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FROM CHANTAL
by mamaofonetrying42, Nov 05, 2009 02:58PM
As most of us knew Jesse had been in the hospital for a few days now. They discover that he WILL need surgery tomorrow, so if everyone could Please pray for jesse that would be great and prob. mean the world to Chantal.
Here is what she wrote me today:
The condition is called biliary atresia. They still don't know if that's what he has for sure, but if he does, the surgery could actually last up to 5 hours...not 2 hours. =( And if they do the full surgery, he will be in the PICU (icu for kids) for 2 days at least. I feel like I am dreaming. I just want to wake up and have my normal healthy baby back. I'm glad they let us go home last night! What a blessing to get good sleep in our own bed and snuggle time with my baby before tomorrow. We have to be at the hospital by 8:15. The last nursing session before surgery will be by 4:45am and between 4:45 and 6:45 he can only have pedialyte or water if he is hungry. Then IV fluids in the hospital when we arrive. I keep praying and hoping when they go in that it's just a simple blockage that they can clear it and he can recover from quickly. I can always hope! But only God knows. Basically, if he has this disease, there is a chance he may need a liver transplant in the next 2 years (or sooner) or sometime in his life. I will be going to this hospital once a week for a year for testing and monitoring. Then every 2 weeks, every month and every 6 months until he is 18. I sometimes hope it's not biliary atresia, BUT at the same time we need a diagnosis and if it's not that, then the poor baby needs more testing and more poking done. I am just hoping for the best. The ONLY symptoms he has are, greenish/whitish stools, and yellow skin. Other than that, he is normal! He is gaining and growing properly according to their charts, so that kinda shocked them. He is strong, I know he is. But if the procedure to correct it fails, he will need a liver transplant without question. I'm an emotional wreck...please just pray for us. You can even let the ladies know everything I told you here. I'm so thankful for all the support and prayers. I will go now and try to keep everyone updated on everything when I can and when I hear something.
~chantal~
Here is what she wrote me today:
The condition is called biliary atresia. They still don't know if that's what he has for sure, but if he does, the surgery could actually last up to 5 hours...not 2 hours. =( And if they do the full surgery, he will be in the PICU (icu for kids) for 2 days at least. I feel like I am dreaming. I just want to wake up and have my normal healthy baby back. I'm glad they let us go home last night! What a blessing to get good sleep in our own bed and snuggle time with my baby before tomorrow. We have to be at the hospital by 8:15. The last nursing session before surgery will be by 4:45am and between 4:45 and 6:45 he can only have pedialyte or water if he is hungry. Then IV fluids in the hospital when we arrive. I keep praying and hoping when they go in that it's just a simple blockage that they can clear it and he can recover from quickly. I can always hope! But only God knows. Basically, if he has this disease, there is a chance he may need a liver transplant in the next 2 years (or sooner) or sometime in his life. I will be going to this hospital once a week for a year for testing and monitoring. Then every 2 weeks, every month and every 6 months until he is 18. I sometimes hope it's not biliary atresia, BUT at the same time we need a diagnosis and if it's not that, then the poor baby needs more testing and more poking done. I am just hoping for the best. The ONLY symptoms he has are, greenish/whitish stools, and yellow skin. Other than that, he is normal! He is gaining and growing properly according to their charts, so that kinda shocked them. He is strong, I know he is. But if the procedure to correct it fails, he will need a liver transplant without question. I'm an emotional wreck...please just pray for us. You can even let the ladies know everything I told you here. I'm so thankful for all the support and prayers. I will go now and try to keep everyone updated on everything when I can and when I hear something.
~chantal~
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Kelly
Let me know if you can tomorrow, how things went.
Any updates?
J
Jesse is out of surgery, had to do the full procedure. He has Biliary Astresia, and had the Kasai procedure done. He's stable, just waiting until he can get out of the PICU and into a normal room. We should know in a week or so if the procedure worked for him. There is a chance he may need a liver transplant one day.