Day 8 post transplant

Today is 8 days since Allie’s transplant. The short story is she’s doing great. The longer story – Everyone recovers differently after this surgery. We often see videos online of people taking their first big full breaths with new lungs with huge smiles on their faces or walking laps around the nursing stations grinning ear to ear. That sets up lofty expectations. That does happen for some people but not all. Allie went into this surgery very sick and deconditioned. It’s been a harder road for her and is definitely taking an emotional toll on her. We remind her how truly close to death she was and how far she’s come. I think it’s hard for her to wrap her head around being she was unconscious and heavily medicated for much of that time. I very much believe it’s just a matter of time and she’ll be feeling better emotionally and physically. Taking it day by day. Every couple days another line or drain is removed. Today they took another chest tube out, she’s now down to 4. They’ve removed her arterial line yesterday. Before that they removed her Swan Ganz and various introducers. And, of course she’s been off ECMO since her 3rd day post op and continues to do well in that regard. Yesterday she was on CPAP for 3 hours and a trach collar for 2 hours in the morning, rested in the vent for a while, then trach collar again in the afternoon for 3 hours. She actually walked to the nurses station and back on the trach collar, which is a distance of about 15 feet each way. I wish we had gotten a video but she wasn’t up to having pictures. I was so proud of her!! Being on a trach collar means she is completely breathing on her own with only oxygen added. It’s hard work for her because her muscles are so weak from the long time she was on the vent and compromised by those broken ribs before that, so this is like her breathing while she’s running. But she’s a trooper and doing it. Today she has been on the trach collar for 4 hours straight. They are pushing her hard to go all day if she can. So, as you can see, there’s been much progress in only 8 days time. She really wants to drink something so badly, complaining of thirst, but she must remain nothing at all by mouth until she can solidly tolerate a trach collar all day and then can pass a swallowing evaluation so as to avoid aspirating in those new lungs. Until then, she’s being fed via a tube in her stomach. She gets out of bed to a chair a couple times each day. The plan is for her to walk again today.

We continue to be so thankful for a wonderful team at UPMC Presbyterian – the physicians and APPs, nurses, respiratory therapists, and all the teams it takes to make this work; thankful to the donor family, thankful for our family and friends and neighbors who are supporting us in SO many ways. I personally want to thank my wonderful friends at URMC for donating vacation hours, a big sacrifice on their part that is helping me be with Allie, she very much needs Scott and I to be here. We see the COTA donations growing which is helping relieve my stress level significantly, there are so many costs associated with this process that add up very quickly and there will be lots of bills coming her way not covered by insurance. So please know how important those donations are.
Thank you so much for all of this amazing support. Sending hugs and blowing kisses to everyone.

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