One year since accident!

Last night we found out that the wound itself is infected, with MRSA again. He started taking Bactrium DS, a pill, twice a day for 7 days. The x-ray was primarily taken to find out if there was an infection in the bone (which could only occur if the wound had made it's way back to the bone). Luckily there is no infection in the bone therefore we are assuming that the wound is not at the bone. The hole is too small to look down. Greg came last night and a friend, Paul, came to visit today.

"Hello everybody this is Jon. It has been one year since my accident. I have good news. It feels great to have my trach out. It does not bother me to swallow food anymore or when I move my neck around because the big lump in my throat is gone. The hole in my throat is almost healed. But it will be a little bit longer before it is fully healed. They keep it taped shut and change the dressing daily. The opening for my feeding tube is almost completely healed. It looks like I have two belly buttons now : ( In other words I have two innies!! Which makes me very unique. They are saying that any day now I can have my home evaluation (this will determine the amount of waiver he is eligible for. This is what we have been waiting for all these months.) After that I will go to Dodd for 3 weeks and then I will go home. So soon I will go home to everybody. Have to go. Love to everyone. Bye."

My title originally read "One step back, One step forward". I was looking at Jon's wound as being a step back. He is focusing on the fact that he is getting to go home soon. It reminded me that he has come soooo far since the accident that the wound is small compared to all the progress he has made. There will always be obstacles but it does not have to become a set back. He is not seeing the wound as a set back.

Good News, Bad News, More Bad News

Jon called me tonight and asked if I was coming over, I told him I was on my way. He said he had good news and bad news.

Good news: When I got there, he told me about his trip to the ENT (Ear, Nose, Throat Dr.) yesterday (Tuesday). His trach was totally taken out!!! He said it went very well, no hitches. He said he is able to swallow much better and can bend his neck without the trach getting in the way. When he took a drink, he was supposed to tip his head down so the fluid would not go down the wrong pipe. Those instructions have been removed.

Bad news: He has major wax build up in both ears. The last visit to the ENT (when they put a size 4 trach in) the Dr. had requested that they flush Jon's ear with a peroxide flush to soften the ear wax. The nursing facility apparently never got those instructions and his ears had not been flushed. The ENT cleaned the left ear and it was easier to get out. The right ear was too hard yet. They have given new instructions to flush the ear again. Jon has a follow up appointment with him in 2 weeks again. He is now able to hear out of his left ear. Jon has been complaining about that being his bad ear and that he has not been able to hear out of it very well. Now his "good" ear has become the "bad" ear.

Bad news: We knew that the wound was getting deeper. It has been confirmed for Jon. It is not getting bigger, but deeper. The wound doctor doesn't know how deep it is yet. They will do an x-ray on Thursday morning to find out just how deep it is(The Dr wants to see if it is back to the bone or not). Unfortunately, this particular spot will be susceptible to bed sores as the muscle is already gone and they have not put a skin flap over it yet so it is very tender. As a result of it going deeper, the Dr. has ordered a couple of things: 1) in order to take pressure totally off the bottom, Jon will be put to bed 3-4 times during the day. He will get up in the morning and eat breakfast, then go to bed for about an hour where he will be put on his side. Then he will get up again, sit in his chair for about 2 hours which will be over lunch time, go back to bed and get up for supper. Then he will go back to bed for the night. They said the Dr. wanted him to get him up again one more time but that would be within an hour of his normal bed time so he will just stay in bed for the night. 2) The wound vac is back. 3) The Dr. has ordered the bed that has the silicone beads in it. I have mixed feelings on this. I still say that it can't do it's job with a wound vac on. The last one wasn't working right as the beads weren't bouncing much anymore. If you aren't going to let it work right then why get it. They feel that it is a preventive but what we need right now is a treatment. But it's not up to me.

I think I have remembered everything.

An update on Mom. Her sister, Susan, picked her up on Tuesday and took her to their mother's house in Michigan. Mom is trying hard now to overdue it but not using either elbow or the left wrist is not easy and she is overdoing it. She ran out of the pain pills last Thursday (the Er only gave her a script for 12 pills) and did not get a new prescripion until Monday so her weekend was pretty painful.

Thanks for checking in.

Back on the Home Front

I was hoping Barb had some time to post this week but she's had her church responsibilities and brought me half way to Defiance Wednesday which didn't give her enough time to really visit with Jon afterwards. Before I left for Defiance I checked and found that they had no record of Jon's return visit to the ENT doctor on Tuesday. The doctor will hopefully remove the trach for good and clean his right ear. Jon now has transportation arranged. I also requested that they not take out the PICC line for IV's but again they are really afraid of infection which realistically shouldn't happen with proper care...Jon's veins are rather "tough" and I think it's hard on them to keep putting lines in and out. I would feel a lot better if he didn't keep getting infections or pneumonia every month or so.

I am trying my best to abide by doctor's orders but you can imagine how hard it is to weigh every thing in terms of "lighter than a coffee mug." The right arm has no cast , or sling, so it is getting a little more use than it should. I should also add that in addition to the fracture in one of the bones in my left wrist (which is in a cast) my left elbow also has a hairline fracture as does the right elbow. And the bruise on the left elbow is far darker than the right.

The fellas are learning how to cook. I walked Greg through the process of making breaded pork chops last night and Josh just finished making a meatloaf.

Must go--wrist aches from hunt and peck typing! Thanks for checking in.

The Good, the Bad and the Ugly

In spite of Barb's effort to take measurements and compare them with the height of the van, the angle of the chair and Jon's head did not clear the door upon entry. It required leaning the chairseat back so far that we had to push it in manually--all 450+ pounds. Then he had problems getting it centered so that it could be tied down properly. We finally got things fairly well situated and were off...and rather convinced that this was not the kind of vehicle we'd be looking to buy.
The day went very well. Everyone was delighted that Jon made it and was doing so well. People were in and out of the cabin all day giving them a chance to visit. He and his cousin Mark, also wheelchair bound, had a chance for long talks about adjustments and home modifications. We left about 7:30 with Angelique riding with us and Greg following so he could take her back to the campfire which they all enjoy so much. I sent them back about half way home and found someone to help me get the wheelchair unfastened. A worker got one side and showed me how to do it and I started to go around the van to do the same on my side. There was just one flaw...I forgot I was on the ramp and tripped. Jon described my fall as looking like I was diving into water with my hands straight out. I did a quick check and while I was sore everything seemed to work; fingers, arm, no bump on the head... just a broken fingernail that I had heard crack taking a good chunk of my fingertip with it. (I had been worried that it had been a bone snapping.) I got him all settled and unpacked the van and headed for home. I took an extra duty Tylenol and waited for it to work. Two hours later I headed for the emergency room. Six hours later, and at least 9 x-rays, I left with the finding of two severely sprained elbows and a possible fracture of the scaphoid bone at the base of the wrist on the thumb side which necessitated a splint. Later I had a call that the x-ray of the right elbow showed a fracture also. Tomorrow I get a cast on the left wrist and my guess is another on my right arm.
Today Jon had great news for us when we arrived saying that the feeding tube had been removed--one more goal met and another step closer to being discharged! ...and that it was his last day of physical and occupational therapy. I had a little chat with the head of therapy and that may not be the case. We think everything is a go for the power chair which he won't get until the week of discharge, whenever that may be.

Correction

Somehow there's an advantage to delaying a post. I got the distinct impression when I heard that Friday was the last day with the occupational therapist it was because she was leaving. I can't even imagine hearing the words "last day" without asking if she was leaving but somehow I misunderstood. She's still at the Village and supposedly Friday was to be her last day with HIM however, she fitted him with some sort of brace Monday to stretch his thumb on his left hand.

....and still more developments

The speech therapist moves fast! Thursday morning Jon headed over to St. Anne's for a full blown swallowing test. Food is "tainted" with barium and a machine tracks it as he swallows. Jon said it went well but I haven't heard the official results yet.

Thursday afternoon Jon and I talked about the whole physical therapy bit and how he needed something more detailed than the arm swinging he does during the pressure relief minute or two every half hour. So we decided that on days when no therapy is scheduled we would devote that same half hour every day to our own program. We're including more head movement since he still is relying mostly on looking at you out of the corner of his eye instead of moving his head and looking head on. Also including shoulder shrugs and arm movements. So when when his occupational therapist announced that she was leaving also Jon told her I was already starting to do therapy with him.

Yesterday I managed to get some time to cut his hair--Thursday I soaked his hands so I could trim his nails. Last night the nurse told us that the throat culture that had been taken earlier in the week showed that the type of pneumonia he has was resistant to both zosyn and cipro which is what he's been on for the last week. Another medication will be started today, my memory fails me at this time as to what it will be.

Arrangements are coming along for him to attend the family reunion next Saturday. Barb's located a van rental agency that has vans that are equipped for wheelchairs and we have tentative approval from the doctor. Jon's really looking forward to the trip and it will be a good trial for the long trip home since this is a two hour trip one way. Thank goodness his chair tilts way back and he could get a nap in either direction,

Thanks for checking in. I won't be back until Tuesday when I bring Carol.