Taylor continues to make forward progress, ever so slowly. Today she was taken off the pacemaker (then put back on) to keep her heart rate steady. The purpose is just to take the pressure off the heart as it heals and she isn't quite ready to maintain a steady heart rate around 120 all on her own just yet. There is a possiblity she will need a pacemaker for a while which certainly isn't a big deal compared with everything else she has had going on! :)
The doctors also turned both the rate and the pressure down on the ventilator in preparation to take her off (possibly overnight) tomorrow. Her airways look good according to the CT scan results. Jason and I actually got to look at the images today along with her pulmonologist and he was able to explain to us her issue. Essentially her airways to the lungs were being pinched off by her enlarged pulmonary artery prior the surgery in February. The right side has recovered very well and is open and looking good, while the left is still a bit "squished" as the doctor told us today. However, this does not seem to be impeding air flow and is still an improvement from February. It will just take time to fully outgrow.
The nurses at the Fairfax PICU continue to be amazing and take lots of time to answer all of our questions about medication, etc. We learned today that Taylor will move through a protocol of being weaned off of the sedation and painkiller meds once she is off the ventilator. She has been on Fentanol and Versed, both very strong drugs that require weaning so that she doesn't experience withdrawl. This will involve methadone and likely valium. Wow!!!! However, as it was explained to us, babies don't have the psychological addiction to the meds so it is just a matter of stepping them down over several days to help the body flush them out. Taylor wasn't on all of these heavy meds last time, so this part is new to us.
Tomorrow (Wednesday) we plan to be at the hospital for rounds - sometime around 10 AM. We actually are able to listen in as the doctors share updates. The surgeon and cardiologists round at 7:30, so we will miss them, but we get all the updates when we come in from the nurses. If Taylor is off the vent and awake one of us will likely stay at least into the evening if not overnight.
Cameron has another swim meet tomorrow night and is swimming freestyle and butterfly. I am amazed at his confidence! Unfortunately, butterfly is the last stroke of the meet so it will be a long event. We are very proud that he wants to give it a try! Em is going to stay with a friend tomorrow evening so that one of us can be with Cam and the other with Taylor.
We will keep you posted on visiting. Today Christy Ryder came to visit with her daughter Caroline and Jason and I spent some time with them in the family waiting room while Taylor slept. Once she is awake her visitors will be limited but we would definitely love to see you! Just give one of us a call or shoot us an email and we will let you know a good time.
Thank you for continuing to lift Taylor up in prayer. God is really working in our lives and especially hers!
More tomorrow...
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Thank you, thank you for taking the time to share your journey. As friends, parents and caring believers, we stand in awe of the medical miracle and caring shown by the staff, the focus and strength of the two of you, and the wisdom of holding on to time and attention for the rest of your family. Prsyaes are so imporant and yet we long for a chance to do more... we rely on Alisha to let us know how and when you can be more supportive in a specific way. Again thanks for the posting and the pictures.
ReplyDeleteRon and Cappie Morgan