Elizabeth continues to do well, considering she needs new lungs. She is still on alot sedation but does wake up alot. Her pentabarb dose will decrease again tomorrow and if she continues to do well it gets decreased every 4 days. If/when she is able to wean completely off the pentabarb, then we will try to get rid of the clonodine patch and fentanyl drip. She is still tolerating her new formula and it is being increased every 4 days, as she tolerates it. Right now she gets 15 per hour, and her goal is 40 so we will be working on that for a while :)
The biggest news of the day is that she has grown in length! So her status on the transplant list was changed to reflect this new length, we were told that it would increase her donor pool. Since she is "bigger" she could get "bigger" lungs. We will see if it makes a difference.
We learned the transplant team here will be closing the transplant program for about 5 days at the end of next week sometime. There is a transplant convention, and all the doctors/surgeons will be attending. So they will not accept offers for lungs during this time. Kinda disappointing to think that if Elizabeth doesn't get lungs before then, that she could miss an offer, but on the upside I guess we will never know about it. We don't know the exact dates yet, but I will post when we know.
I started thinking about what we were doing this time last year. Elizabeth was in PICU back home after her lung biopsy/PDA ligation. She was very unstable and unable to wean off the ventilator. She was paralyzed, and we were so worried about her. One year ago today were given her official diagnosis for her lung disease, and were actually grateful! Because her disease appeared to be one of the "better ones". One that she could possibly out grow and have a normal life. Crazy to think about how things have changed in a year. How little we have actually been home. How many people we have met. We have been at 5 different hospitals in 3 different states. We have encountered too many medical people to mention. We have lived in hospitals, ronald mcdonald houses, apartments, had 3 different plane rides, numerous ambulance rides. In-home health care, and lots of medical equipment. Matt and I have learned more about the medical field and respiratory issues than either of us ever wanted to know. Even though we would be grateful to never had to experience this, we are also lucky that we have. Experiencing all of this just means that Elizabeth is still here. We will continue to do whatever we have to provide her with the best possible care.
Elizabeth is the most amazing person I have ever met. Because of her I have felt heartache and fear I have never thought possible. But I have also felt strength and love I never thought possible as well. We are so lucky to have been chosen to be her parents, no matter where this journey takes us, we are the lucky ones.
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