As unbelievable as it sounds, Kelsey might be coming home as early as Monday. We are excited and very nervous at the same time, because she will still be on oxygen and her feeding tube. We will have to learn how to do both at home. Right now she's in a wait and see mode, and all they are doing for her is feeding and watching her oxygen level (which has been the same for some time). So, they said we could do that at home just as well. So, Andy and I will be at the hospital trying to assume full care of her over the weekend in the hospital so we can bring her home. This isn't a for sure thing yet, one of the doctors is still hesitant because of the chemo and TMD and Kelsey's still on mixed oxygen and they have to wing her to room air oxygen. They did move her feeding tube to her stomach yesterday and she tollerated it just fine. Now we are going to see if her can handle getting off continuous feeds next and slowly work our way to feeding by mouth.
This is very exciting but at the same time very scary, since we won't have any one at home to help if it don't know what to do with her. Her ascites is not getting worst, meaning she has stopped getting bigger, but it's not going down either. Her liver counts are still trending up just a little but not enough that the doctors are worried. We hope the fact that Kelsey's getting feed more fluids than ever and is still not getting bigger is a good sign but nothings shows that her liver is getting better for sure, yet.
Continue to pray Kelsey's liver will heal and pray Kelsey and Andy and I will be ready for our little girl to come home. I've prayed Kelsey will come home so much that now that's it here I don't know how to feel. I wanted her to come home completely healed, so this is weird. God works in mystious ways. He did answer my prayers just in His own way. God IS good and trust this is all part of His plan.
The heart surgery is still needed when her liver counts are better and the ascites goes down some. They want her to be in the best condition possible to have the best come from such a difficult surgery.
Thanks for all your prayers to get our baby girl home. I hope this will work, we will know more Saturday and Sunday. We keep you posted.
Patti
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You don't know me but I follow your blog & have it attached to my son's as one I follow. I love reading your post.
ReplyDeleteI've been praying for Kelsey for months. I know how you feel about bringing Kelsey home it is scary but you are glad and excited. I remember I prayed for my son to come home and then we go into the unit one day and they say, "he's going into pre-discharge and that means if all goes well tonight he goes home tomorrow. Believe me as excited as I was to have that happen I was ever bit as scared. My son didn't require a feeding tube or oxygen and what we had to watch was internal, his shunt for hydrocpehalus, the "severe" heart defect. They set us up for home nurse for 3 days and then when we back to see our Peditrician. You will do great, it is scary but you will get through it.
Wow - it's amazing how things change so quickly from moment to the next. It's good to hear that Kelsey's stable though! Have you spoken to doctors about some home health care support once Kelsey gets home? Maybe it would make the adjustment easier on you all. Let me know what you guys need. I'm more than happy to help in any way I can.
ReplyDeleteWow! This is so encouraging. Like you said God answered a prayer in "His" way... I can't imagine what you are feeling but do understand the anxiety. Hopefully your family will get to feel some sort of normalcy with everyone being in one place.
ReplyDeleteWe continue to pray. Please keep the updates coming when you are up to it... :0)
Praying for you this weekend as you prepare for what might happen Monday. God is going before you in this situation and will see you through it. It will be exciting to hear about life at home with Kelsey.
ReplyDeleteLove,
Jen Bell Riley