I'll try to make this as informative and simple as possible.
A lot has taken place since the surgery. The surgery, as described by Dr. Lin (who performed the operation) was one of the most difficult CF transplants he has ever seen. Tricia was extremely sick, and her lungs were so badly deteriorated that they literally had to be scraped out of her body.
Tricia has experienced a lot of pain and discomfort. In fact, it's easy to say, at this point, that she was feeling healthier before the surgery (sans the collapsed lung) than she has yet to feel after the surgery. She came out of surgery with 8 tubes (6 "chest tubes" and 2 smaller drainage tubes), an arterial line (left wrist) and central line (neck), and over 100 staples. She was given an epidural for pain meds, and for the first several days had sometimes up to four different IV meds pouring into her body at the same time.
We (our parents and I) were able to see Tricia just a few hours after the surgery ended while she was still sedated. She was awake shortly after, and when I went to see her a second time that afternoon, she was sitting up and alert.
Tricia dealt with the short term memory loss for about the first 5-7 days...each day it got a little better. The first day she would literally forget everything within about 1-2 minutes, by the afternoon of day 4 she began remembering a things from that morning, and by day 7 she was able to remember most of day 6. Anesthesia and other drugs affect everyone differently...some can remember everything except outside of sedation, while others, like Tricia, may never remember anything of the several days surrounding the surgery. She is still having a hard time remembering anything from the day leading up to the surgery.
Because of the short-term memory loss, Tricia constantly asked the same questions and made the same statements over and over the first few days. Her chest felt very tight. A "rumbling" feeling from a leak around one of the chest tubes felt like the secretions that she was used to in her old lungs, and she constantly asked to be suctioned, and we constantly had to explain that she didn't need to be. The incisions around the chest tubes and the incision that stretches from under one arm across her chest to under the other arm continue to be very painful.
On day 2 she had the 2 hard plastic chest tubes removed (the others are flexible rubber), her G tube replaced by a G/J tube, and the pic line placed. On day 7 she had the epidural removed.
Her breathing was and still is very difficult. The chest tubes take up some space in her chest cavity, and the many, still-healing incisions make it hard to take a deep breath without being in pain. She has no sensation in her new lungs, yet, and, of course, everything is cut up and rearranged and replaced, so it's very hard for her to really tell how deeply and fully she is able to breathe, which tends to create some anxiety. Her O2 and CO2 sats have been good, but not great.
As was explained to us before the transplant, because Tricia was on a vent for so long and transplanted on a vent, her recovery time could be expected to be longer. Normally, they aim to have most post-surgery TX patients off the vent in 48 hours and out of ICU within 4-5 days. Duke has performed around 700 TX surgeries, and only 2% (about 14 people) have been gone into surgery on a vent like Tricia.
She finally began getting some substantial sleep on day 6, and it showed on day 7 as it was the first day that Tricia really began to act more like herself. The first week, she was almost completely focused on herself (understandably so, as your body and mind force you to be self-centered when you're in a sever medical condition). Day 7, however, she began to become more talkative, smile and laugh more and show more interest in what was going on outside of her ICU room, which was a huge turning point for her and for me.
The first week, especially, was extremely difficult for me. I won't say much, as we love Duke and are always thankful for the incredible care we receive, but, added to the emotional and mental stress of the surgery and recovery as well as the inability to be with Tricia 24/7 (which is stressful for both of us) were some other issues that were finally resolved after several days.
I did take advantage (as did Agnes) of the opportunity to sleep in the hotel beds for several nights in a row, and once the issues were resolved, and then more one Tricia began to return to her usual self, and then especially when she was moved from the ICU, we were all feeling much more relaxed and secure. As you can imagine, the past few weeks have also been incredibly difficult for our families.
Tricia has been walking around 2000 feet the past several days, and, for the first time since I walked her into the hospital in December, I was able to walk with her yesterday by myself without any nurses or RTs tagging along. She is becoming more mobile as she is now free of most of the chest tubes and is spending less time hooked to IV meds. We were able to visit Gwyneth together again yesterday, and hope to go again later today. Although her recovery has been slow, and she is still having a hard time breathing and is still receiving lots of pain meds, her medical team remains very optimistic that she'll be discharged sooner rather than later, which is keeping us hopeful in the difficult moments.
That's all for now. Please, understand that this is just a very simple, very surface picture of what the past few weeks have been like for us. There is so much more that has and is going on that I cannot share with you. Hopefully, this post gives you an honest but censored idea of what is going on. I'll share more soon about what to expect in the next few weeks and months. We're just incredibly thankful to God for getting us this far, and we're praying that He'll complete this part of our journey with a trip home soon.
PS. I'm having a hard time uploading pics from Tricia's room, but I'll try to get some up ASAP.