Kenji's Small Bowel Transplant Evaluation

We successfully made it to Pittsburgh Children's on our 3rd attempt.  Third times a charm indeed.
As soon as we checked in and got to our room (735) in 7B (ICARE), it all started.  Yes, the minute we got there, the evaluation process started.  Kenji was assessed from head to toe, had a EKG done and blood was drawn.  Various transplant team members dropped by throughout the day to meet and greet us.  We continued our week with xrays, unltrasounds, MRI, and daily blood work.  We also had a 2-3 hour educational session.  It made the whole transplant thing soOo much more clear.  At the end of our stay, the transplant surgeons told us that Kenji has only 8cm of bowel and about 45% of colon left.  The transplant team doesn't think that rehab will help Kenji with that little of bowels left and he wouldn't be a good candidate for STEP(a lengthening procedure); it would take more than 1 or 2 or 3 to procedures to give him enough bowels.  Transplant will be Kenji's best bet for a good quality of life.  We were also told that with his size being so tiny, the wait will be much longer than a adult.  Roughly, 18 months or so.  We are to travel back to Pittsburgh every 6 months for follow up till a donor comes available and after the transplant, Kenji will be expected to stay local to Pittsburgh for at least 6 months.  I will stay by his side during that time and Dad will drive up every weekend or so to be with us.  Dad and I have talked and during our wait for the transplant call, we will try rehab anyways.  Even though the Transplant Team doesn't think Kenji will benefit from it, we still want to try.  As of now, we have Boston Children's Intestinal Rehab center at the top of the list.  It's a matter of saving up money to make it there now :)

I will be opening up a "Hope" fund for Kenji soon.  We will use that account to assist with cost associated with both rehab and the transplant.  I will update again once that's in place.

Feb Recap/Update

I can't remember what day exactly that we came home from my last update but we were not even home for a month and he ended back in the hospital due to a cough and a temp of 102 on 2/16.  The doctors were pretty sure it was another line infection bc that first day, he tested negative for RSV and his xrays didn't show any signs of pneumonia.  So, Kenji got admitted and the blood cultures started.  After 3 days of a negative cultures xrays were repeated and sure enough, pneumonia was present.  Then on day 5, he was tested for RSV again and was positive.  I hate thinking that he caught it in the hospital but whatever.  We ended up staying there for a total of 6 days.

All that sounds like no biggie but this hospital stay was one of our worst experience yet.  

Our first night, Kenji had a TPN overdose.

So, the nurse was priming Kenji's TPN to get rid of all the air bubbles in the line before hooking it up to Kenji.  After she hooked it up to Kenji, she left.  Daddy was holding Kenji bc he was fussing a lot.  After about 15-20 minutes, Daddy told me to check his blood sugar bc he's not acting normal.  His cry was different and it seemed to get weaker and weaker and so did his body.  I tested Kenji and his sugar level was 582!  I did it again just a few seconds later and all I got was "HI" (so his level went off the chart!)  We were a bit confused as to why and what was happening.  Daddy pointed out why the TPN volume was over 2000.  I then noticed the rate was set at 545ml!  His normal rate is 45ml/hr.  So he was getting more than 10x his regular rate.  I figured the nurse forgot to change his rate after priming the line.  I ran and grabbed a nurse.  By this time, Kenji was out and not responding to us.  The nurse placed his TPN on hold and went to call our nurse and the doctor.  He started to respond again after about 5 minutes.  The doc was going to give him a shot of insulin but she didn't bc we didnt want to create another a\problem with Kenji's sugar being too  low.  So, his TPN was turned off and we just let Kenji recover on his own.  It took him about 4-5 hours to normalize his level.  Then his TPN was hooked back up at it's correct rate.

So, with in 30 minutes, Kenji received about 5-6 hours worth of TPN.  That probably equals a bag of lollipops?  or a few pounds of sugar?  **shaking my head**  He recovered after a few hours but it took his body a few days.  After that incident, Kenji could barely move his hands and feet or grasp anything.

Can you say "Super Kenji"?  LOL

Other than that update, Kenji is doing great...especially with the new broviac.  He's so much happier...infection free.  We are still working with PT and OT on his developmental skills.  

I'd love to update more but it's so hard when we're in and out of our "2nd" home.  

Broviac #3

Kenji got his 3rd broviac put in yesterday.  He's doing well.  We'll be here for a few more days for monitoring.  Kenji's having some thyroid issues so they are monitoring his calcium levels too.  Thanks to everyone for their continuous prayers!

Lazy Day

Raining and gloomy...perfect day to lounge around and relax and snuggle.

1 week home

Kenji has been home for a week today.  He already seems to have grown a bit to me already in such a little time.  It still feels like a dream having him home.  

Loving his silliness(he got that from daddy).  

I was informed by his day nurse that he smiled at her today.  He's also bringing his hands together more these days.  PT/OT is paying off! 

Picture Perfect

We're due for a family photo.

Nap in...Nap out...

Kenji napped all day long in and out.  He'll nap for a few hours then wakes up screaming his head off and as soon as you hold and rock him...he falls back asleep.  I need to find a way to make him wake up happily...LOL

Quick snap before lay down to take a nap with my handsome.

He doesn't look too happy...he just finished crying after waking up from his nap.

DH is so silly.  He stared at Kenji for a few seconds and said to me, "We made such a beautiful baby."  Yes, I admit, he's one beautiful miracle!

Joy Rides

Kenji had 2 Dr visits today.  He seems to enjoy the car rides very much.  He falls fast asleep each time we're on the road and he squirms when the car stops.  He was pretty good most of the day.  The only times when I had a hard time with him was during a diaper change or a pouch change.  His pouched was changed about 3 times today.  I think it's not staying on longer than a few hours because we're constantly holding him and moving him around.  So, we're going to try not to hold him as much and see if it'll stay on a bit longer than a few hours.

Kenji smiled when he woke up from his joy ride to the Dr's offices.

 He was not so happy a few minutes earlier during his diaper change.

Rough Start

I was busy running around today so no pictures of pumpkin.  Daddy was with Kenji most of the day.  Looks like he doesn't have a handle on things yet.  He called me panicked because Kenji's bag was leaking.  Tsk tsk.  So I rushed home from the grocery store to change him and yes, I taught daddy how to too.  Kenji's bag was changed 3x today total.  He also had labs done.  He was pretty worn out from all that fiasco so he slept most of the day and evening...about 4-6 hours straight!  

Cranky Butt

It was a good but crazy day.  The day nurse today was not familiar with the TPN pump he was on...so Mommy to the rescue.  We helped each other out and did what we could.  We did everything right except we forgot to put the back flow on so blood started to back up into his lines. I had to call the Clinical Manager to come out and see what we did wrong.  

Kenji takes naps throughout the day but if for any reason he is awaken before he wakes up by himself...he's a BUTT!  He gets really cranky and you won't hear the end of it from him till you put him to sleep again.  LOL So much attitude!

 

We watched Aladdin.

I decided to cover his hands with socks to prevent any further scratching.

Just woke up from nap.

Nighty with daddy.

The Good, Mad and Bad

Today was a good day.  Despite all the fussing Kenji made.  He wanted to cuddle with someone, anyone non stop.  His bag came off this morning and I changed it all by myself with no help!  Yay me!  There's not much that Kenji needs so things are pretty chilled.  Although, let me stress again...HE LOVES TO BE ROTTEN.  LOL  And his auntie is helping him be a pro at it!  But it's all ok...Kenji's THE boss! 

The Good, Mad and Bad...

First Day Home

Last night was Kenji's first night home.  It doesn't look like he notices a change in atmosphere at all.  He sleeps like usual...fusses like always...when he wants to be held or wants his the green paci.  That's a good thing then!  I was afraid he might feel awkward and lonely without all them monitors beeping and without all those attention from all the beautiful nurses.  I gave him his first bath at home with the help of his private nurse then we cuddled for a bit.  I must say...he knows that he's home...exactly where he needs to be.  He fell asleep in my arms.  It must of been about 3am when I took him back to his room.  Here are some pictures of Kenji and the Green Paci!

See those beads?  Those are his Beads of Courage from the NICU.  I used a few to make a "necklace" for the green paci.  I hope he like it.

I hope to keep up with this blog by posting a POTD everyday.  I love sharing my reasons of joy...and Kenji is #1.