Transplant: Day 8

The last week has been a bit of a blur as Maggie continues to recover from her transplant surgery. It's hard to keep track of exactly what has happened and when. We have been taking it in turns to spend days and nights with Maggie in her hospital room, trying to get rest and sleep where we can. Ed and Stevie, Maggie's father and brother, have both returned to Chicago. Kerry, Maggie's mother, and I have been alternating nights in and out of the hospital. It's tiring work, but rewarding to watch as Maggie becomes more and more like the Maggie we know and love.

It's hard to describe just how busy and action-packed the days have been here at the hospital, although it seems like things might finally be calming down. Sleep has been a rare commodity until recently, even at night there is a constant stream of things to do, with nurses coming in and out. As I write this by Maggie's bedside, she is taking a nap, and it's amazing to watch her sleep compared to before. Her mouth is wide open as if she is catching flies, and she is taking slow, deep breaths rather than the shallow and rapid breathing of before. Her breathing is also silent. For years, every breath she took came with crackles and wheezes, similar to the sound of rice krispies covered in milk. But now it is totally silent. She was curious to listen to her new lungs, so the other day the nurse gave her a stethoscope. She asked inquisitively, "What is that whooshing sound?" The nurse replied, "Maggie, that is the sound of air rushing into your lungs, that's what normal lungs should sound like!" There were no crackles, no wheezes or other strange noises. Even at birth, her lungs were not completely clear, so this was truly a new experience for her, and quite an emotional one at that.

Some of the drugs have been causing some interesting side effects. The doctors say everything is normal and to be expected, but one of the less pleasant effects have been hallucinations and vivid dreams. They seem to involve Maggie either being killed, or killing people she knows, or being eaten alive by alligators or ferocious dogs. Once she wakes up, she realizes that they are just hallucinations, but at the time, while asleep, they are extremely vivid and disturbing and she has woken up a few times in the middle of the night in a total state of panic. This should all subside with time, as her steroids are reduced in dosage.

She has been walking quite a bit the last few days. She doesn't need oxygen to walk, which is a mind-blowing experience for her compared to the last year or so. Today, she attempted stairs for the first time and did amazingly. We live in a town home with multiple levels and many stairs, so it's important that she can manage stairs before we go home.

We are waiting patiently for her fifth and final chest tube to stop draining so it can be removed. We think that might happen tomorrow, but you can't rush nature. If that's the case, then she will most likely be discharged the same day or possibly the next. Kerry will be living with us for a while as Maggie finds her feet. The two of us will have our work cut out at home, helping with medications, washing, exercising, cooking, etc. We won't be able to eat out or even bring food home from a restaurant for the first month. Initially, we will have to attend a clinic at Stanford two mornings a week. With time, these visits will become less and less frequent, but it is important to monitor the levels of anti-rejection drugs in her blood and adjust them accordingly. She will have no more breathing treatments at home, which will be quite amazing as these have been her lifeline since she was born. Instead, there will just be a handful of pills to take each day, which must be taken on time. The steroids are messing with her mind a little, they make her talk a lot (!) but also she can be a little forgetful and confused, as well as being much more emotional than usual. So it is important for us as caregivers to keep track of her pills and make sure she takes the right pills at the right time.

We are so thankful for her progress so far. There will surely be hurdles to overcome down the road, but for now we are taking each day as it comes. Thank you for all your positive thoughts and comments. It's wonderful to receive such love and support from around the world.