UPDATE on Jesse and the biliary atresia....

[chantal21]

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~

[chantal21]

thank you! I am trying to stay positive. I am just hoping his liver biospy comes back okay!! The waiting is what is hard.

[Latrice414]

Sending you and Jesse big hugssss and much prayer, im glad he is stable right now.  Take care Chantal and get plenty of rest

xoxo Latrice&Trinity

[chit80]

Glad to hear Jesse is doing well. May God bless him!

[Gina209]

Oh Chantal, I had no idea! I hardly get on here anymore so I just read about Jesse :( The poor lil guy...I am so happy to hear the procedure went well and I'm praying for his fast and healthy recovery! Poor lil baby. And you and hubby too...praying for you all. Your doing such a great job Mommy! Give my love to the little one xoxo

[mum2beagain]

You and your family are in my thoughts. I am glad everything went well. Take care.

[niki_beth]

I am so happy the procedure went well! I am praying for a successful and quick recovery for Jesse! I am keeping you and your family in my thoughts and prayers Chantal!! Thank you so much for keeping us updated!

[spade22]

Poor, poor, baby.  Your news sounds very positive though which is awesome.  It was great to hear your update Chantal (maybe I can sleep tonight ;-)  )

Take care.

[Quinns momma]

So happy to see that the surgery went well. I jumped onto Facebook this morning and his pics are adorable!  

Hugs!!
Kelly

[UmYusra]

glad things worked out fine for lil Jesses and hope he will get even better and better soon.


*HUGS*

[chantal21]

Thank you all so much!! It means a lot! I've been on this site for a long time, and you ladies have been nothing but supportive!  I appreciate everything. I am getting ready to go check on my little man soon. I actually slept pretty good and have peace about the situation. No phone calls from the nurses means he is doing well. =) They are starting him on some nutrients today through an IV...they said he was one of the more "well" babies on the floor. How wonderful. I am so thankful. He is a little fighter and I miss him like crazy. Everytime I think of him or see some pictures, I start bawling my eyes out. Poor little guy is going to be going through a lot the next year of his life and honestly for the rest of his life. But he is in good hands.  I will keep the updates coming as I hear things. My hubby's uncle works on the floor and in the unit that Jesse is in...what a blessing!! =)

[tiredbuthappy]

so relieved for you and your family. hope you continue to hear good news.

[therese101]

im so glad to hear he came through the surgery well. its good that he has a great doctor as well! keep the updates coming when you get a chance, and know that we are praying for him and your family!

[LosingMyMindInGA]

I haven't been on in awhile so I'm just now finding out there was a problem with Jesse.  I'm so glad things are looking up and he did well with the surgery.  I pray he continues to progress and get better and that the procedure will do what it needs to in order to keep him from having to have a transplant.

[martikadragoon]

YAY I'm so glad things went well!!!

[wanttobeamumagain]

Im so happy everything went well. Every time i got up to feed Zac last night i was thinking of you all. I wish i could help in some way. Please give jesse a big kiss from me!! Keep us updated. Kelly x x

[Grandmatobe]

Keeping your entire family in my thoughts.  I am glad the procedure went well and he is on the way to mending.  Many hugs to you all.

[jenkaye21]

Thank God things went well!  What a beautiful little boy, I will continue praying for him and your family.  ((hugs))

[blueeyedtabbycat]

I looked it up and I have to say im so happy he has got a great doctor! He is in good hands! God's too:-) He looks great for just being in surgery!! I cant begin to tell you how happy I am that he made it through ok!! I will continue to pray that he heals and doesnt need a transplant. Love you girl! Give that cutie with all that hair a big kiss from me!

[JillyHemp316]

I am soo happy to hear that things went well. You and your family will still be in my prayers.