picc line out...

Yay!! After about almost a month and a few rounds of antibiotics, his picc line was finally taken out by the home nurse this afternoon. His lab results were good enough that the liver team and ID team felt it was time for the line to come out so it would not cause anymore infection. It's such a big relief for all of us and if Kyle can talk he'll probably say "FINALLY! FREEDOM!". He can get a real bath too! YAY! So far the little man is doing well with the exception of a low grade fever of  like 99-100 because of his shots-- hopefully it goes away soon. Even with a little fever - he's laughing like he normall does, eating more, pooping and smiling!

We want to say Thank you all for those who've been there since day one for all your support and prayers! We are truly lucky to have you all in our lives!


YAY! My picc line is out!




Kyle with his sister in the morning



the first post ...

This seems to be the best way to update our family and friends on Kyle! And also our way to look back on how much he's improving.

The short story of how it all began - Kyle was diagnosed with biliary atresia at 2 months (8 weeks) - and has his kasai at 65 days old (1/11/11) - he was doing great up until 8 weeks post kasai! he was 4 months old (exactly!) when he was first admitted with a high fever and they suggested and treated that as a case of cholangitis. A week after that stay, he spiked up a fever along with rashes - we went back in for the 2nd time - that time was the worst. He was in shock pretty much - so doctors called it "the real thing" that time around - his blood culture came back with gram-negative and it was later determined to be e.coli. He was treated for a week at the hospital and went home with a PICC line to be treated on IV. Then literally the next day after his follow up appointment that day - he spiked a fever and was admitted for the 3rd time. Again it was e. coli! We stayed for another week - and went home to get treated again on the PICC line.

Today is the first day off his antibiotics - hopefully no more bacteria. It was also his followup at Mt. Sinai and his over due well visit.  His current weight at both doctors is 10lbs 12ozs - extremely underweight - but my little superhero has been thru a lot. He is however growing in length- 25 inches... That's an inch more a week ago.
We are waiting for his blood results to come back and if the numbers are good they'll take the Picc line out. Hopefully sooner than later since it can be a resource for bacteria.

His liver ped even said if his numbers are approving at his next follow up and weight goes up- he may be able to go back on his regular formula! Yay!!! Crossing fingers that it will happen as the current formula is expensive! They encouraged baby food as well- however his ped said not yet since he wouldn't get as much calories from it. She told us to do all types of grain first. So onto oatmeal next week!!!

My superhero is such a happy baby! He didn't cry when he got 3 tubes of blood drawn but he screamed like crazy when he received his shots! Haha! Go figure that one out! Hopefully  he's on the road to recovery! No more fevers! No more infections!!!! That's all I'm asking for!

**update on his blood results - NP said doctor LOVES his results! his bilirubin direct is 1.7! wohoo! and i believe total is 2.7


Kyle on his way to his follow up!