Reflections

It’s a week like this that makes me realize how impatient I can be sometimes. Last Friday I reported Jon’s hand splints missing and left a note for the occupational therapist that we would need new ones. I arrived late in the afternoon on Monday and she said we’d wait for a few days to see if they turn up as that does happen sometimes. Wednesday she said that she’d get her rep on Monday to measure Jon for new hand splints. Yesterday she measured him to see if any of the splints she has on hand would do until the new ones arrived. She had one for one hand and had to order one for the other…and the rep won’t be here until Tuesday. On Wednesday if all goes as planned a factory rep will come and measure Jon for a wheelchair which I gather will have lots of bells and whistles. He’ll need one that will have a pressure release, tilts backward, is a little higher on the back to support his head, etc. It will be more like a scooter than a wheelchair and will take 2-3 months to arrive. Dodd Hall was going to order one but we weren’t there long enough. We’ve been here at CRSI for a full month now. It doesn’t seem possible!

Towards the middle of last week Jon was started on still another round of antibiotics. This time for a urinary tract infection. They ran some other tests on his stool since we’ve been having a running battle with diarrhea. At that time the test came back negative for any problems but this week they were positive for something called c diff. This is when you’ve had so many antibiotics that they’ve started attacking good bacteria in addition to the “germy” ones. The balance of good and bad bacteria becomes out of sync. Ironically the way to fix the problem is with still another kind of antibiotic! We’re going to add yogurt to his diet and see if that doesn’t speed the healing process.

The wound doctor changed his mind about how well the VAC had been doing on Jon’s bedsore. It is about the same size in diameter but has gone even deeper. Without the clear bandage that the VAC dressing has it has been difficult to keep the gauze dressing clean and I was positive the doctor would not be pleased. My biggest regret is that we’ve lost two weeks in the healing process.

A reflection on Jon’s progress shows that while it has been slow going the progress is significant. Originally the doctors in Fort Wayne thought Jon would never be off a ventilator. He has had his trach capped for 4 weeks now, long enough for the therapist to ask if we’d thought about removing the trach. While we’re delighted that that is a possibility we’re uncomfortable remembering the times when out of the blue he has a huge drop in oxygen saturation and he’s had to go back on the ventilator…sometimes for just a few days but he’d have to have a new tracheotomy if this happened again.

Jon has once again worked his way up to real food and has learned to use a spoon to eat some foods--he’s working on the fork but I have visions of his stabbing the roof of his mouth with the tongs. He can’t quite get the fork up high enough yet. This week he has been very shaky and the food falls often enough that he gets discouraged. The occupational therapist and I have noticed that his arms very in flexibility. Some days his left arm moves more easily than the right and other days it’s reversed. She says this is quite common and to be expected.

It has been just a little over 6 months since the accident and while the progress has seemed extremely slow it is significant and on the whole better than the doctors predicted in Fort Wayne. It would be nice if these other health problems would dwindle out but in reality I’m afraid they are here for good. (There must have been a different way to teach me patience and convince Jon to give up smoking anything and drinking!)