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.

Room 201 Pt. 2

We are home bound today! Kenji got his new broviac in on the 28th and Pittsburgh is still on. Our flights and hotel reservations are all made. Another piece of good news is that Kenji got approved for private duty nursing thru the CAPC program. Woohoo! Also, I created a Facebook page for Kenji. It'll be easier to keep everyone updated with his journey than finding time to write a blog post. Find him at Kicking It With Kenji - SBS Style. I will add the link later when I get on my computer.

Happy 1st Birthday, Kenji!

Today is Kenji's first birthday.  He is still in the hospital battling 3 bacterial infections and a fungal infection but that's not stopping him from smiling.  

So, with the line being infected with 4 different organisms, the line is considered "damaged" so it had to be pulled out.  And since Kenji is such a hard stick and his peripheral IVs don't last him very long, he ended up having a Cook Catheter put in for the time being till he gets a new Broviac.

Watch my baby grow!

Kenji, what will mommy ever do without that handsome, adorable face and those fluffy cheeks?  I love you booger!

And...

Yeah!  The other one has not cut through yet though.

Room 201 Pt. 1

Saturday (3/9) was a busy day/night for all of us.  Kenji went to bed around 10:30ish.  I was done with the night and headed to bed at around 1ish and he felt warm to the touch when I kissed him goodnight.  I took his temp and he was 102.4.  I told DH and we left for the ER.  Blood cultures and labs were done (like usual) and he was given a tylenol suppository to help the fever.  We were admitted and we didn't get a room till about 7am.  I was so mad and tired.  Like seriously?!  Kenji's blood culture grew a Gram Negative Rod bacteria (nothing specific yet).  So he's getting 2 types of IV antibiotics to treat that.  And today we find out his culture also grew yeast (nothing specific yet either).  AIYAYA!  So another antibiotic is added to the list. The plan is to treat it thru the line first for a week or so.  If that doesn't do the trick then his broviac will have to be pulled...AGAIN!  His blood count and platelets are dropping dramatically too bc of all the labs and cultures that's being done.  He will be getting a blood transfusion here in the next few hours.  Ok, that's it for now.  I will update soon.

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!

Farewell 2012 and Hello 2013! Much needed...Update!

2012 was one hell of a roller coaster.  I need time to heal from everything that occurred but Kenji's my primary focus right now.  I will get my time once Kenji's health and medical condition is under control.  I hope 2013 will bring nothing but health and prosperity to everyone... especially Kenji.

So my last post, Kenji was still in the hospital being treated for Staph.  We were there for about a week then was discharged home and to continue his antibiotics every 6 hours at home.  Well, not even a week and we ended back in the hospital again when he spiked a temp of 103 again.  Labs and cultures were done and he was put back on multiple antibiotics again.  Come to find out, this time around, he has a yeast/fungal infection.  With this being his 2nd line infection within less than a month, his broviac needed to be pulled.  So, Kenji was transferred to the PICU, sedated, picc line inserted and broviac pulled.  After he was stable he was transferred back out on the floor.  Kenji spent Christmas and New Year at Presby Hospital in room 212.  A week passed and his cultures were still positive for yeast...and now Staph too!  His Picc line had to be pulled now too in order for the antibiotics to clear the infections so 2 peripheral IVs were put in...one in his neck and one in his right hand (that didn't last but a day) and now in his left foot. 

Due to the circumstances, our PA trip was once again cancelled bc the Peds are saying we will be here for a good 2-4 weeks.  A new date has not been set as of yet.

Pleaaaassseee...say a prayer for my sweet boy.  Thank you!
I'd also like to thank our nieces and nephews for spending the holidays with us at the hospital.

Merry Xmas from Kenji!

Happy New Year's Eve!