.

They kept him alive, they kept us going, they gave us hope.

But somehow it always came back around to "how are you adjusting?"

Don't get me wrong, I was grateful for their consern and caring. It's just that I wasn't worried about how he was going to grow up and how we were going to deal with raising a child with Down Syndrome.

I was worried about whether or not he would live at all.

I was worried that I would never GET the chance to raise my child with Down Syndrome.

I guess the fact that he was so sick from the beginning gave me a different perspective.

I specifically remember a day when I sat in the NICU trying and failing once again to feed my son. Asking the nurse to hook up the feeding to his NG because it just wasn't happening. I felt defeated in that moment. Like there were just too many obstacles. That maybe it was just too much.

As I sat there, rocking V, a group of doctors came to give discharge instructions to a young couple a few beds down. I remember that they were very young. 19 or 20 maybe. This boy was there first child. He was big, much bigger than most of the babies in the unit. I could never quite understand why he was there at all. He seemed so normal.

The docs stood there, counseling the parents on how there son's care would work once he was discharged. Turns out he had Cystic Fibrosis. He would require weekly clinic visits, multiple daily meds and therapy. They told this young couple that it was in their best interest to not have any more children, that CF was genetic and they could pass it on. That more than likely he would, due to the severity in his case, be hospitalized often. More than likely he would need a double lung transplant within 3 to 5 years, and even then he would only live into his 20's.. if he was lucky.

How's that for a kick in the teeth. Your first and only child is going to live a miserable life and then die way too young.

I decided then and there that I could live with Down Syndrome.

Not only live with it, but be absolutely grateful for it.

If they could fix his heart, heal his lungs, make him well.. all the rest was cake.

Down Syndrome wasn't just something I could live with.

Most importantly, it was something that HE could live with.

That was all that mattered, that's all that has ever mattered.

We Were So Close

2009-08-16T22:28:00.005-04:00

So Dr.B (GI) and I spoke about a week ago. He was interested in my opinion as to whether I felt that V's stoma would tighten up around the GJ tube. Ultimately he wants to get him back on gastric feeds like before.

I told him that V is definitely putting on weight which is great. That was a major struggle up till now. His skin is also looking better than it has in months.

However... that naughty stoma just WILL NOT seem to close.

In my opinion, I think that he is going to need a surgical revision. This stoma is not going to close. So if it's going to have to happen, we might as well get it done while he's healthy and infection free. He agreed and told me to call Dr.P (surgeon) to get him scheduled.

We have a consult scheduled for August 24th to get the surgery scheduled.

Then this morning... "IT" happened.

For once the kids slept in, I was in bliss. My five year old, Ryan woke me up around 9:45am because he wanted breakfast.

I got up to fix it and when I walked by V's bed I saw it. Bile, soaked all into his shirt.

At first I cursed the old standby, the med port. It must have opened when he rolled over.

But the med port was closed.

Wait a minute.. this tubing is way longer than it should be... Aaaahhhh!

The whole stinking button, J tube and all was pulled out and curled inside his onesie!

... OH ... MY ...GOD!

So we made it to the ER at about 12:30pm.

He was in the OR by 2:45pm.

We were on our way home by 5:00pm.

Not too bad, we made it home in time for Sunday dinner. If nothing else good came out of today, surgery was able to get a hold of a shorter GJ this time so he has one in that actually fits now.

We were so close. So close to getting this resolved without any real drama.

That would have been a first. Oh well, what would our lives be like with no drama?

Vincentio's Story / The Meaning Of It All

2009-08-14T23:26:00.007-04:00

So I'm back with the continuation of our story as promised. It's been so many days now since I've left off.

I'll try to make this novel of mine a bit more concise since I'm basically exhausted. There are a few aspects of life here on the farm that are unknown to most, simply because some family business just isn't fit for public consumption.

Mostly because I like you all, and I wouldn't subject anyone I really liked to it.

Ugh, needless to say, I'm tired.

So... where to begin?

When I left off we had just been told of V's "mass" at the base of his right lung.

The doctor arrived shortly after my brief and unpleasant exchange with the nurse to let us know that he really didn't know what it was. A CT scan was ordered for confirmation.

The CT showed that this "mass" was in fact, my son's intestines and liver inside his chest. It was filling most of the right thoracic space and collapsing his lung.

Theory is, that he had a Morgagni congenital diaphragmatic hernia at birth, but the defect didn't fully open until some time after his open heart surgery. From the stress of having such severe RSV.

It needed to be repaired ASAP, but after such a severe case of RSV, anesthesia is out of the question for at least six weeks. So we brought him home on a full 2 liters of O2 and more monitors than I care to remember.

It was like walking on eggshells. I don't think I slept much that month but we made it. During presurgery testing they also found a blockage in his duodenum that would have to be opened.

The day of surgery I was nervous of course, but I thought if we made it through open heart, we could get through this. I had no idea what we were in for.

After the procedure, all 3 surgeons involved took us into a side room and layed out a number of photos. They were pictures of Vincentio's insides. The defect in his diaphragm was huge. You could look up through the hole and visualize his heart and both lungs. The surgeons all commented that they had never seen a child with such a large diaphragmatic hernia live for so long that way.

They asked for permission to use V's surgery photos for medical research.

The recovery part was truly nightmarish. His scar extended from the middle of his chest (they reopened part of the open heart scar) down to his belly button.

In the short time it took to move him from recovery down to ICU he was crying in pain. He was given more morphine, but before report was finished to the ICU staff he was in pain again. His dose was increased. During that first night, his morphine was increased two more times and fentanyl was added as well.

His chest tube to reinflate his lung was really big and obviously uncomfortable, after four days it was decided that the tube could be removed. Not long after, his O2 sats began dropping rapidly. An x-ray showed a pneumothorax had occured and there was a fair amount of air surrounding the outside of his lung. If it wasn't addressed the lung would collapse again.

There was talk of reinserting the tube but one of the docs had heard of using high flow O2 to help the body reabsorb the air. We decided to try and he was placed on 10 liters by mask. This stayed on for a total of 14 hours.

Vincentio is an avid thumbsucker, so he was NOT a happy camper during the whole thing. To avoid another chest tube, I became "super entertaining keep your mind off your thumb and keep your mask on mommy" for a really long time. It worked though, after 14 hours my man's lung was good to go.

He was finally discharged home after 11 days. The first couple days home we uneventful, then on the third I noticed what appeared to be a string in the center part of his incision. I figured it was a leftover stitch that would dissolve.

Within a couple more days the area around the stitch looked to be opening. To my absolute horror, I realized his incision was opening and we were seeing the subcutaneous layer of sutures.

.... gasp....

Dr.P saw us pretty quick and when he used a scalpel to cut the stitch hanging out, he knicked the skin and a gush that looked something like guacamole came shooting out of the openeing. V had a pocket of infection under the skin that had caused it to open. Dr.P had to open the whole center of the incision to drain it then he packed it and sent us home.

We have to do what???

For nearly a month we had to clean this hugh hole in his belly and repack it twice a day. Finally, after several weeks it was closed enough to simply bandage over, then after six or so weeks it closed completely. To this day it's not an attractive scar, but it reminds me of just how strong he really is.

I know grown men who would be brought to their knees by that kind of pain on a daily basis.

During the repair Dr.P fixed the hole in his diaphragm, pulled his intestines out and replaced them side by side (Ladd procedure) to correct a malrotation from being in the chest for so long. He pulled his liver back into place as well and reinflated his right lung. The blockage in the duodenum couldn't be opened so a bypass was performed there.

That is what causes V's "stomach" issues to this day. He eventually required a Nissen Fundoplication for intractable vomiting and a G tube for "failure to thrive". Many heart babies have trouble putting on weight, but V's intestines were also traumatized and they don't seem to absorb nutrients as well now.

You all know the rest of tha G tube "drama" that has followed.

Since his GJ placement in July, he's gained several pounds and actually looks almost chunky for the first time in nearly four years! His skin looks good too, but due to some other factors Dr.P doesn't think his stoma site is viable anymore, so on August 24th we'll have a consult to schedule a revision.

That's Vincentio's story so far, far from over. It's not just a Down Syndrome thing. It's a Congenital Heart Disease thing, a Congenital Diaphragmatic Hernia thing, a G Tube thing, a "failure to thrive" but I'm Still A Survivor thing, and more than anything...

It's a story of how one little boys strength can bring an aching family together and make them whole again.

He's really something, so keep watching, keep reading, keep enjoying life with us. There's surely lots more exciting stuff to come!

Newsflash!

2009-08-13T00:56:00.003-04:00

To follow yesterday's post..

No leukemia for Miss Zoey. She is officially still in remission.

Damn God is good.

stay tuned....

Storming the Gates...

2009-08-12T01:04:00.004-04:00

This is a bit of a sidetrack to my current "life story" expose of late, but it's a very important one. Those of you who have read my older posts know how I feel about childhood cancer.

(insert expletive)

One of our new friends is in need of some serious, hard core prayers today. Zoey Grace Needham is a super sweet little bucket of love I've had the priveledge to follow recently. She's a fellow Ds darling who also happens to have battled AML leukemia. She recently completed 6 grueling months of chemotherapy in her trademark style. Now after just barely being able to return to a happy, cancer free life she is once again undergoing a bone marrow biopsy today (WEDNESDAY) to see if her cancer has relapsed.

How I hate the "R" word.. in all it's forms.

Please stop by her blog "Little Wonders-Heather.blogspot.com" and experience the wonder for yourself. Leave Zoey and her family some words of encouragement and please, please pray that Miss Zoey is still cancer free!

Vincentio's Story / The Continuing Journey

2009-08-07T21:37:00.011-04:00

V's open heart surgery took around 6 hours to complete and when we were called back to the cardiac intensive care unit we were incredibly relieved. His repair was successful. He was lying naked in a tiny bed covered by a warming light. His nurse was waiting in the room as we arrived to help explain what we were seeing. Although I did have some extensive experience working in a hospital, seeing all that equipment on your own child is just completely different.

The nurse calmly explained every tube and wire, beginning on his head and working toward his feet. He was kind and took all the time we needed to be comfortable with what we saw on our son. We were advised that the bone marrow sample was collected and that testing would take about two weeks.

He would remain in the CICU to recover for as long as he needed to be free of all equipment and major pain meds. They also wanted to see him tolerating feedings well too. They said it would probably be around ten days.

The CICU staff was wonderful, not that the others in the hospital weren't but up until now so much emphasis had been placed on helping us "adjust" to our son's genetic diagnosis. Strangely enough I was never sad or angry. I never once had a "why my child?" moment. He was just my son. Whatever package he came in, I was elated to have him.

Don't misunderstand, I know everyone handles these things in their own way, and they are entitled to their feelings. It's a natural process and there's no right or wrong way to go about it. But so many people were focused on the down syndrome that I began to get angry that they weren't more focused on his health. If you want to feel sorry, feel sorry that his heart is sick, feel sorry that he can't breath well enough to even eat. Feel sorry that at 5lbs he has to have his chest cut open and his heart stopped and there's a very real chance that he won't survive it all. Feel sorry for what might kill him, not for what he has to live with. As far as we were conserned down syndrome was something we could deal with, losing our son was not.

.... back to the story....

I was stunned and really impressed that he was off the ventilator that same day. He was off morphine and fentanyl within two days. The third day he was eating well and only requiring tylenol for pain. He was a different child. Born again.

That night I felt comfortable going home to sleep for once and the next morning I awoke to a phone call from the CICU that V was being discharged! Are you sure you're talking about MY son? He only had major open heart surgery four days ago!

Yes, he had successfully met all the required milestones and was exceeding them! He was ready to go!

Seriously???

Seriously.. later that evening, day four of recovery, our baby was home. He was warm and pink, he was breathing (without sounding like he had a chest full of gravel), and most amazing of all. He was awake and hungry.

We were still very nervous about the impending bone marrow results but each day that passed without word made me a little more secure that things were going to be alright.

Around ten days later we received word from the hospital that his bone marrow was clear. Once again this mysterious blood issue has resolved itself. They were referring to it as "transient leukemia", which is when the blood differential appears to be leukemic but resolves without treatment.

We were advised that childern with Ds were more likely to develope leukemia and those with "transient leukemia" were at a much greater risk.

Something we would need to watch and be prepared to deal with in the future if necessary.

Unnerving to say the least, but I was happy to have him home and healthy.

This was November. For several months Vincentio thrived, it was an absolutely amazing transformation, he was so alive in every sense of the word.

By January 2006 we began to see some disturbing changes starting to happen. V still had a hearty appetite, but now most everything he ate came back up. His breathing was also not as easy as it was before.

Dr. D was quick to check for the return of CHF and impaired heart function but this was not the case. She referred us to a pediatric surgeon due to the fact that it wasn't a cardiac issue. Plus, he had developed what appeared to be a bulging hernia at the base of his chest incision.

The surgeon (DR.P) said that the hernia looked to be simply a cosmetic issue from tissue not closing properly after surgery and he would prefer to close it when V was older. After several tests he also diagnosed the vomiting and breathing problems as being reflux related and V began acid reducers and a motility medication.

Aside from alot of puke and ruined clothes, he was holding his own until later that summer. In the summer he caught what seemed to be a bad chest cold that would not let up. After a visit to his pediatrician who found his O2 saturation to be only 86% after two breathing treatments, we were sent to the ER. He was given more nebulizer treatments and several tests. They came back showing that V had RSV. He had his last synagis shot only two months before and it was decided they were no longer needed. They were wrong.

He spent 10 days in the hospital and after the RSV tests came back negative we still could not get him off oxygen. Clinically he was getting much better but he still required a full 2 liters of O2 to keep his sats up. It was decided that he would be discarged with O2 at home. Before the discharge could be processed he had to have a chest x-ray to confirm that the RSV was gone.

We weren't overly worried until I walked by the nurses station and was stopped. His nurse told me that he would not be getting discharged anytime soon. Of course I asked what had changed and she said that she couldn't tell me anything more until the doctor came in.

That was the wrong answer...

Needless to say, after some not so subtle threatening, she advised me that all she could do was read me tha progress note in his chart. It stated that his chest x-ray showed "an enormous mass" at the base of his right lung.

Me: "What does that mean??"

Nurse: "I'm sorry I can't say any more, you're going to have to wait for the doctor."

Me: "What???"

Nurse: "I wish I could tell you more but I really don't know."

Please stay tuned for the next exciting chapter in the life of my littlest love ......

______________________________

To Heather, I would be honored to have you steal one of my quotes. After all, it was inspired by one of the strongest little men I've ever known.

Vincentio's story / The Saga Continues

2009-08-06T21:55:00.006-04:00

After the paramedics arrived and stabilized V he was transported to the nearest hospital which wasn't exactly used to handling children. They were great about making sure he was comfortable and his vitals remained stable. They did perform a series of chest x rays which showed his heart to be enlarged and fluid in his lungs. The ER doctor was fairly confident that he was suffering from pneumonia and began IV antibiotics.

Soon after they called Arnold Palmer and requested that he be transported by their mobile ICU as soon as possible. Unfortunately, there was only one vehicle at that time and it was all they way in North Florida on another emergency. We were told that it would most likely be several hours and for the ER to call again if his condition began to deteriorate.

After six LONG hours he was finally transported and he was directly admitted to the pediatric intensive care unit. The PICU allowed us back with him after about 30 minutes and the doc was waiting to explain the reality of what had happened.

V was in fact in massive congestive heart failure. His heart was very enlarged, his liver and lungs were full of fluid. He commented several times that we were very lucky that this happened during the daytime when we were able to see it . If it had occured at night he probably would have passed away while we slept.

After a week in PICU and with many new meds on board, we were discharged home and advised to see his cardiologist within the next two days.

Dr. D (our cardiologist) had us in the next morning and rechecked his weight and vitals. Even with some residual fluid still in his organs he was weighing in at 5lbs 8oz. Much smaller and younger at barely 5 weeks old than she had wanted him before surgery.
She upped his dose of digoxin and lasix and told us to return in one week for a follow up.

At our next appointment it was determined that his lungs and liver were not responding well, despite the meds V was still struggling. His weight was down to 5lbs 3 1/2oz and he wasn't breathing or eating well. She increased the digoxin again, to the maximum allowable dosage, and increased the lasix plus added another diuretic as well. She told us that his meds were now maxed out and the next weeks follow up would be the deciding factor as to how we would proceed.

That next week his weight was down again to 5lbs even. His breathing was extremely labored and his color was worsening by the day. As soon as Dr. D entered the exam room she turned around and left again. Moments later she returned to tell me that she had called for the mobile ICU for transport to the hospital again. She said he would be admitted to PICU again and would spend the next several days being stabilized for surgery. Doing it now was definitely more risky but we had no choice, he was dying.

Four days later, after many, many IV meds and tube feedings to help him gain some strength, he had his heart repair. It was November 8, 2005 and he was 7 weeks old.

The day before surgery he had many blood tests done due to the fact that he would require transfusions and to prepare for the surgery in general. The morning of the procedure Dr.D approached us about signing a form allowing a bone marrow aspiration to be taken from his sternum when it was opened.
His blood differential was again way out of whack and they were beginning to question the possible onset of leukemia.

We agreed and he was carried away to surgery a few moments later. We were stunned and numb somehow all at the same time.

More to come...

Vincentio's Story / Part Deux...

2009-08-04T22:14:00.003-04:00

Little man was in the special care nursery for the first three days of his life and I was safely tucked in my bed on the OB floor attached to my sweet pump - o - pain reliever. By the second day I did realize that as good as morphine is, it makes me itch, and with a belly full of staples incessant scratching really isn't a desireable afteraffect. So.. bring on the benadryl.

To say the least I was doped. It's due to this fact that my first few days as a Down Syndrome Mommy were spent babbling aimlessly as my friends sat vigil at my bedside. I'm told I was pretty funny though.

On the second day I was wheeled down to the special care nursery to see my bundle of love up close and personal for the very first time. He was so beautiful from what I was able to see of him, all swaddled from head to toe.

He was tiny but at 4 pounds everyone was impressed at his size for being a preemie. At this point in time he was relatively tube free other than the NG for feeding. I was told that he had not yet developed a sucking reflex so I was encouraged to pump milk for him that he could be tube fed.

The staff in the nursery was wonderful, they were understanding and kind. They even made me cry a time or two. I couldn't have asked for better people to be surrounded by. I was lucky and I knew it.

On day four I was finally sprung and released to go home.. without my baby. Even though he was basically stable at that time, leaving without him was harder than I thought it would be.

That night at home I didn't sleep. How was I supposed to sleep without him? For over seven months we had slept together and it wasn't right that we were apart.

The next morning we awoke to a very calm phone call from the hospital letting us know that V had been moved during the night. He was now in the neonatal intensive care unit. Sometime during the night time he had become very pale and his breathing had become labored. He was quickly moved up to the NICU, blood cultures were taken, and he was started on oxygen. We were told he had stabilized and was sleeping peacefully.

... holy crap...

We quickly made our way into the NICU to check on our boy and found him sleeping soundly with his newly aquired O2 and more than a couple needle stick marks. Poor baby.

The neonatologist was in shortly after to tell us that he was not in congestive heart failure as they had feared, the blood cultures came back showing no infection but it did show some unusual types of cells in his blood, not the number of cells but the type. He assured us that they would recheck it in a couple of days and not to worry.

My next several days were spent trying to master the industrial strength breast pump that the hospital had graciously offered us to borrow. This was a feat. My other children were champion nursers. This plastic sucker was a tough one. It wasn't overly difficult to operate but just somehow really uninspiring. Achieving let-down was no easy task. The nursing staff was sweet, happy even for a few drops. "Any little bit works wonders" I was told.

Still, I felt massively inadequate, but I kept at it.

A few days later during our daily visit I excused myself to visit the "rose room", a quiet room solely reserved for pumping mothers. There was only one other Mom in the room who happened to be a hospital employee. She was pumping for her eight month old at home and it was obvious she has NO problem with her milk production. I sat meekly pumping away trying to distract myself but the sight of her gushing into that bottle was too much to resist. Apparently it was just what I needed, after a few moments I felt the let-down of my milk for the first time ever and emerged victorious from that room sporting TWO full volu - feed bottles. Even my husband was impressed.

Later that week V had another "episode" requiring O2 and stat blood cultures, and again his cell differential was a consern. Within two days they were testing normal again like the time before. I would later realize this was just the start of his normal abnormal.

These episodes continued throughout his stay in the NICU but his differential always reverted to normal within a few days without intervention. Imagine that, my kiddo was doing something medically strange and out of the ordinary.

He remained in the NICU for a total of four weeks, until he was able to have his NG removed and was able to take all his feedings by mouth. He already met the 4 lb weight requirement so feeding was our only real obstacle. He began to take full feeds by mouth on a Wednesday and on that Friday another ECHO was done to check his heart function and it was surprisingly good. We were told that if this trend continued we could have him home by the following week. Yipee!

We were quickly scheduled for infant CPR classes that would be a requirement for his discharge and had all of his prescriptions filled and ready. We would have to bring them to the hospital and show the nurses that they were filled accurately and we were able to dose them correctly before we were allowed to leave with him.

V was given a six hour car seat test where the baby is placed in the car seat and hooked to a pulse ox for several hours to be sure that they can maintain proper O2 levels while being transported. He passed! Woohoo!

Discharge day finally arrived the next Monday and it only took us ALL afternoon to get out of there but they were thorough. Can't argue about that.

The neonatologist mentioned that he hadn't eaten as well the night before but it was probably a fluke, they offered to keep him another day but I was ready and we were outta there.

When we arrived home he was just as they said he would be.. very sleepy. We were given an eating goal of 15ml's every three hours. We had to stick to it and if he wasn't cooperative we had to return to the hospital. The next two days were spent creating strategies to wake him up so that he would eat. What we were so sure we could handle (after all it's only 1/2 an ounce every few hours) was quickly kicking our butts.

I finally found that if I undressed him and rubbed a cool cloth over him he would get mad enough to wake up and eat a little. It worked but he always pooped out before the 15ml goal was reached.

On day three he was sleeping when we woke up and since his feeding wasn't due yet we decided to head for the grocery store for some breakfast goodies. It was just down the street and would only take a few minutes, so off we went with our little bundle covered up and secured like Fort Knox.

No germ would penetrate my fortress. We got more than a few strange looks but I've never been one to care much what other people think. I was ready to protect my munchkin at all costs.. and so we shopped.

About 20 minutes later we got back home and as I was unloading our groceries Daddy was trying and failing to wake V for his next feeding.

I told him to try the naughty washcloth trick which he did. It didn't work.

What? It always works, not always very well, but it always gets him mad.

Well not this time. I walked over ready to scold Daddy for not doing it as well as I do when I noticed something was different. V's eyes were still closed but they were rimmed in an ashy shade of gray. So were his lips.

Daddy was convinced it was bad lighting so he carried V over to the window and took off his onesie in an attempt to arouse him. When he undressed V I just about lost it. His entire back was mottled and his skin was a deep shade of purple. As Daddy carried him and rubbed his back it was obvious that his breathing was slowing, and came in awkward sharp motions. I called 911.

It was Wednesday, only two days after they told us his heart was functioning well. Only two days since we began our journey as a complete family all together, and I was watching Daddy do CPR on my love as he laid on the coffee table in our livingroom.

Stay tuned.. more to come...

How Did You Know???

2009-08-04T00:11:00.005-04:00

I find myself in these past couple of weeks looking for exciting blogging goodies as our usual medical fiasco's have taken a sudden turn for the boring.

I've read many blogs of parents with Ds kids and how they first found out, and so I figured I would share my own experience.

My pregnancy with V was very unexpected to say the least.
All of my pregnancies were very unexpected, so nothing new.
My Mom used to call me "fertile Myrtle".

Anyway, all of my pregnancies have been considered "high risk" from the start due to the fact that I suffer from systemic lupus. So through them all I was poked and prodded, ultrasounded to the extreme, and generally under super human scrutiny.

Aside from some expected kidney issues and my blood platelets hovering near the critical range (the unfortunate norm for me), my last pregnancy was really my most unevenful.

I had all of the standard screening blood tests and nothing ever came back out of the ordinary. During one of my many ultrasounds his arm length showed a tiny bit short but I was told that even a few days off on the conception date could account for that, so no worries.

All was hunky dorey until my 32nd week when I showed up for work and within an hour, I knew something wasn't right.
I'd had braxton hicks contractions before and this wasn't it.
The pain was deep in my back, I had premature labor with all my kids (another gift from the lupus) but was able to control it with meds and bedrest until near term.
I wasn't panicked, I was even a bit shocked that I hadn't felt it before now.
I had to inform my boss who immediately pulled her car around to the front of the building and advised me that we were heading to the hospital NOW. I didn't argue.
She helped get me admitted and called my husband to let him know.

The nurses knew in pretty short order that I had done this in the past and we started the usual IV meds to put a stop to the contractions. It worked, and fast. Within an hour I was contraction free. They decided to monitor me for a few more hours and would then send me home to vegitate for a at least another month or more hopefully.

At around 11pm a nurse informed me that the OB doc had written my discharge orders and I was free to go.. are you kidding me???
You want my husband to wake up three little kids and come pick me up at 11:00 at night??

They took mercy on us and since the floor was pretty quiet they said I could rest for the night and he could pick me up in the morning.

Somewhere around 1am I woke up for my first trip of the night to pee.
When I was finished I stood up and suddenly felt a gush.
HOLY CRAP! I knew what that was, but in true me fashion I grabbed a towel and cleaned up my puddle before calling the nurse.
First she asked if I was certain that it wasn't urine, and then scolded me laughingly for cleaning the whole thing up since thay couldn't use my puddle to strip test for amniotic fluid.

I obliged her need and lost a little more right there in the bed.. how's that for service. I do aim to please.

Of course it was positive and since they were not prepared to handle a potential preemie delivery, I was redlighted downtown to Arnold Palmer women and childern's hospital.

During my initial admission they weren't overly conscerned, they even thought they might be able to hold me off for a while... NOT.

After more than a few failed attempts to stop my labor they realized that this baby was coming and they'd better get ready.

Moments later, as I was moved to a delivery suite, V's heart rate began to dip dangerously low with each contraction. The doc figured it to be stress from the contractions and wanted to try to replenish my amniotic fluid to give him some more cushion. An IV tube (without the needle) was gently threaded up into my uterus and each time I contracted and lost fluid, they pushed some back in. Sounded good, even worked some times. Not for me.

Still more decels in his heart rate so they decided to add a scalp monitor to the mix to get a better reading. Hint: It doesn't go on MY scalp.
One more piece of wiring up my @&$^. Needless to say I was uncomfortable. To make matters worse, I was advised that any pain meds would lower his heart rate even more so thay would not be allowed. An epidural was also out of the question in my case due to my lack of blood platelets and my low clotting factor. Yay!

A short time later they realized the situation was progressively getting worse and a C-section was going to be needed. I was given an injection to stop my contractions since there was no need to have them at this point.
It didn't work, and neither did the second one. By now I had gone from extreme discomfort to downright screaming pain.

Thank God they were able to get a surgical room quickly and gave me the gas. I've never been so happy to have a big black mask on my face EVER.

Sometime later I remember a brief passing in the hall and touching V's little hand, but I was blessedly drugged up. They had to do an "old fashioned" C-section (midline) incision instead of a small bikini line cut due to bleeding issues and I was left with quite the impressive scar and 15 staples holding my gut together.

Whoever inveted the morphine PCA pump is going to heaven. That's all I have to say about that.

The next morning I awoke in my drug induced fog to one doctor after another arriving to "prepare" me for what had taken place.
Apparently the signs of Ds were fairly apparent at birth so the array of necessary testing had already been done.

The geneticist came to tell us why she felt he needed to be tested. Outward appearance, low muscle tone, and the single crease across one palm. She said he didn't possess all the possible traits, but enough to warrant a blood test. We half heartedly agreed due to the fact that our third son also had the single palmar crease at birth and is totally "normal". She agreed that was unusual but insisted on the test anyway.

Next came the cardiologist. She was amazing. She explained that she had already done extensive echocardiograms and they all showed and ENORMOUS VSD. It was located in a odd position behind a major valve and that was the only thing slowing the shunt of blood between the ventricles. Therefore he was not currently in heart failure but he would be before too long. She calmly went over all the synptoms of CHF that we would begin to see and how to handle them. She was hopeful that with proper medication and treatment we could hold off surgery until he reached at least 10 pounds in weight and four months old. He was currently 4lbs.
She explained that at 10 lbs the mortality rate for the surgical repair he would need drops drastically, and at four months of age the brain is better developed and can more easily handle heart-lung bypass. So, that was our goal.

Stay tuned for part 2...

More of me to love...

2009-07-31T23:16:00.006-04:00

It's obvious that Mr.V is my primary blogging subject, as he often provides the exciting blog worthy material in our lives. However, there are FIVE other children and a cute Daddy that also occupy my days.
Today since our normal crisis ~ lull ~ crisis merry go round is currently in the lull stage, I thought I'd clue you in to the rest of the brood.

First and tallest I might add is my sweet, hormonal 16 year old William. My first baby and probably the most like me in the fact that he's the consumate night owl, he love, love, loves anything chocolate, and has had his mop of hair almost every shade that crayola has imagined.
Will is the more introverted, emotional type. This has caused some stress in the schooling department therefore he has chosen the homeschool route this past year and has done remarkably well.

My second oldest and the one who looks the most like his father is my Justin. He will be 13 in another month. He is excitable and absolutely obsessed with all that is wrestling. Not that I even remotely understand the infatuation, but he does love it. He is my blonde haired blue eyed ball of energy.

After him comes my oldest step-daughter (not that I even think of her that way) Kalei. I've been a part of Kalei's life since she was a toddler so she's pretty much just another one of my kids. She's nine, and has recently entered the world of pre teen angst.. fun. She looks like her Daddy, let me tell you. She was in her younger years what we all considered a champion napper. Kalei would nap anywhere, anytime which made for happy, stress free days. Now that she's school age that happy napper instinct hasn't faded, and last year when her teacher began sending home a series of notes that Kalei was napping right through most of her lessons we realized that her napping so easily and now at seemingly inappropriate times, might really be the symptom of someting bigger.
Sooo.. a few months back we did the whole array of testing which led to a sleep clinic study and the diagnosis of pediatric narcolepsy.
Since then miss Kalei has adopted a rigid waking, napping and bedtime schedule per doctors orders, and daily doses of a stimulant called provigil to help her stay awake during school hours.

Next comes my youngest step-daughter Alissa, she is six. Alissa is blessedly simple. She is quick and sharp, she listens when spoken to and rarely argues. She is a great kid, not that my others aren't, it's just that she's fairly "issue" free.

Then there's my Ryan, my five year old who spends his life teetering on the verge of ADHDness. he is one rapidly evolving bundle of life. Ryan is not a sit down and watch TV kind of kid. He craves the outdoors, he loves any game that involves running and jumping, and he has the best imagination.
I'm super excited to see where kindergarten leads him this coming year. I'm already dreading the impending "first day" separation, but I'm really excited for him.

Lastly but not leastly (is that a real word) is the Daddy.. at least to the last four of the brood, and my partner in life, love, and desperation for the past six years. Carmen is younger than me, six years younger to be exact, and still manages to act like he knows more than I do. I do the "wifely" thing and let him think he's right most of the time. OK, I don't. Not really, and that makes for much of our daily banter. He's a know-it-all and I'm a "Oh no you didn't" kind of gal. Somehow it still works. We like to keep things interesting.
Carmen is my other medical mystery. Shortly after lil V was born he began having strange symptoms involving his hands and eventually his feet as well. Pain, numbeness, tingling. Loss of sensation, ice cold extremities and still more pain. Something like an electrical shock at times is often what he would describe. Over a period of months these symptoms became more severe and debilitating since his job required the use of his hands and fingers. Carmen is an electrician.
After months of suspicions and testing he has been diagnosed with peripheral neuropathy, a degenerative nerve disorder. Most people who develop neuropathy have some type of other medical disorder like diabetes or cancer. Carmen has neither.
After exhaustive tests his doctor referred him to a pain management specialist to help control the symptoms. Since then we've been through the gamut of "routine" medications and are daily battling to keep it under control and still allow him a level of functional ability. It hasn't been easy but we keep trying. Lately he's been going through somewhat of a "mourning" period for the life and abilities he no longer has. It's been rough, and now with the loss of his job and insurance it's taken a turn for the worse. All I have to say is thank you PPA. Without them he wouldn't still receive his meds and we would be in a bad way. All in all, life has become a work in progress, but we're getting there together.

Then there is my sweet lovely, my runchkin of love.. my V.
You already know him.. he's self explanatory here.

I'll work on getting some pictures up of my house full for you all to adore.

Baby Jail

2009-07-27T21:46:00.013-04:00

Every now and again the runchkin needs a time out, not because he's naughty but just because Mama has lots of kids and sometimes even supermom's run out of steam.

As you can tell, at first he was pretty bored with the idea...

Not to fear he's the master at self entertainment.

Either that, or seeing me passed out on the couch from "let's keep track of the toobie" game all afternoon, was funnier than I thought.

This 24hr feeding business is working alright, but making sure the lil man

doesn't manage to rip it out of his belly with all his new found energy of late is quite the ordeal.
Oh we have the teeny tiny backpack and all but somehow he still seems to wiggle out of that contraption and tries to leave his super fuel behind.

That is the ultimate no no, can't have that.

So.. sometimes for the sake of my sanity, there's mandatory jail time for my love munchkin.

Oh the horror.. I must run free....

Ok, maybe I'll win you over by blowin' some kisses...

Being cute is super exhausting, isn't it?

Yup, that's my baby.

On the medical side of things we're actually still doing well, he hasn't had any major bile output from his g port for several days now and I'm cautiously filled with hope that we're on a better track.

I'm still watching closely as there seem to be times that he will go for a few days and be seemingly normal then out of nowhere the bile returns.

I STILL haven't heard anything from Dr.B's office about the GI study and in my book no news is good news, but with this malrotation issue, I know if it's not a full volvulus the symptoms can come and go. Because of this, if there didn't happen to be a rotation happening at the time of the study the bowel will look normal.

Not much else to do but wait and see, and try to enjoy our "normal" time and HAVE.. SOME.. FUN!

Depends and the Dinosaurs...

2009-07-26T00:37:00.007-04:00

I'm boring, that's right. I have no earth shattering medical emergency to detail today.

We went to the movies and saw Ice Age 3D and it..was..awesome.

I laughed so hard there were times i actually praised the heavens for good bladder control.. it was THAT funny.

I'd pay to see it again if i wasn't broke now, really.

It's amazing what one normal day in the scheme of things can do for you. Mentally, just being able to take my kids to the movies even with the hum of the feeding pump and the dozen or so stares from well meaning but nosey folks at the theatre, it was great.

I went WAY overboard buying candy and popcorn. There's still half a bag on my counter. Of popcorn i mean, the chocolate didn't last the first half hour of the film. I have a weakness.. don't judge me.

I probably could have bought a few days worth of groceries with the money i spent at the movies today, but man we had a good time!

GI Study

2009-07-22T21:14:00.006-04:00

So I've been waiting patiently, he he (NOT).. for this GI test to get here.

On Monday we went and had the lovely barium sqwoohed through the g port of lil man's toobie and we watched the fluoroscopic magic.

Guess what the doctor told us???

Nothing! Yeah, major letdown.

Well, not completely. She did say that she didn't see any major blockage, but I wasn't expecting one.

He's still tolerating his J feeds, and he's pooping, so things can't be totally blocked.

Still, it's not normal to unexpectedly start backing up bile like he has been.

Like I told the doc, one day he puts out maybe 200cc the whole day, then the next day it's 200cc an hour!

Not really normal, right? She didn't think so either.

So.. We fluoroscoped and we x rayed and we giggled and flirted with the nurses. Ok, he flirted.

Doctor B. should have the results soon.

The whole thing was pretty anticlimactic really but I'm glad it's over.

We'll see what happens next. As for now he's working hard on chunkin up.

His stoma looks half way decent now which is a MAJOR improvement over the last several months, and we're just trying to enjoy the lull in the action.

Barring anything earth shattering Dr.B wants to continue our current course of action for another 60 days then we'll reevaluate.

Ultimately he wants to get back to regular g tube feeds and lose the J, which is fine with me.

He can't rule out the possibility of a site revision in the future, but we'll cross that bridge when we have to.

For the Love of Armstrong

2009-07-21T19:49:00.009-04:00

Army was a sweet three year old boy, that's right.. I said was.

He's gone now, he was taken by a monster called cancer.

So many of our friends have fought this beast and way too many have lost.

Army lost his battle to a brain tumor (Glioblastoma Multiforme), an aggressive, almost impossible to survive brain tumor.

He fought long and hard, but Army never had a chance. The monster was just too strong.

He passed away just a week before his Make-A-Wish trip to Disney World.
Armstrong and his brothers were looking forward to making memories for a lifetime, but his life ended too soon.
Now not only did they lose a brother, they lost a dream along with him.

A very special friend of mine, who up until now has remained nameless, is Mimi Avery. Mimi lost her son Julian to the beast when he was only 41/2. It was Mimi that I posted about a while back when I told of my friend who was placing her son's gravestone instead of attending his kindergarten graduation (post dated June 4). She is truly an amazing woman.
Mimi desperately wants to see Army's family get the wish that he wanted for them.. to see Disney World.

She and some other wonderful people are trying to raise funds to send them on the Make-A-Wish vacation that they never got to take.

If you would like to help or want to find out more please visit the Carepage of Mimi's son "King" Julian at www.carepages.com/carepages/JuliansWorld. Believe me, once you've been there, you'll never be the same.

It was one year ago..

2009-07-18T21:53:00.006-04:00

tonight, that I held my Mother's hand and helped her through the transition as she left this life for the next.
She was the one of the most amazing people I have ever had the priveledge to love and love her I will.. always.
As devastated as I was that night, I felt an incredible sense of honor.
She brought me into this world and nurtured me. Now, I was there to help her as she left it.
There are moments about that night that I wish I could forget. Images of my Mom in that bed that I never wanted to see. She had suffered. Beautifully, with the utmost grace, she had suffered, for too long.
How does someone so strong come to this end?
It wasn't fair, it wasn't right that she had to go.
Still, she was tired. She was ready, whether I was or not.
So I was there, I cried, and I loved her all that I could in those hours..
and at 11:55 pm on July 18, 2008.. I let her go.
As I laid there next to her in that bed I watched as she took her last breath, I held her tightly as her heart slowly stopped beating.
She was finally free, finally whole again, and I was left in pieces.

Now a year later, as I look back on those hours, I wouldn't trade them for anything. She was my strength, and for once I got to be hers.

I love you Mom.. all the way to Heaven.

Ooohhh... Aaahhh...

2009-07-16T21:49:00.003-04:00

Oh.. My.. Goooodness..

I'm starting to itch.

God help me.

Why I'm Missing

2009-07-15T20:23:00.004-04:00

To answer the question that my dear friend CH posed...

I'm not in the pictures at the beach for two reasons.

1: I was taking the pictures

2: The lobsterfied parts of my anatomy lie below the waist, hence the previous post titled "toasty buns". It wasn't used solely for the cuteness factor.

Although I could give you a mental picture.. um.. no.

Probably not healthfood for the psyche.

Anyway, the swelling in my lower half is still pretty frightful, i've been led to believe by some well intentioned advice that i've suffered a bit of sun poisoning.

I wouldn't doubt it. I have old lady "kankles".. you know when your calves go straight into your shoes?

I'm pretty swollen alright.

I have to admit though, the sympathy help from my better half has been much appreciated. He's not usually one for the kind hearted sweet stuff, but the horror of my burntness and seeing me walk like I have no knees has brought out his softer side.

I'll take it where I can get it. I'm not proud.

As for the little runchkin, his gastric outputs have been way over the top all day today. I'm looking for a better way to set his g port to drain. All we have is a small plastic drain from the hospital and it does the job, but when his output is this high it's hard to keep up without it overflowing.

I'll apologize now to anyone in this area who had to step over the huge green puddle of stomach ooze that was left in the Albertson's parking lot earlier today.

Couldn't be helped.

If any of you have experience with this and can give me any bright ideas it would be much appreciated.

I wish Tuesday's GI test would hurry up and get here already.

Finally the Beach Pics...

2009-07-14T22:36:00.009-04:00

And finally the aftermath..

My sleepy pink lovemuffin...

Still Crispy

2009-07-13T22:21:00.001-04:00

I am crispy.. not just burnt folks, down right crispy.

I will get pics from the infamous beach fun tomorrow, promise.

I wanted to let you all know that the Gi doc has V scheduled for the GI study next Tuesday the 21st. For now he's holding his own and continuing to tolerate his J tube feeds and we're using lots of aloe to help get Mommy moving again.

Went to the appointment today and had to squeeze into a pair of jeans..

.... Oh My Lord ....

Why you ask would I torture myself this way???

Because every time I expose my toasted legs to the sun and hot air, I feel like I am absolutely going to burst into flames!!

Ugh.

Toasty Buns

2009-07-12T22:34:00.002-04:00

Short and sweet tonight...

Went to the beach...

Had a blast...

Lil man loves, loves, loves the beach!

Much needed and well deserved.. but Mom got burned... bad.

Ouch.. Ugh... Ouch... Ugh... Ouch!

Cutest ever pics to follow as soon as I can move without cringing...

You don't wanna miss em'...

Gonna go medicate myself and try to sleep without moving.

Wish me luck.

More to Consider...

2009-07-11T00:26:00.003-04:00

I spoke to our Gi doc, Dr.B the other night after a scare with a blocked J valve. I had his on call team page him at 9pm and God love him, he called me in about 5 minutes!
He walked me through it and we were able to relieve the blockage.. in his words.. "crisis averted".. whew!
He asked about the amount of bile that V's still putting out in the drain and when I told him he was very uncomfortable with my answer.
According to him the bilious drainage should have stopped by now and V should no longer be drain dependent.
We go in Monday for our discharge follow-up and he's going to schedule him for a contrast study.
Due to his congenital diaphragmatic hernia (a Morgagni diaphragmatic hernia to be specific), he also suffered a degree of intestinal malrotation and blockage. It was repaired with what's called a "ladd's procedure" during the hernia repair but Dr.B's worried that he may be suffering some sort of chronic malrotation again.
So... we scan. It will be scheduled during Mondays visit so I'll keep you all posted.

Finally Home

2009-07-09T00:16:00.003-04:00

Yes folks, we have officially been discharged.. yeehaw!

Yup, I'm from the south.. can ya tell?

We got home late last night with a butload, um, can I blog that word??

Ahem.. alot of prescriptions. Seven new ones to be exact, in addition to our list of home meds already being given.

Most of them are to be given in small doses four times a day and not all of them can be given together. Needless to say, I picked up a day planner while I waited at the pharmacy. I haven't had to plan his meds around the clock like this since our pre heart surgery days.

As long as it works, after all this.. I'll do it. I'll do it and I'll like it.

Damn straight.

As for now, he's on 24hr J tube feeds and he seems to be tolerating them well. So far we can only get to 40ml an hour but it's working. He's getting nutrition and I'm happy, he's happy too.

Monday we go back for our follow up and Dr.B's planning on setting him for a contrast study. He's still having larger than normal bile and gastric outputs into the drain even though he's taking nothing by mouth yet and the Dr. feels that he's not moving things through properly. Maybe through the duodenum where he had a bypass surgery during his diaphragmatic hernia repair. We'll see. For now we're replacing the output overage with pedialyte so his electrolytes don't get funky.

That last night of IV meds seems to have kicked the mystery rash. To keep it away we have a few weeks of oral meds for that too.

For the moment I'm just going to try to enjoy our weekend and not stress too much.

Sounds good, huh?

Still here

2009-07-05T21:27:00.003-04:00

Well we're still inpatient at APH. This morning GI came to check him out and thought we may be able to go home. The nurse and I were both worried as to how I would continue to drain his G port at home and he just said we could go home with the same type of drain he's wearing now, but he wanted us to begin periodic clamping and draining to see if he could tolerate it without all the bile spilling out around the GJ tube. Our nurse felt uncomfortable dicharging him if we were still experimenting with what he's able to tolerate.

I agreed.

He agreed also and said to update him toward the end of the day as to how he handled the clamping and draining.

It didn't go well so he decided not to push it and it turned out to be a very good decision.

Later in the afternoon, during a dressing change I noticed a strange rash across his stomach and back that wasn't connected to the GJ tube breakdown. The nurse looked at it and immediately paged the doc who ran up to see it. He's now on a new IV antibiotic. They aren't totally sure where it's coming from but we'll try this IV med overnight and see how he looks in the morning.

They've also started to supplement his regular IV fluids with a bolus every hour to match what he's losing in bile drainage.

Ugh.

On a positive note, he was able to get up and walk a little today. He's very wobbly and off balance but he seemed to think it was funny. Every time he'd stagger and tip over, he would grab my hand and let out the sweetest giggle. He's really an incredible kid.

Daddy came last night and brought the other kids to visit, then they walked down to see the fireworks. I'm glad they didn't miss it. Not exactly the 4th of July I was hoping for (lil man loves fireworks), but I'm glad we got to spend some time together.

As for now he's resting. The last dressing change hurt him pretty badly so he got an extra dose of pain medicine and he finally seems comfortable.

Good night all...

Long overdue pictures of my sweetums

2009-07-04T21:15:00.008-04:00

Moving in the right direction

2009-07-04T13:31:00.006-04:00

The doc came in a few minutes ago and reviewed his status, they seemed pleased that he is now retaining the formula in his intestine. Since they lowered the rate and added the Eryped we haven't seen any more leaking from his stoma. One battle won.

Now the conscern is the bile and stomach acid that continues to leak.
Apparently with the J tube in the small intestine it stimulates the bile production and that's what is causing the drastic increase. They desparately want his skin to heal so the objective now is to get this drainage lessened as much as possible. Right now the G port is still attached to a drain and we're having to empty it often in addition to what's leaking out around the button.

That means another med. Reglan will be added today to the Eryped to help with the gastric emptying so that the bile doesn't just sit there in his stomach and leak.
They are also switching his Zantac to Prevacid which is a stronger antacid, so when there is leakage it's less damaging.

The issue with the GJ button being too long is something we're going to have to deal with, apparently they don't make a shorter one. Doesn't make a whole lot of sense to me but that's the deal. Nothing we can do about that one.

Guess we're just going to continue to have to be creative with the gauze. As long as we can get this drainage under control and continue to keep him nourished, I can handle everything else.

Down the road the hope is to heal his skin and possibly save this site and put the regular Gtube back in or maybe resite it if neccessary.

For now he's on 24hr Jtube feeds. He's perking up finally and getting closer to being his old self again. We're handling the pain of dressing changes with premeds to keep him comfortable and so far it seems to be helping.
That's another huge load off my mind, I hate to see him in pain.

He'll get his Eryped and Reglan 4 times a day, and once daily Prevacid added to his regular meds and we'll pray for good results. We may even get to talk about going home in a couple of days.. woohoo.

Happy 4th everyone and keep watching.. cute lil man pics coming later today!!

It's gonna be a night...

2009-07-03T19:32:00.002-04:00

Daddy just left to go sleep at home for the first time tonight and the lil man has decided that he wants nothing to do with any of this anymore.

Go figure...

In the last 15 minutes he's emptied his G drain all over himself, diconnected his IV (don't ask me how), and pulled off his ID band.

Ughh.

We took off the gauze around the GJ tube to apply his cream earlier and green bile and acid literally shot out of his stomach. I ran and got his nurse Jamie (God bless that girl) to let her see. I need a witness to show these docs that I'm not exaggerating, this is profuse. The pain this poor kid suffers every time I touch his site is immense and unbearable.

Say a prayer please...

Absolute Craziness...

2009-07-03T15:31:00.008-04:00

Sorry about the lack of updates, it's been crazy. We went in Wednesday morning for surgery and I knew that Dr.P wasn't going to like the look of him. After two days the stoma still wasn't closed and it was very raw. Sure enough he cancelled the surgery. He can't place a new gtube site towards his midline because of a previous surgery scar so the only place he could have gone is to the left around the area of the current site. It is so raw and broken down in that entire area that there's no viable tissue there to put it.

Plus to top it off it's infected now too.

*sigh*

His solution at the time was to replace the tube with a different kind and prescribe some topical cream to try to heal the acid burn and infection causing the breakdown.

My question was what do we do if this one leaks like the button did??

He said to bring him back and they would admit him because we've exhausted our outpatient options.

So we were home by 10am.. and by 8pm we were back being admitted because he was leaking like crazy and was so dehydrated that he couldn't stand anymore.
They tossed around several scenarios from an NJ tube to a GJ tube to even considering ditching it all and going to TPN for a while.

Ultimately they started IV fluids and the following morning he went to surgery for a GJ placement. When he came out they had drains hooked to both the G and the J ports to drain any stomach contents and they are draining like mad. Last night they started J tube feeds very slowly and left the G port to drain, upping the amount by 5cc every two hours. Every 5cc they up the feed, they reduce the IV by 5cc. By this morning he was at 50cc per hour on the J feeds and at 6am he started pouring out a mix of bile and formula. They reduced the feeds to 40cc and started a new med called Eryped. Apparently this med is used for kids with short gut syndrome and it's supposed to improve motility, it's actually a low dose of the antibiotic erythromycin but if it works I'm all for it.

So far he's holding at 40cc per hour on the J feeds although they did have to increase the IV fluids a bit to compensate but that's ok with me, he needs it.

They placed an IV in his hand during surgery (a feat in itself) and another in his ankle for backup so we're covered for access.

As of this evening we're doing the "wait and see" dance..

If he continues to tolerate the J feeds..

If he stops leaking bile and acid around the tube site..

If these meds can get rid of the horrendous infection around the site and help his digestion improve..

If we can find a wound care treatment to finally give him some relief..

Right now he's very thin (down to 21lbs from 251/2) and very weak, but he's beginning to have some smiley moments here and there. This hospital has a great child life team, they're doing a great job trying to keep him entertained in between the procedure induced crankiness.

I'll try to remember to have Daddy bring the camera tomorrow so I can get some pics of the lil man.. he's still cute as ever, even when he's miserable.

Thank goodness for pain meds, they are my new best friend.

My Heart is Heavy

2009-06-30T01:07:00.007-04:00

Because we've lost another of our amazing friends...

Pablo Thrailkill Castelaz will be laid to rest today, June 30 2009.

He left this life as he entered it .. beautifully, gracefully, in the loving arms of his Mommy, Papa, and dear big brother Grady.

Your fight is over sweet pea, we wish you love and peace.

Six years just isn't enough.

It's been a long day...

2009-06-29T23:07:00.005-04:00

So V's surgeon called this morning and he's scheduled for his Gtube revision on Wednesday. He ordered us to pull out his mic-key button today in preparation for the procedure. Fortunately he does eat and drink orally but not alot. It wouldn't matter anyway, because everything we do mangage to get down him comes pouring out of his stoma.

It isn't pretty.

He's fairly uncomfortable and our efforts to console him are leaving something to be desired i'm afraid. As long as i can manage a bit of motrin every few hours he seems most comfy just laying on his pillow on the couch... the dog appears to enjoy the company too. He still manages a few good kicks to her noggin every now and then, so she feeling pretty much at home.

It's an odd relationship they have.. but it works for them.

Anyway, at 6am Wednesday morning we report to APH and hopefully we will leave with a healthy toobie. Most likely we'll be there overnight so they can keep a close eye on their handiwork.

I'm crossing all my fingers.. and toes that this works.

I'll get some pics of the lil man as soon as our camera is up and running again. Say a little prayer for the toobie gods to grant us smooth sailing.