May 11, 2006

When I went back for yesterday night's visit, Gary was breathing easier – and therefore, so did I. In fact, he said he hadn’t coughed at all in two hours, whereas ever since his breathing has been supported he has coughed regularly. It seems he has more trouble breathing when they put him on his left side – the conjecture is that that is because it makes the right lung work harder, and that is the more damaged one. We watched more of “Walk the Line” until his nurse, somebody he hadn’t had before, came in. “Bull in a china shop” came almost immediately to mind. After suctioning him – which he hadn’t sounded like he needed – she decides to look at his cannula and yanks it out of his trache hole, causing a look of surprise tinged with alarm to register on Gary’s face. Then she shoves it back in, fooling around with the collar, and Gary immediately starts coughing again. He obviously starts struggling for breath, and at one point it looks like he can’t breathe at all. “He’s having trouble,” I all but shriek. Fortunately the next moment he starts being able to get air exchange. She asks if he’s been having trouble breathing. He spells out “I was fine until you removed the cannula.” She explains it’s something they have to do once a day, that this is normal. Yeah, right. Get someone else to remove it then, someone with a more gently touch. Then she decides to turn him, and again it appears to me he is being roughly handled. “Oops, sorry about that,” she says as lets go of him too soon. I’m standing there deciding between having a heart attack or throwing her out of the room. “Be careful,” I want to yell. Of even better, “Just leave him alone.” When she finally gets him situated he does sound like he needs suctioning. I’m wishing I could do it as I don’t want her near him. She pokes that tubing down his trache hole but can’t give him any relief, and I want to yell, “Get someone who knows what they’re doing.” She apparently reads my thoughts and finally takes off to find the charge nurse. I stand next to the bed trying to give Gary an encouraging smile – or at least not let my anxiety show. The charge nurse, an older woman, determines that Gary has slid too low in the bed and it’s causing the angle of his neck to obstruct the suctioning tube. She gets him taken care of in short order. The two nurses leave and I stay next to Gary stroking him and trying to appear nonchalant as I hover over him, not wanting to leave him to this nurse straight out of Stephen King’s “Misery,” wondering how long before she bathes him and if I dare stay that long to keep my eye on her. Gary reads my thoughts, spelling out, “The old nurse seems to know what she is doing. I’m okay now.” I’m dubious, but leave after a few minutes more.

I found it hard to settle down for a long while after that, but once I fell asleep I again slept pretty good, comparative to my first three weeks here.

Before seeing him this morning I searched on the web for anything that might allow me to compare Spain and Shepherd more closely. I didn’t find anything, but maybe I’m not looking in the right places. When I went over to see Gary, I ran into the BC/BS case worker. She said she’d just spoken with Gary. They still hadn’t gotten the information from the docs about whether Gary can bear weight on his hand. Blue Cross will pay for only 21 days of rehab, so we don’t want to send him to either place until he can get the most use out of it. Gary and I talked some more about it, and we’re still leaning toward Shepherd. A little later, while Gary was reading the sports section, a trauma doc came in. He said Gary could bear weight on his right elbow for any rehab purposes. He also said he was sending in a speech therapist this morning to see if Gary could be fitted for a speaking valve, which might also enable him to start eating, and that he would probably be downsized to a four tomorrow – or they may even remove the tube completely. I told him Gary had said his breathing had suddenly improved yesterday evening after being difficult for so long after the new tube had been put in. The doc said that Gary’s trachea was hypersensitive, so the jostling around that they had done in downsizing the tube had probably irritated his trachea and caused him to produce more secretions – but that it would be good to downsize him again, anyway, to which of course we agree. I also mentioned about the cast. Naturally, it wasn’t his area, but he said he’d mention it to the orthopedic docs to see if Gary could be reevaluated to see if he could have a lighter cast. Finally I told him what BC had told us, and that we would like some input from the doctors as to when the optimal time would be for Gary to have rehab, as it was our understanding that it is good to do it as soon as possible on the one hand, but we have the fact that he can’t yet bear weight on . . . er, the other hand. The concept of determining an optimal time for someone to have rehab seemed a new one to the doc, but it obviously piqued his interest, and he said he would bring it up to the other docs. I hope he carries through.

After the doc had left, I brought up the previous night, asking Gary how he’d gotten along with the new nurse, saying I’d been a little afraid to leave him alone with her. He spelled out, “I doubt any of the nurses would kill me.” I wasn’t so sure that that particular one wouldn’t have managed to do so and probably conveyed that it in my look. He spelled out, “You are a mother hen. It’s sweet.” I’m glad he thinks so – my little sister probably would’ve tied me down.

Next, the speech therapist came in to do a few simple tests. First had him breathe in, then she closed his trache hole with a finger while he said, “Gary.” It was very soft, and he sounded a little like Donald Duck. Next she had him try “Gruenhage,” and that sounded more like his own voice but with little volume. Next she did some swallowing tests – he took little sips of water colored with green food dye. After doing that a short time, she suctioned him. No green came up, so that was an indication he hadn’t aspirated any of the water into his lungs, but it is too simple a test to determine that decisively. Later today she is returning to put a camera down his nose (!) and watch while he eats a few things, to make sure things go in the right place. She said not to worry if he wasn’t successful at the talking with the trache cap or the eating right away, but that the results of her simple tests were encouraging. After she left I asked him how he thought he’d sounded, and he said “airy.”

The speech therapist also was interested in the laptop desk, and I told her I’d gotten it off the web at lapgenie.com. Maybe B’ham will soon be incorporating this piece of equipment for their patients. In which case, maybe I should ask lapgenie for a commission ;-)

We then read the mail, after which Gary wanted to rest. I set up one of the tapes of “Car Talk,” which had just arrived from the Vaughans, and left.

Mail call: Thanks to Gary’s mom, Raushan Bouziakova, Jan van Mill, Paul Larson, Jed Keesling, the Auburn Math Dept., and the Vaughans.

Someone asked me how it is that Gary can breathe on his own, given the severity of his injury. It is because of where the injury took place – T4, nipple height. Had the spine been as severely injured at the cervical levels C1 or C2 a ventilator would be a necessity for breathing. See www.sci-info-pages.com/function.html for other details.

During my afternoon visit the speech therapist returned. First she stuck the speech valve over Gary’s trachea hole and had him say his name. This time I couldn’t really hear him, though after a few tries some sound did come out. He didn’t really like the experience, later telling me he felt like he had for so long yesterday when it was so hard to breathe. The therapist asked if the valve made him feel anxious, and he nodded. She had him keep it on for a minute while just breathing, all the while assuring him that his oxygen saturation level (which has been kept track of constantly since he’s been at UAB, showing up on a little screen behind him) had stayed above 96 the whole time – they want it above 92. I volunteered to aid her in the rest of her tests instead of getting a nurse to do it. She stuck the camera down his nose (on the end of a filament of wire), and while she held it in place, I gave Gary green-dyed things to eat while we watched his windpipe on the view screen. We started out with ice chips. What the therapist was looking for was to make sure no green was seen going down the trachea (which would indicate the food was going the wrong place). Next we did applesauce (which Gary later pronounced “good”). Next some thickened juice, then water, then little chunks of peaches (I took her word for what those little green chunks were). No problems whatsoever (except for me dribbling green dye all over Gary’s chest), so she said he could start getting back on a normal diet, starting with a full liquid one. That got a big green smile out of Gary (we brushed his teeth afterwards). This is the first thing that has happened ahead of what we were told – we thought he wouldn’t be able to start eating for another two weeks.

One thing the camera did show was that Gary has a lesion on his vocal cords. The therapist said that may have happened when he was first intubated (when he was on the ventilator) at his first surgery. The hope is that that will naturally heal up.

Soon after that the orthopedic doc came in and took out the stitches in Gary’s bionic finger, the finger still looking rather swollen. Gary had only a brief respite from the plaster cast since the doc put it right back on. He said it would stay on the full six weeks, then x-rays would be taken to see what should be done next. It seemed to be news to him that we were ever told Gary could have a lighter cast put on earlier than when those six weeks are up.

As the doc was removing the stitches, someone brought in Gary’s first meal: cranberry juice, another juice I’m guessing was grape, fluorescent yellow jello, and a cream soup we thought was probably potato. I set up the tray on Gary’s lap, and he fed himself a little bit of the soup and of the probably grape juice. Then I left him to rest.