Thought I'd share the little bit of *new* information I have!
Alexis had her follow up with the surgeon yesterday.. We discussed the next step and I explained to him that I would love to have both procedures done prior to March. He took a look at Alexis and seen how well she was doing and said that could 100% be done. He said if all went well, he would be comfortable completing her j-pouch by the end of the year! I wish we could finish the process with just one more procedure, but I know the 3 step will ensure that everything is healed and working correctly before we take the big step into connecting everything. I have no plans on rushing her, and will encourage her to let me know when SHE is ready. The surgeon said we could be back in as early as mid September. Not sure if I am 100% comfortable with going in that soon since Alexis will be starting Kindergarten at the end of this month.
I am sure there will be people who do not agree with how quickly we are moving forward, but this is what Alexis wants and what her Dad and I think is best for her. We want her to feel normal (both inside and out) as quickly as possible. She has expressed to us on MANY occasions that she is happy that she doesn't feel sick everyday, but she can't wait to get rid of her "big red spot".
So, keep the *encouraging* words coming, we could sure use them!
Hi Tara,
ReplyDeleteThank you for blogging your family's experience. I'm so glad that Alexis is well! What a nightmare this disease is. I too have a daughter (now 6 dx at 3) who is facing surgery, possibly very soon. I am so scared. If you have the time and energy (obviously you have your hands full) I would love to chat with you. My email address is schopra3@fastmail.fm
Congrats on your pregnancy! I wish your family healing and peace.
As for your decision to move forward with the jpouch, this is such a difficult decision and there is no right or wrong. I've heard of many children who go through the three surgeries quickly and do very very well. If the surgeon feels confident, and it's what's right for your family then no one should have anything to say about that. No one else has walked in your shoes.
ReplyDeleteI advise checking out jpouch.org - you can post questions and concerns there and there are parents of children who have been through this who are happy to help.
Hi! My young daughter had the three step surgery about a year ago. We waited three months in between each suregery, which the surgeon said that typically he only waits two months but since she had been in the intensive care unit for a while before the first step he wanted to make sure she was nice and strong. I think your time frame is right on track. She had some ups and downs, but overall did wonderful. We wouldn't have changed a thing!
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