Relief at last!!

Well folks, I have to thank all of you for your prayers. We have finally had a meaningful explanation from Tom's doctor about what the tightness in his chest is about, and what to do about it.

I will go into the explanation at another time because my computer hook-up is not working and I'm using a hospital computer.

We are thrilled to let you all know that the doctor has prescribed 2 new "designer drugs" that have been just about miraculous in how well they work to get rid of the chest tightness. As soon as he started taking them, which was last Thursday, he noticed immediate improvement. We have gotten 4 nights in a row of decent night's sleep, and we feel so much better. Tom looks and feels much better, and we were able to go to church for the first time since December.

We are sure the nausea, headache and vomiting last week-end were side effects from the spinal tap, probably a slow seepage of spinal fluid, which is why it showed up several days after the test. That has cleared up now and the urinary tract infection seems to be under control.

We are so thankful for all of your prayers on our behalf. And with all the drugs he's having to take, we are thankful that Tom's condition is responding to this medication so well. We are excited to face a new week with Tom feeling pretty good...it makes doing the grueling therapy much more tolerable.

I'll try to keep you posted better, but the internet connection at the apartment where we stay keeps going out.

Michele

Bad Week-end

On Wednesday, Tom had his test for the pump to be installed that delivers anti-spasm medication. This involves putting a needle into the spinal fluid (basically a spinal tap). A person should not sit upright for several hours after having this procedure, to prevent headaches.
The test went OK, but did not yield the results that we were hoping for.
Tom's leg spasms, which are unexpected jerks, were helped by the test and so should be helped if the pump in put in him. His worst complaint, however, is the increasing tightness in his chest and back, which ffles like someone is squeezing his chest and there's a bowling ball pushing at his back between the shoulder blades.
This is not super painful for him, but it makes it extremely difficult for him to breathe and it keeps him awake and squirming every night. We are getting less and less sleep each night. Sleeping pills make him looney and talk in his sleep and argue with me in his sleep. (I try to convince him that whatever he thinks is happening is really a dream.) He squirms almost all night, wrestling with the covers, trying to move his legs or calling me to straighten or bend them, sometimes right after I just did them. The loss of sleep is getting to us.

He got sick on Thursday with a urinary tract infection. We came home for the week-end. He started throwing up on Saturday, particularly when he was sitting up. This is possibly a sign of a complication from the spinal tap. He was still throwing up on Sunday. (I had parties to conduct on both days and had to leave him at home with other people to tend to him while he was sick.) It might also have been a reaction to the new medication for the UTI. Or maybe another complication from the pump test. who knows??

Monday he was still sick-ish so we did not go back up to the Shepherd Center for his day program. Tuesday (today) I thought he was getting better in the morning, but is back to being puny this evening. Can't breathe thru his nose and having headache and nausea when sitting up/can't breathe thru mouth and having to suffer the extreme tightness in his chest when lying down. It's gonna be a bad night again, I can tell.....

Tomorrow, (Wed.) we have got to get back up to Shepherd--the doctor really wants to see Tom in his office. Fortunately, Glenn, our handicapped friend who drives us up there, is willing to take us Wed. morning. We're praying that he'll feel better tomorrow. And that we'll get some sleep tonight.

Thanks for all your prayers, money, meals, yard clean up, and support....

Michele

FINALLY!!.....an update....

Sorry for the long silence......I hate to keep using the word "overwhelmed," but that about covers it for me. I have not been near a computer, e-mail, our home phone or mailbox for days.

Here's a brief update......

My cellphone got thrown away by a hospital maintenance person....long story.... and my modem at home broke, so right when Tom was being discharged, I was not able to really communicate with anyone.

He was released from inpatient care on Tuesday, Feb. 28. We went home for a few days--we have a hospital bed, lift, and loaner wheelchair with us, and it was very good for him to go home finally. I had to have some words with several people there to have them let him go home.

All last week (Mar 6 - 11) Tom began the outpatient program, called the Day Program. He goes to classes/therapy, etc. from 9 to 4, Mon. - Thurs., and half a day on Friday. They provide us with an apartment to stay in, which is very close to Shepherd Center. I have to be with him all day and all night, or within a 10-minute distance.

Yesterday, (Friday), we came home for the week-end. We can only do this because we obtained a manual wheelchair from Tom's sister that I can fold and put in the car trunk, and I have a lift to put Tom onto the front seat of my car. The lift can be taken apart and fits in the back seat area of the car. It's cumbersome but gets the job done, and makes going home possible. The weather was magnificent yesterday and today and Tom sat outside with Jessica a good part of the day while I was able to go to Southern Oaks for a few hours. (Jessica is home for a few days on spring break from law school)

We are still waiting for his new permanent wheelchair to arrive. It is a power chair, which he needs, but it's small enough to drive into a van that a friend is loaning us once we get the chair. That will make things a ton easier.

Tom is responding well to the day program. It's hard and taxing on his system, but he is learning coping skills. He still has no movement in his hands, legs, or torso below the chest. He has a lot of pain in his hands and arms, especially now that he's exercising those areas. His muscle spasms are so bad that next wweek he is going to be tested for a medical procedure to put a pump into his abdomen that will slowly dispense anti-spasm medication to his spine, which will greatly increase his ability to breathe, sleep and function, if it works for him.

He'll be in the day program till about April 7th.

I took photos of Tom in the day program therapies -- I'll post some of them soon.

Michele