Sorry for nodding off on you all last night. Yesterday proved to be a long and exhausting day for all of us. In my particular case I was running on only three or four hours of sleep, thanks largely to my knuckleheaded neighbours who decided to party outside until 4 in the morning. On a Thursday. Geez, you’d think they were twenty-five year olds or somethin’, eh. Which they are. So I was not exactly firing on all cylinders yesterday. Well, having had a good solid 10 hour sleep last night I will attempt to get you all caught up on Alex’s progress.
Yesterday Afternoon (ie after Alex wrote “Howdy Gang”)
As Alex wrote yesterday, she had her broncoscopy in the early afternoon. She maintains that despite the anxiety going in approaching it, it was actually one of the least rankling experiences of her day. The procedure went smoothly, and from all accounts the doctors said her lungs are looking good. They took about ten tiny pieces of tissue from her lungs, and will be processing them over the next few days, encasing them in paraffin wax, slicing thinly and examining them under a microscope. Until then, Alex proceeds “as if” she is being treated for a rejection. That is to say, she’s being megadosed (more on that later).
When Alex back into her room, rolled along on her bed by two orderlies, she was told that there would be a change up in her pain management program. They’d taken away her push button morphine, and intend to move her to pills instead. There are, no doubt, many reason for getting Alex off of the pump. Many well-thought out ideas, I am sure. That made no difference to Alex as she became very upset that she would lose some control over her medication. In fact, she was pretty much terrified and furious at the same time.
Let me paint a picture for you. A patient returns to her room after having a camera and a robot knife pushed down her throat. She is coughing up little blood clots from where the tissues were excised. She is attached to to chest tubes (fortunately many of the IVs had been removed) and is still dependent on us to move those tubes (actually small hoses connected to drainage containers or boxes) so that she can get around. While she has been absent for this procedure they have also disengaged the IV that puts the pain medication into her body, and discontinued the morphine prescription for a less effective one. Oh yes, the stitches around her chest tubes throb with pain when she moves around. Not a pretty picture, correct?
Alex was very angry that she was not consulted about the switch up in pain management, and she got her nurse to get the “pain doc” to come by. We knew that this would mean hours, not minutes. While we waited it seemed as if people started flooding into the room like a yellow-scrub clad river. First Gary from physio came in. Good guy and always an encouraging part of the day. Then a couple of other nurses doing tests. Then a resident doctor. Nope, he can’t control the push-button meds, that’d be pain services domain. Alex was getting really rattled and pissed off. Then the shrink arrived.
The timing could not have been worse. Alex had apparently contacted her social worker Ursula the day before. Ursula is a really down to earth straight shooter, and Alex always appreciates her candour and no-nonsense approach to transplant recovery. She also grew up in the house across from us on Mitchell Avenue! (Small world…err…town). She’s a gal from the the ‘hood. Alex had hoped for Ursula to ease her mind a bit, perhaps to recommend some drug-free ways to relax. Maybe point her to some people who could help her in this regard. Sounds like she might have sent the wrong envoy…
Maybe it was too busy in the room. Maybe the stars were just not aligned in proper fashion. Might have been a slight case of “roid rage”. But Alex blew a gasket anyway. She yelled at her and said “I don’t need a psychiatrist! I need control over my medication! I’m in pain!” The psychologist continued in a calm tone. Told Alex that she was there for her if she needed help, needed some cognitive or behavioral strategies to help her cope. That sort of thing. Alex smashed her fist into her hand. It actually sounded like a punch in the room. “I. do. not. need. a. shrink!”, she yelled. “I need my button back!” It was really hard for me not to laugh. I would be doing exactly the same thing as Alex. I would want control over pain medication as well, because we both know that when you are hurting the last thing you need is to wait for a nurse to find a prescription, get it to you, and have it dull your immediate pain in less than 20 minutes. The psychologist told Alex that that push button medication is the domain of pain services, but if she wanted to talk about it…
I stepped in and got the handsome psychologist lady to the door. I told her that Alex is not usually so agitated, and that she might want to return on Monday to chat with Alex if she thinks it’s necessary. Or if Alex thinks it’s necessary. Also told her that obviously Alex is an articulate and self-providing woman, but that she is currently enmeshed in a situation that is frustrating her beyond measure. So we bid her adieu.
I came back into the room and Alex, Connie and I had a good laugh about the situation. Alex said that she really didn’t think some chick in a silk blouse and $800 glasses was going to help her much today. Or anyday for that matter.
I guess the psychologist did pass on some of Alex’s concerns to Dr. Hepperman, as he came back to the room a little later (once the dust settled) and assured Alex that her pain management would be somewhat different (ie. none-patient controlled) but that the team would still respond to each and every request Alex made for pain medication. He also talked to us about how the drugs would get into her system, and that there is still the IV option if she wants or needs immediate relief. The doctor understands that Alex has always been excellent at controlling the many CF drugs she had/has to take, and also realizes that most of her anxiety stems from a loss of control in this respect. It was good of him to come in and straighten this all out for Alex. It lightened her spirit.
Well after this fracas Alex rested up with her mom. They watched the Sex in the City DVD and I took my leave for a Beer in the City.
Last night I got Alex up for a walk. She did great, and her sats were great too. It is very quiet on the floor after 9pm, so it sort of felt like a nice date. When we got back to her room I was really starting to slow down (body and brain-wise) from lack of sleep. That could only mean one thing…The Russian nurse arrived without knocking (Alex says all the Eastern European nurses do this, for some reason). She turned on all of the lights as bright as they could go, and proceeded to do what she had to do. Dressing changes, blood sugars, meds. All this around midnight or so, but I felt like a mole in the midday sun. Alex seemed to take it in stride.
After the nurse was done we just tried to relax and sit in the dark. It was hard for Alex to settle down as not only was her mind racing from the days events, but she was also surfing a wave of heavy duty steroids. She had the munchies, she was talking really fast. She didn’t seem very tired at all. Just sort of vibrating. She finally started slowing down a bit when some of the sedatives and painkillers comingled and hushed the steroidal wave. It was hard to leave her knowing that she wasn’t quite close to slumbering, but she told me to go home and get some rest before I turned into a zombie.
Today Alex’s mom Connie hung out with her for most of the daytime hours. I slept in and did household chores that have been left for 10 days or so. I came by for the “night shift”, a time of day which Alex and I both enjoy as the floor gets a little quieter. If all has been organized properly before the nurses’ shift change, and the ducks are all in a row, we can have a relaxing time. It worked out that way tonight.
We got Alex’s medicinal needs all settled early in the evening. I got filled in on what had happened through the day. She had a good conversation with Dr. Hutcheon (one of our favorites) concerning what had transpired over the last 48 hours or so. He had some encouraging things to say. Mostly of the “there are bound to be a few bumps” variety. There was some trouble with Alex’s picc line in that her arm swelled up around it. They were worried that she might not be able to get her steroids delivered this way. Dr. Hutcheon arranged for an ultrasound of the arm on Monday to make sure everything is okay. For now she is receiving her meds through YET ANOTHER IV insertion in the back of her right hand. My wife, the human pin cushion !
Lots of physio through the day. Another good walk (her longest yet, with the best O2 saturation as well). When I arrived (previous to our conversation above) Alex was just starting to take a nap, so I started reading a book and before you know it I too was having a snooze as well. We both woke up nicely refreshed, and began a fun and mellow evening.
Our nightly stroll on Floor 7. This, of course, was done for Alex’s physiotherapy. But the walks are also starting to reveal to us the little culture that is the transplant wing. We see the daily routines of the nursing staff, say howdy to other patients in their rooms (the ones that are ready to speak), and pursue a very strange investigation. Alex has been hearing music almost constantly. The same songs, as if they were on a playlist. Modern pop music songs that she doesn’t really like all that much. What is strange is that no one else hears them. That’s not as odd as it sounds; Alex has extremely sensitive hearing. She describes them as they appear to her ears, and thinks perhaps they are coming through the ventilation system from another part of the hospital. One in particular that she keeps hearing is “We Are the Champions” by Queen. But there are others, all almost exclusively pop music. It’s intriguing her and driving her nuts at the same time. So we are constantly searching to find out if one of the rooms has a radio on all the time. Hey, it passes the time, eh.
Our walks are becoming more and more extensive (and not simply because we are looking for the source of the music). On a more profound note, we stopped for a time and looked at the “Wall of Heroes”. This is a group of photographs and short biographies in memoriam of those who’ve donated their organs. It is extremely touching, and one cannot help but be moved to stand there in front of these generous souls. It’s also pretty striking to read how full of life these folks were. Despite their different backgrounds, almost every person was described as vivacious, fun-loving and caring. I cannot say enough about how much a difference these people have made by this final most thoughtful act.
We got back to the room after a time and got Alex settled onto her bed and decided to watch one of our favorite British TV shows on the DVD player. It’s called The Mighty Boosh. I’m not going to begin to describe it here, but it’s funny and charming and always makes us laugh. In fact, sometimes it makes Alex laugh so much it hurts. She still is not capable of her big laugh yet (you know the one I’m talking about), but she is most definitely working her way up to it, and it’s fantastic to hear her. At one point, though, we did have to stop the movie to watch the SNOW FALLING DOWN outside the hospital. Yep, a snowfall with thunder and lightning at the same time. We both love when this happens, so we took some time to sit in the dark and watch it come down. A beautiful sight, even though it portends the arrival of Winter.
Alex was ready for sleep earlier than usual tonight, so after our evening together I bid her a sweet dream or two and headed home with the snowflakes twirling all around me.