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UPDATE on Jesse and the biliary atresia....
by chantal21, Nov 06, 2009 10:08PM
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, but we won't know until we see if the procedure has worked. Poor baby!! We are staying right across the street for the night. It's like a big house/hotel for the families of kids who are at this hospital. Everyone has been so gracious to us during this trying time. Your life can be turned around in a moment. I still feel like I am dreaming. My poor sweet baby. I can't nurse him, I can't hold him, I am so sad. I talk to him and caress his head and keep telling him we will go home very very soon to snuggle in our bed all day and night when we are done here. He's still coming out of the anesthesia, so I decided to go to the room to sleep with hubby so I can actually get a good night's sleep since there is nothing I can do for him at the moment. The nurses there are taking good care of him. He doesn't even need the breathing tube like they thought he would. He did lose some blood during surgery and needed a small transfusion, but other than that, he looks great! and is very stable. IF one day he needs a liver, they are hoping it's when he is closer to the age of 2 or even older if it can wait, we are hoping someone in the family can donate a piece of their liver to give to him as they say the rejection process is much less if through a family member. We shall see! I pray he is okay with this. About 2 in every 10 kids who have had this procedure, will need a transplant. Let's hope Jesse is on that good side!! He is strong!
Biliary Atresia is VERY rare. about 1 in 20,000 will have it. Dr. Dunn (the dr. who worked on him) has done a total of 100 Kasai procedures in the last 20 years. He is a well known liver/transplant doctor and Jesse couldn't be in better human hands. But ultimately, it's in God's hands. Jesse is the 10th patient with this disease in the last 2 years. They do not know what causes this, or why it happens. His gall bladder did not develop for some reason and they say it's nothing I could have done and even the pregnancy with pre-term labor had nothing to do with it. It was just a mass and was removed as well the duct work. (for lack of better words. ;) The docs are being very optimistic at this point from what they have seen so far. James and I are learning to trust in God more and more every minute of every day. He is merciful.
We are thankful for all the people at this hospital and their services and support! Thank you all for the prayers and please continue! We have a long road ahead of us. This is just the beginning. But I am ready if it means I will have my healthy, happy, smily, cooing baby back in my arms and safe at home.
~Chantal~
Biliary Atresia is VERY rare. about 1 in 20,000 will have it. Dr. Dunn (the dr. who worked on him) has done a total of 100 Kasai procedures in the last 20 years. He is a well known liver/transplant doctor and Jesse couldn't be in better human hands. But ultimately, it's in God's hands. Jesse is the 10th patient with this disease in the last 2 years. They do not know what causes this, or why it happens. His gall bladder did not develop for some reason and they say it's nothing I could have done and even the pregnancy with pre-term labor had nothing to do with it. It was just a mass and was removed as well the duct work. (for lack of better words. ;) The docs are being very optimistic at this point from what they have seen so far. James and I are learning to trust in God more and more every minute of every day. He is merciful.
We are thankful for all the people at this hospital and their services and support! Thank you all for the prayers and please continue! We have a long road ahead of us. This is just the beginning. But I am ready if it means I will have my healthy, happy, smily, cooing baby back in my arms and safe at home.
~Chantal~
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*HUGS*
Hugs!!
Kelly
Take care.
xoxo Latrice&Trinity