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UPDATE on Jesse's surgery and progress
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!!
GO get some sleep girlll...lol..you need it,,,,glad to hear things are doing ok and that you are finally home!! How nice..your strong enough to this this...no matter how long or short your journey is!! Hang in there! ( hugs for you and the lil guy)
Rosa
Rosa
Sorry I didn't post sooner. But we are home now!!! Got home last night (friday) =) His levels went back down so it meant he didn't have an infection and they let us go. There is nothing more they can do there for us since he wasn't hooked up to anything. I go back on tuesday for a follow up appt and lab work to make sure his levels either stay stable or come down. I'm so thankful. This is just the beginning of this journey, and I hope Jesse gets healthier over the years and never needs a transplant. Ok, going back to sleep!!! Just wanted to update.
Boy Chantal, what an emotional ride... Im just catching up on my friends here ;-) and saw this and wanted to wish you well. Im so sorry for what your going through, and im hoping your feeling better as well as your little guy.. What a dear darling he is. Going to be anxiously waiting results from this morning, and sending prayers of strength for all of you. Hugs Chantal, from the other granny around here ;-)
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.
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.
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. =(
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!
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.
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?
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?
You are so strong and i will continue to keep lil jesse in my prayers!! He sounds like hes being such a trooper..god love him! I hope everything stays great....its good to hear you are all doing well...i hope you feel better soon too!! :) Keep us posted hun!
Thanks everyone! =) Today his bilirubin count went up a bit, and we are hoping for good bowel movements that indicate proper bile flow. He may have a slight infection (which can happen with a procedure like this) and may need to go on another antibiotic to control that and some meds to help with bile flow. PLease continue to pray. The doc was saying we could possibly go home tomorrow, but may not be until sat. or next week. It's a wait and see at this point. I just want my healthy baby boy back in my arms cuddling next to me in bed. I wish he didn't have to go through ANY of this. It's tough, but I am trying to be as strong as possible for my little guy.
Chantal it really makes me happy to hear that Jesse's recovery is coming a long so well. You take care of yourself and I will continue to pray for his well being and yours.
Chantal, so good to hear from you!! (((HUGS))) What a strong little guy you have!! So happy to hear that his surgery went so well and that you guys could be home so soon!! I will continue to pray for a speedy and complete recovery! After all the little guy has been through and he's still flirting with the nurses!? Adorable!! Your gonna have your hands full with him when he gets older LOL!
its so great to hear everything is going so well, your a great mom Chantal! hang in there, u and ur baby boy will be home soon! i was sick and in the childrens hospital all the time as a child and my mom always stayed with me no matter what and i cant even tell u how much i love her for that....it means a lot to jesse that ur there with him even if he cant say it! hes such a strong little monkey!
He really is!! I've been sick the past couple of days so I haven't held him or spent much time with him for fear of getting him sick. Plus, since monday no one under 16 is allowed in the hospital to visit because of the flu....their ER is constantly packed and a few times i had to go through there until someone told me of another way to go...thankfully i didn't get the flu though! freaked me out. But Jesse is so strong and such a happy, smily boy. I'm so proud of my lil guy and can't wait to get him back home. The nurses here spoil him so much!! lol They are always holding him...bringing him to the nurses station to hang out...he's such a flirt. ;) I'm just so thankful to be at a wonderful children's hospital.
Great to hear Jesse doing well! That is such a relief, he is a strong boy!!
What a relief!!! I am so glad to hear that he has made a super speedy recovery!!! What strong little fella!!!
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