Many of you know Jesse has a rare liver disease called Biliary Atresia. His bile ducts were destroyed and a new one had to be constructed and connected directly to the liver in hopes of getting bile to drain. His gall bladder was removed as it was just a mass in his body. His liver and spleen are still swollen and you can tell by looking at his belly, it's pretty lopsided, but not as big as it was before surgery. The doc doesn't expect the swelling to go down much more (she said it's normal), but is very happy with his progress so far. He had a 2 day scan a few weeks ago and it showed that no bile was draining. So he was put back on a steroid for a month to see if it will help. I believe it is helping a lot! When we were first admitted into the hospital the first week in Nov., his bilirubin count was just about 8. After surgery, it dropped to 3.7 and then went back up to 5 and came back down to 4.7. After being put back on the steroid his level came down to 3 as of last week!! We have another appt. next week and I'm sure we will have more blood work done to see again. All of his other levels have dropped drastically as well! =) So basically, his Kasai procedure is working sometimes and we are trying to get it to work all the time still. Once his levels get closer to 2 he won't even look jaundiced anymore. He has his days when he looks more yellow than others, so hopefully his levels will keep dropping. Only 17% of the kids with this disease will never need a transplant. The doc said we should know in a couple of more months which path he is taking and if he does need a transplant, the goal is to make his liver last until age 2-5. The older he is the better. Some need it a bit earlier where as others could make it into their teens before ever needing one. It really depends on the case and how well the Kasai is working.
He still on all kinds of meds several times a day and we are still supplementing with a special formula 3x a day for extra calories. I can't believe how much it costs!! 1 can costs 35 bucks! I jsut spent 140 dollars on 4 cans yesterday. I am going to have to start buying it online because it's only 28 dollars. I was in shock though. lol. I don't know much about formula and the costs, and I think this is a bit more than the normal suff because I have to order it at a pharmacy. Thankfully he only drinks about 6-10oz a day. He is such a strong little boy and has been through so much in these 3 short months of life. He is probably 13 1/2 pounds by now or closer to 14 pounds. He is gaining wonderfully! And he is starting to sleep better at night now as well. Some nights he only gets up twice and goes right back to sleep.
I just wanted to give a little update. When he is 5 months, we will know better what the future may hold! I will be sure to update when I can again. I try to jump on here a couple of times a week, but I am very busy.
I hope you ladies are doing well. Enjoy those pregnancies and those babies! (((HUGS)))
im feeding the baby so typing with one hand< but wanted to say im so happy he is getting better and stronger every day! I'll be praying for Jesse to not need the transplant and for his continued recovery.
I'm terribly sorry for all that you and the little one are going through! I've never been there, myself, however, I've seen what my aunt has gone through with her son having down syndrom and the affect that it's had on our family... but I know it's not the same as having your own sickly and worrying every day it might be worse the the first, however, it defintally shounds like he's improving so you're in our thoughts and prays... Good luck and I hope the best for you and your little one.
Chantal I am so sorry that Jesse has had to endure so much in his short life! And I am sorry for you, because when our children hurt, we hurt just as much.
I hope and pray that Jesse will be in that 17% that will not need a transplant. Please give Jesse and hug for me and know that your cyber sister Michele, is thinking of you both and praying for you every night.
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