Say Cheese! Day 15 (Nov.20, 2008)

In Uncategorized on November 20, 2008 at 5:22 am


That’s Alex out for her evening stroll. No oxygen tank, no IV lines, no drainage tubes. Gary, her physiotherapist, is trying to get Alex to dispense with the walker as well. But for now, it is to Alex as a security blanket is to Linus. Sure is great to see her like this, and we both wanted you all to see it for yourselves!

So today began with a morning call from Alex. She’d had a rough night, and she wanted me to get over to the hospital. So I did. It’s not the first time that I’ve zoomed over there to find out that she’s not feeling nearly so bad anymore. Still a little shaky, but okay. So what’s a man to do? I would go if she said she had a hangnail at this point. It’s hard to leave her over there when we know that she’s going to be home soon.

Alex had yet an other night where her oxygen saturation dropped into the unacceptable zone. Needs to be said that she was on no oxygen support, as they are trying to wean her from this before they send her home. Nonetheless, this seems to happen around 2am to 4am, and it makes her panicky. Her breathing becomes shallow, the sat rate drops, she gets worried and can’t get her tired mind focussed. You can see how this is an awful sort of spiral. We think that perhaps it has to do with the fact that her body and her lungs are just beginning to get used to each other. Put another way, they are dancers who aren’t entirely in step with each other yet. The end result was that it made Alex a little freaked out and exhausted before her day commenced.

We attended a seminar with a pharmacist today. They are getting Alex ready to control her own anti-rejection regime. There are five main drugs that she will take to this end. The pharmacist walked us through the properties of the drugs, their side effects and usage. Alex will be on an even stricter drug program than she was with her CF meds. She won’t be able to miss a dose. These drugs are her lifeline, and need to be entirely respected. We also found out a lot about things to stay away from. Over the counter cold and flu medication, herbal cures, alcohol, grapefruit! She will be able to eat most foods without concern, but it turns out that grapefruit, as well as grapefruit seed extract and any juice that contains grapefruit will be very dangerous for her to consume. This meeting, with all its odd little bits of knowledge, seemed to set Alex’s mind at ease. After the seminar we ran into Gary in the hall and Alex did her physio.

Another milestone! Because we have stairs at home, Alex has to prove that she can climb up and down a flight. We went into the stairwell, Alex walking on her own without a walker and Gary handling the oxygen tank. She didn’t seem to really want to climb the stairs too badly, but we encouraged her. Told her it’s an important part of getting her legs back, now that her lungs are working for her. Gary winked at me and turned the dial down on the tank as Alex walked first up the concrete stairs and then down them. She was tired after she’d done them, but looked good. Gary asked “How do you feel?”. Alex said “good” and Gary told her she’d done it with no extra oxygen, that despite her fear she COULD walk those stairs all on her own. She was only slightly ticked at Gary and I for our subterfuge. I could tell that she was quietly proud of herself.  She was also pretty beat by the time the physio session was over.

We returned to her room and she lay on her back sort of dreamily. Many of you might not know this, but for the last two years Alex could not lie down flat on her back. If she did she would either be choked by fluids in her lungs or cough up a lot of blood. Like half a glass of blood. It is a miracle that she can now be prone like this, laying there happily with a bit of a post-workout opiate buzz. It makes me so happy.

So as Alex was on her bed the psych-social worker came in. Perfect opportunity for her to talk to Alex, and Alex obliged, speaking eloquently about her feelings over the last couple of weeks. So much different than when Alex felt besieged by “the shrink” that came in a couple days ago. They spent the better part of an hour talking, and after this I took my leave to let Alex rest. I also had a gig to play, and was relieved to get outside the hospital for a few hours, drink a whiskey and play some old-time country music.

I returned around 8:30pm with Mexican food in tow. Alex was thrilled to have “outside” food. In fact, this particular tacqueria is a favorite of hers. We ate and watched some videos that are required viewing for transplant patients. Industrial looking informational videos, replete with cheesy acting and 1990s fashion blips. The first was about a family who was going on vacation to Florida. The story essentially was used as a vehicle to show the steps that transplant patients need to follow to have a successful trip. The second video focussed on rejection and infection, two constant worries for anyone who is living with a transplanted organ or organs. Heavy stuff. We opted not to watch #3 or #4 of the series tonight, and went for a nice saunter around the 7th Floor. And that is when I snapped the picture of our Miss Alex, two weeks and one day post-transplant. Say cheese!

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