Hello Everyone,
I appreciate that Jessica was able to post a message, as I have not been able to.

We spent the entire month of March at the apartment near Shepherd Center, with Tom doing fairly well at therapy.

We came home two or so weeks ago, and things have been crazy ever since. He seems to get new health complaints every day--when one medication or procedure helps something, then something else starts bothering him. It's been very demoralizing to deal with. Can't seem to ever get him feeling well enough to get on with life.

He had surgery on April 20 to insert a pump that delivers anti-spasm medication to his spinal fluid. It seems to be working well for his leg spasms, but other problems such as tightness in his chest (again) and tightness on down into his torso keeps him up at night. It's like he's being squeezed in the middle and can't breathe. A new condition has appeared--he now has what feels like his ribcage pushing into the area of his armpit while he's lying down. That keeps him awake also. Which means that I'm awake also to try to figure out how to relieve his pain or pressure or discomfort. I refuse to give him any more of the "designer" sleeping pills (ones that they advertise on tv) because they make him so wacko in the middle of the night that I can't take it. He has weird dreams and thinks he's got to move a car, or escape a fire, or drive a forklift, etc., and when I try to talk him into realizing that he's just dreaming and go back to sleep, he argues with me. He spends the rest of the night when he should be asleep trying to figure out what reality is... SO, no more sleeping pills... We're both worn out enough to sleep fairly well, once we get him somewhat comfortable, which usually lasts about 2 or so hours then he's awake and complaining again.

Since the surgery last week, he has had to lay on his back (or roll onto side) in bed all day and all night. Every time he raises his head, he gets a bad headache and nausea. These are symptoms that the area where they went into his spine is leaking spinal fluid. Today is the first day that he's been able to get out of bed for any length of time for a week. I was able to run some cable into the bedroom (formal living room) so he could at least have more to watch than soap operas all day.

So today I was getting the place ready for a wedding at Southern Oaks on the week-end. Tom was able to be up and so I took him there in the wheelchair (perfect weather for sitting outside) while I ran to get something to eat and to quickly go to Wal-Mart. I was trying to hurry, as always, so Tom wouldn't be left alone for long, and I collided with a car that stopped in front of me. She had pulled out onto the main highway and so I looked to the left to make sure no one was coming and then started to pull out to go right. Then bam! I didn't even know her car was there. I was driving the handicap van that we're borrowing from a friend. I'm very bummed out about this, although there's mininal damage to both vehicles. People keep telling me I'm tired and stressed out and need help, but I didn't think I was. Now I'm wondering. I've not had a good night's uninterrupted sleep for weeks. I'm trying to take care of him and run my business, which is getting very hard to accomplish.

I've hired a nurse's aid lady to come on Saturdays to help with Tom while I'm at Southern Oaks' events on Saturdays....hopefully she'll work out and Tom will like her. I need way more help than that but can't afford to hire anyone. Our insurance won't pay for a nurse's aid. I do have a homeschooled girl that comes and helps with dishes, folding laundry, etc. one day a week.

Hopefully we'll be able to get some kind of help soon. And hopefully, Tom will find answers to some of his health concerns.

Michele

Going Home Soon

Hello again,
I can't seem to have consistent internet connections here at the apartments where we're staying, so it's been hard to be able to update the blog.
After my last report where we were able to get about 5 night's in a row of sleep, Tom started having the same tightness, only it moved down from his upper chest area to his lower chest--around the diaphragm area. We have started experimenting with taking the medications at different intervals and different amounts, and this seems to help a bit. We don't get long, blissful nights of uninterrupted sleep, but at least it's manageable and we're not zombies all day from no sleep at night.

He is scheduled for an operation to instal a device (under his abdominal wall) that will cut down, and hopefully eliminate, his muscle spasms. It will slowly dispense an anti-spasm drug to his spinal cord fluid, "bathing" the spinal cord in the drug. We have met several people here who have had this pump installed and are happy with the results. We're hoping it'll help with the tightness in the chest, but that is a nerve problem we're told, not a muscle one.

Good news! He finally got his new wheelchair today! It runs great and is very smooth in operating. It is especially nice for making turns as he can turn directly from a stopped position, just as if a standing person turns around. This is very helpful for negotiating cramped spaces like elevators or our hallway at home.

Tomorrow we go home! We'll come back on April 20 for the pump installation operation and he'll be hospitalized for about 5 days. Then he'll recoup from that and hopefully come back to Shepherd for more outpatient physical therapy later on when he feels good. That should be in May or so.

Our friend is lending us his old handicap accessible van that has a mechanized lift in it. It needs modified for Tom's particular wheelchair, and we're hoping that won't take too long. We're anxious to get on with normal life, whatever that will be.....

Once again I have to apologize for not sending out thank you notes to those of you who have sent cards, letters, and particularly money. All of those have lifted us up emotionally, physcially and financiallly.

Gotta run, the bus is here to take Tom back to the apartment.

Michele