We made some progress today. After four days of basically letting Alivia's body take it easy and refuel, the doctors took a closer look at her heart via a cardiac MRI today. This was a semi-risky procedure since they had to sedate her, and babies with weak hearts don't always tolerate sedation well. They warned us she may need help breathing if her heart didn't like the sedation, but fortunately she tolerated the testing procedure very well and came back to us quickly.
The MRI ruled out a viral infection, which I think is both good and bad. She has no scar tissue on her heart, which is a good thing. But she now falls into this group of patients who likely won't have a specific reason to pinpoint for their heart failure. Which means we move on to the next phase.
That phrase involves weaning her off the IV meds that are helping her heart and transitioning her to an oral med. If she tolerates that, we'll move off the ICU in a day or two, stay on the step-down floor for a couple days of monitoring, and then we'll come home with our baby and a slew of meds to help manage her heart issue. Many kids tolerate this very well, and I'm feeling confident (most of the time) that she'll fall into this category. There's even a slight chance her heart could improve some function...but they key word there is slight.
If this med transition doesn't work, we stay put and start discussing transplantation. We've known from day one this is a possibility for her, but we aren't going to get too worked up over that until we try this next phase out first. It's just too much to digest to look too far down the road. So our energies now will be focused on getting Alivia on oral medication and hoping, hoping, hoping she does well. It's hard not to believe she won't succeed at this. She's proven to be a really tough cookie.
Definitely praying the transition to oral meds go good! Keep the faith! What a relief it has to be to just be over this hurdle of the testing! Stay strong and we will keep praying!
ReplyDeleteTara Knowles
I will pray for your beautiful little girl. "Peace does not mean to be in a place where there is no noise or pain...but to be in the midst of those things and still be calm in your heart" Sending healing prayers from Montana:)
ReplyDeleteI popped on here from Lauren's blog. Alivia is so adorable and what a tough cookie with that BIG smile on her face. :) I will keep you guys in my prayers. Hugs and love from MI.
ReplyDeleteI think that's a good idea to just stay focused on the next steps. Worrying won't help. We are all praying for Ali and You and Andrew. Hoping for more good news today.
ReplyDeleteLauren
Continued P&PT that Alivia transitions to the oral meds successfully. She's a tough girl - I have every confidence that she'll be successful in this transition. Thanks for the updates, thinking of you, Andrew, Tyler and Alivia often!!
ReplyDeleteWe are keeping you guys in our prayers everyday. Her friends miss Alivia very much and we can't wait until she's well and can come see us. Thanks for keeping us updated - good to know what's happening with that beautiful little girl. We love her and miss her! MISS AMANDA
ReplyDeleteLots of P&PT continuing. I pray that Alivia does not need a transplant, and that the oral meds do well for her. I think everyone following Alivia's story will feel a sigh of relief once you guys are able to be home where you all belong! Thank you so much for keeping the updates coming even though you guys are going through so much right now.
ReplyDelete~Sherry G (another GS momma)
keeping you and your sweet baby girl in my prayers. Glad she tolerated the MRI well and will pray that the transition to oral meds goes smoothly for you.
ReplyDeleteSusan Irene