UPDATE on Jesse's surgery and progress

[chantal21]

As some of you know, Jesse was diagnosed with Biliary Atresia over a week ago. He had the Kasai procedure done in hopes of having the bile flow correctly.  His gall bladder was just a mass and was removed. He had some cirrohosis of the liver, but not much, thankfully!!! The doc is VERY happy with Jesse's progress and healing and said we may be going home in just a few days....A FEW DAYS!!?!? I am so happy!! He is not as yellow anymore, and his levels drop everyday which is wonderful! =) He is a strong little boy and I am so thankful it has gone really well so far. The doc thinks he may not need a liver transplant in his lifetime, but you can never be certain. I sure hope this procedure has worked for him. He is now drinking breastmilk out of a bottle, I only nursed him once the other night for 5 min. and he is keeping it down. He was so happy to just have something going down his throat. He drinks about 3oz every 2-3 hours. yay!! Once we go home I will have to pump at least once a day so we can add MCT oil to his bottle to help his body absorb the nutrients and break it down better. Once he gets a little older, he will probably have to be on a strict diet to help his liver function better.  =) He is on TPN (nutrition) and tonight will be his last bag and he will no longer have ANY tubes connected to him. He had so many after surgery and it was scary, but now it's much better. He is doing so well. I just wanted to let everyone know and thanks for the prayers and thoughts. Please continue as we still have a long road ahead of us!!

[Grandmatobe]

Did you get any new test results today on his bili count?  I sure hope they are dropping again.  I can't believe he is eating 8 oz at a time, wow - - - that is wonderful.  Hang in there Chantel - - you will all be together as a family again soon.

[smjmekg]

You'll see him soon enough. They sure do grow up fast...Elijah's been putting together three words since he was about 13 months old. He learns more every week. It's amazing. Hold on to Jesse's infancy...before you know it he'll be just Jeramiah's age.

[chantal21]

Thanks so much! I really appreciate it!! I know...where has the time gone? He is getting so big. Usually kids with this disease are not thriving and actually lose weight. So I am very thankful he is able to absorb the nutrients from my milk, just hoping that bile flows correctly soon and doesn't damage his liver anymore. Wow, he had surgery exactly a week ago. that kinda flew by!! I just can't wait to be back home. I miss my other son terribly. My BIL took a video of him today and it made me cry, that's how much I miss him. He's doing so many new things too and learning new words and able to use them together.  Pretty soon he will be talking in sentences!! Ah I miss him. =(

[smjmekg]

I'm glad he's growing and gaining weight. That's gotta be a good sign. Wow 8 oz...that's a lot, but it's good. I can't believe he's already 10 weeks, it seems like just yesterday you were saying you had him. Dang time has been flying by lately! I hope his numbers start going back down. I'll keep checking in to see if you post anything new, and I'll keep all of you in my thoughts and prayers!

[chantal21]

The reason his bili could be going up, is the bile is not flowing properly and getting backed up still. We have to wait and see what his levels are in the morning. I will keep you posted. He is 11 pounds 4oz now!! So he is growing. He eats 8oz every 3 hours now!! Such a piggy. He will be 10 weeks on sunday! So he is thriving, just trying to figure out why the numbers creeped back up. But he is on a med to help with that and hopefully it will help. I am going to speak to the doc tomorrow and see what he thinks.

[Grandmatobe]

Jesse does sound like a trooper and continues to fight hard.  I'm sure he wants to go home and snuggle his mommy too.....

Do the doctors have any idea what would cause his bili count to go up?  Would it be from the infection or are they separate issues?