Friday, July 31, 2009

More of me to love...

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.

Monday, July 27, 2009

Baby Jail

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!

Sunday, July 26, 2009

Depends and the Dinosaurs...

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!

Wednesday, July 22, 2009

GI Study

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.

Tuesday, July 21, 2009

For the Love of Armstrong

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 Believe me, once you've been there, you'll never be the same.

Saturday, July 18, 2009

It was one year ago..

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.

Thursday, July 16, 2009

Ooohhh... Aaahhh...

Oh.. My.. Goooodness..

I'm starting to itch.

God help me.

Wednesday, July 15, 2009

Why I'm Missing

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.

Tuesday, July 14, 2009

Finally the Beach Pics...

And finally the aftermath..

My sleepy pink lovemuffin...

Monday, July 13, 2009

Still Crispy

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!!


Sunday, July 12, 2009

Toasty Buns

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.

Saturday, July 11, 2009

More to Consider...

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.

Thursday, July 9, 2009

Finally Home

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?

Sunday, July 5, 2009

Still here

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.


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...

Saturday, July 4, 2009

Long overdue pictures of my sweetums

Moving in the right direction

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!!

Friday, July 3, 2009

It's gonna be a night...

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.


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...

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.


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.