Bad News and Good News

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

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?

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???

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

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

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!

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

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

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

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

sweet :)

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

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.

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!!!

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!

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???

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...

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

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

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..

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

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!

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

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...

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.