Tomorrow

The infection at Pete's pump site has not cleared sufficiently enough that the doctor is satisfied. It is much better, not as red, not at all hot and not blanching to the touch, but there is still significant signs of infection. He is scheduled for surgery to have the pump removed tomorrow late morning, early afternoon. This is sad news for Pete and me. Although I don't think he sees the benefit of the pump as much as those around him do, the medication has given him significant relief. When or whether the pump will be reimplanted is not clear at this time.

Since they are going to be performing surgery on a spot known to have not only a foreign body (the pump) and also significant infection, the risk of complication is quite real. Continued prayers for all of us are much appreciated.

Things you don't want to know

1. Why you don't want that nice close up spot in Garage Number 1 (it's a bitch to get out of).
2. What times lunch is served in the Market Place (11 to 2, and the asian line is long, but worth it).
3. Whether or not the nurse has any kids (2 and they're sick today).
4. Exactly how long it takes to get to the hospital at "x" time, how long to park and which elevator really moves faster (in the morning 30 minutes, no traffic 15 and the service elevators are much better).
5. How to restart the infuser when it beeps that there's a "partial occulsion patient side" (well, I'm sure as hell glad to know that now, because I've listened to those alarms for way too long!)

So, Pete's back in the hospital.

I guess it was 2 weeks ago, I noticed that there was a red spot around the pump site. On Thursday, the 11th, I noticed it was red, warm and blanched to the touch. So, I get on the phone to the neurosurgeon, his PCP, and the baclofen office at TIRR. That day the neurosurgeon's nurse was on vacation (and he was, as always, in surgery), his PCP was out sick with the flu, the regular nurse, and Pete's doctor, at TIRR were both out of the country. So I interfaced with the doctor's secretary, Rosie, who ran the doctor down for me, got a prescription for antibiotics called out and set up an appointment for the next Monday.

Pete went by himself (which was a tactical mistake on my part, hard to ask questions when you're not there) and the doctor said "yup, looks like an infection to me, take these pills and I'll see you next Monday". Wednesday evening, however, I was alarmed to see that the redness had spread significantly and the "warm" was now "warm to hot". Thursday, I started calling all the same people, and getting the same responses, but we were scheduled to go see the nurse on Friday morning at 9:00 a.m. She took one look at it and made a 'holy shit' face and said "I'm going to go see if I can get the doctor on the phone" in that calm but urgent nurse voice. I got Pete admitted to Methodist at 10:30. He's been there getting iv antibiotics since then. A resident went in on Friday evening and drew the perimeter of the infection site to see what happened. Yesterday, it appeared the infection had retreated to where it was last Monday.

This morning, Pete called me at 6:45 to tell me a different resident was in, said the infectin wasn't gone so probably surgery to remove the pump. I spoke to America (the nurse's name, and I love it) this morning and she said that's what the resident told her and he said there was no change in the infection area. I told her that wasn't true, that it had receded a good bit and the swelling had gone down. She said she'd send Dr. Simpson in to look at it and he'll make the call if we continue the IV or wean Pete off the baclofen and remove the pump.

What could cause an infection at the pump site after 6 months is a mystery to me, and to the doctor. It does not really matter because there is a significant infection in there that needs to be addressed. This is obviously not a positive development for us at all. I would say the odds are about even that they will be scheduling him to remove the pump and later reimplant it. This means this entire process of surgery, recovery, laying off therapy and then going inpatient will have to be started all over again. None of this is consistent with our plans to get our lives back.

A boring weekend

Wow--time has passed in a blur. Just last week was the weekend before Thanksgiving, right? Normally, I'd take time to breathe during January and be all recup'd from all the holiday activities. Not this year. We went from holidays to inpatient treatment and this was our first weekend, since mid November where there was nothing going on at all. Anna even crawled into bed with us and slept until 8:30 on Sunday morning, which beat Saturday when she was up before 7.

Pete continues to do well. He needs a bit of prodding to keep up with the brace and walking, but now that we have the right size shoes (I had a small brain fart) it should be no problem. Yesterday, while I was doing I don't even remember what in the kitchen, Pete sat on the floor with Anna and played ball. I had to take pictures it was so cute. I cleaned the house, washed clothes, went to Little Gym with Anna, did grocery shopping, went to church and cooked. I can go for a few more of those.

Dang--3 weeks goes by fast

when you're running at full speed.

We checked Pete into TIRR on January 5, and he comes home, TOMORROW! We are very happy in our house tonight. Anna was having a hard time getting to sleep, but she's down now.

I have to say, and I'm sure Pete will agree, there is a world of difference between being admitted to a stroke rehab facility when you're not completely well from a medical perspective and when you are. They had to start him very slowly last time, he was still having periodic a-fibs, low blood pressures, tummy troubles (and of course that very annoying case of gallbladder disease) and significant cognitive difficulties. He would do 3 hours a day, in Occupational, Speech and Physical therapy. This time, he has those 3 hours, plus 2 or 3 "groups". One of those groups are cognitive, but the other 2 are exercise related classes. So, he could be spending as much as 4 hours a day doing physical or occupational therapy.

You have to know if you could spend that long every day working out, you'd have some progress to report. Well, Pete has done quite a bit of progressing. Of real import is that the tightness in his achille's tendon has been resolved and he's now standing flat on his feet. If the standing exercises hadn't worked, they would be scheduling him to have it lengthened surgically, which would have again delayed his recovery. He is much steadier on his feet and has gained a good deal of strength in his left leg. Because he's in the exercise classes, which are a whole bunch of stretching, his PT has really concentrated on the main event, walking.

Today, I went for discharge training, which I thought was pretty pointless, as we've already been to this rodeo, but it turned out to be a good refresher for me too. They have fitted him with a semi-rigid brace for his ankle and lower leg which makes a big difference in his stability. Anyway, this was a full hour of watching the therapists help Pete walk. Actually, he's doing all the work, all they (and I) were doing is helping him shift his weight from left to right. Ended up he walked enough to equal a short trip to the store. Most of it is very "normal" looking, every now and again he still has short steps, and he's sooo easily distracted. They started him off on a cane, but he was using it for too much weight bearing. They switched him to a thin metal pole. I told the therapist it looked like a ski pole. That exactly what it was. Very light, very thin, and not there at all to bear weight, and that's what he'll be working with next. At the end of the session, they had him walk up and down a full flight of stairs. Seriously, I'm not kidding. Obviously, he had help with the mechanics of the thing, but the strength was all his.

I'll go get him tomorrow at 10:00 or so and bring him home.

TIRR-Inpaitent

Last November, Pete had a baclofen pump put in--and man is it a cute little bump on his tummy. It has been working quite well and doing its job. The muscle spacticity which has made Pete's life miserable for almost a year now is under control.

Not sure if I mentioned this before, but the problem really makes for all sorts of life problems. You know when you're falling asleep and your leg jerks and you wake up suddenly and wonder what that was? Pete would do that all night long, no way he could get a decent night of sleep. Since the pump was put in, he has done much better. Downside of the medication is that it is a central nervous system depressant (duh) and it does make Pete feel tired a good bit. He had some post surgery issues, which have resolved, and he's been released by the neurosurgeon for further therapy as of new years eve.

This afternoon, Pete and I got a call from the admissions people at TIRR, and a bed has opened up for him. We'll go tomorrow to check him in at lunchtime. The prospect of Pete getting 5 or 6 days of therapy is very exciting, although I am going to miss him terribly and feel very sad. We told Anna about it tonight and she said "no", no drama, just "no". I explained Daddy was going to the big gym to get better. No she doesn't get it really, but she said something like "can I have a samich for dinner", the 3 year old version of "since I don't have a choice, I don't want to talk about it anymore". I will not tell you what Steve had to say, because I think any bets on the subject would be sucker.

I'll try to keep everyone posted.

New Developments/Technology

All--it has been a while since I've posted. Let me bring you up to speed.

Pete started The Challenge Program at TIRR Kirby Glen at the end of August. I had expected mid September, and was very happy to get him in sooner rather than later. He is there either 3 or 4 days a week, spending 1 to 3 hours in physical, occupational or speech therapy and several other hours in groups and classes. Some days can run to 5:00 p.m., which makes for a late afternoon. He has been doing very well and I can't imagine it is not immensely helpful for him to have contact with others who are in the same boat as he is, if on different levels. I have noticed significant cognitive improvements as well, and an improvement in his overall out look on things.

He has been dealing with a very serious case of muscle spacticity. Basically, the brain sending way too many messages to his left side trying to get it all to work. This makes his therapies very difficult and also is very uncomfortable. You know how you're falling asleep and something jerks and you are wide awake again? This happens to Pete all the time. There is an effective treatment for the problem in a drug called Baclofen. Unfortnately, it has some pretty obnoxious side effects. It has another method of delivery with a surgically implanted pump to provide a continuous flow directly into his spinal fluid. He went on Monday to have a trial and it went very well. I have just spoken to the surgeon's office and he is now scheduled for surgery on November 19.

After some recovery time, probably 6 or 8 weeks, he will do another stint as an inpatient at TIRR. Neither of us are very impressed with this concept, but it will be essential to build strength in his lower body.

After the trial, they pulled on him in every direction. Basically, bent him around like he's gumby! After that, they put him on a thing called a Gait Mat, which is a long mat attached to a computer to see how evenly he can walk. They put him in a forearm crutch and he did very well, and after he had several steps down, it looked fairly normal. This is the effect of the Baclofen working on him. I can only see good things in the future with him using this.

More later.

Our tax dollars at work!

As you may know, Pete was discharged from the outpatient therapy program at TIRR back in March for a couple of reasons. First, the medications he was on were making it impossible for him to focus on his therapy. Second, our insurance benefits were getting close to gone. Well, "close to gone" meant, absolutely no more coverage.

Since then, I have been working on getting him some additional assistance through whatever agencies might be of assistance. Through the aid of one of the attorneys in the office, I have gotten in contact with PTB (powers that be) in Austin in the Department of Aging and Rehabilitative Services (DARS). We got an initial appointment in mid-May to get into the system and get the ball rolling. We had delays because of medical records, and what I consider to be a pretty bad attitude on the part of one of the coordinators at TIRR, who discouraged me from working with DARS in the first place.

Today, we went back for a follow up, and to sign an Individualized Plan for Employment, with a goal of getting Pete's butt back in a desk chair planning and scheduling maintenance jobs. What he will be getting is 32 weeks of Challenge counseling (memory work, group assistance, etc) and a full hour of PT, OT, and Speech Therapy at each session. In addition, they will provide transportation assistance, either by paying an individual to do it or by providing a service to carry him back and forth for the sessions. I was really floored. All I had read told me he would not be eligible for physical or occupational therapy as a stroke patient, only cognitive rehab. I had been looking into a private pay physical therapist to get him back on his feet (literally) and it would have been a stretch and not the same quality as TIRR, but something. Looks like that won't be necessary at this point.

From the local office in Richmond, his file will be transferred to a coordinator in Houston who will work with Challenge to get the ball rolling. As you can imagine, I'm happy for that to happen, I don't know, say, TOMORROW. The counselor will also be referring him to an employment counselor/advocate who will help Pete in that way too. I should expect to hear from the woman in Houston in the next couple of weeks and then he'll be on his way.