4 years post ....

Yesterday marked 4 years post surgery! 

Mt Sinai Part 2

After being told he has roseola, we thought it was over. However, we were wrong... that Saturday another fever appeared again. He was at a high of 101 -- Sunday he was hoovering around 99 and high 100s. We called it in, and on Monday both his ped and liver team talked it out and said it's most likely another viral infection he caught and give him a break. However if other symptoms show - such as vomiting - we need to go back to the ER. Well of course Kyle decided that on Tuesday he wanted to make a trip there. He vomits and is at a high of 103.

The trip to the ER turned into a stay of 48 hours. Although it turned out there was no bacterial in his blood stream -- his liver enzymes numbers were trending high enough to be alarming the day we went in, which had us staying. Great to see his nurses and docs...but def not condition we would of wanted it to be. At the end of the day after several rounds of tests and a few rounds of antibiotics they discharged him saying it was 99% viral. We're going back there Monday for another round of blood test just to make sure all is good and trending down.

The best part -- I guess more for daddy is NFL draftees made an appearance at the hospital day of draft. He got some autographs and a pic of RG3.

More pics to be posted shortly.

A year after...

A year ago Kyle was admitted in the hospital for cholangitis- not once but twice in a month. It was over 15 days staying there. And today, we spent about 4 hours in the same hospital. Lucky it his bili number is .2 over 0 -- so there was no alarm in signs of cholangitis. He does however still had a slight fever and his liver enzymes were elevated-- but they will sent us home, which I'm ever so grateful for. below are pics of Kyle at the hospital-

Hanging outside the ER before getting a room

making faces

when doc said you can go home...he goes byebye

Not a happy camper

waving bye bye

home after ER trip

daddy reading a book

Birth weight double!!!

Finally Kyle is double his birth weight!!! He's 14lbs 7ozs as of today at his monthly check up with his liver team. (still a little short though) Even though he's a little off his developing skills, the np thinks he looks great. Liver is sill enlarged but that's ok cause liver is a remarkable organ and it may go back to normal size as he gets bigger. He's come a long way!
As for the physical therapy part, he's been evaluated by the pt (thx to our wonderful friend!!!), special Ed teacher and nutritionist - results are that he's borderline, so city may not approve for the IE program. He's being evaluated by the OT today. Even though he may not qualify for city funded IE program, he's got some amazing aunties that will help us out. Like his np said he's young and will catch up.

I'll post pics later.

Feeding tube or not?

Throughout the week we've been guessing and saying...he didn't gain any weight; "Kyle, you must drink more formula."  It all came down to the weigh in today at his pediatrician's office. 
We've been very frustrated with the way he's been feeding because he averages about 17-22 oz per day.  To us, that didn't seem like it will be sufficient enough to stay away from the feeding tube.  2 weeks ago, his weight was 10 lbs 14 oz.  We needed him to at least be over 11 lbs.  Carrying him felt like he was getting lighter.  Feeding him formula, he will constantly get distracted and maybe play with it. 

So we go in and the weighing begins.  Before he is put on the scale, the wife and I started to just blurt some numbers out.  Funny thing was that we both blurted out numbers over 11.  11lbs 2 oz and 11 lbs 6 oz.  So the weighing begins and weight was 11lbs 6 oz.  Exactly the date of his birthday.  Pediatrician comes in and goes, I want him to go on the feeding tube.  It is best for him because the last month when he was weighed, he was 10 lbs 12 oz.  Pediatrician says that he isn't growing as rapidly as he should and this is the most crucial point in development.  So the pediatrician asks us, what the liver team at Mt. Sinai say?  Since my wife was not there last time, I said the following "feeding tube will need to be inserted if he is not thriving."  Then I go, 2 weeks ago he weight 10 lbs 14 oz at the liver clinic.  Pediatrician looks at me and told me to repeat the weight again and how long ago...I repeat "10 lbs 14 oz".  She counts and determines how much of a weight gain he had in 2 weeks and that's at least half a pound.  So the pediatrican goes..."they might give him a chance."  Which is better than what she originally said.  So finally we ended the visit with the pediatrician saying something like this.  Kyle looks remarkable and alert.  His stomach feels soft, she can't feel his liver as the liver at one point was enlarged and he is not jaundiced anymore.  We will report his weight on Tuesday and we'll still keep our fingers crossed...but at least one hurdle passed.

another milestone...Kyle playing in his saucer