UPDATE--May 24

Hi Everyone,
It's been way too long since I last posted. I know I owe everyone an update, so here goes.....

For the most part, we are doing very well. I say "we" because so many of you have been concerned for me as the caretaker. It is hard on me, but many things have gotten much more tolerable than when we first came home.

Many Answers To Prayer...
Tom had a very hard time recovering from that surgery in April to put in the Baclofen Pump. Now that he is totally recovered from that, we can say that he is feeling much better. The pump is doing what it is supposed to do, which is to keep the muscles from stiffening and suddenly spasming (jerking). This has been a great relief to Tom, and I find it much easier to dress him as his legs no longer stiffen and "fight" against me while I'm trying to get his pants on. It has definitely been an answer to prayer.

Another answer to the prayers of many of you is that we are getting more hours of uninterrupted sleep per night. We sleep about 4 or 5 hours, then wake up and I get up and reposition him (so he won't get bed sores), and we go back to sleep for another 2 or so hours. I threw out all the sleeping pills which made him wacko and groggy during the day, and he now occasionally takes an herb to help him sleep if he needs it. We definitely appreciate your prayers for our sleeping needs. OH, and some friends found me a hospital bed, so I now no longer sleep on the couch! It was only $50 and is a very nice adjustable bed that I can keep next to Tom's at night, but then roll away while I dress him, etc.

We are now driving a handicapped van equipped with a lift that makes it fairly easy for Tom to get into and out of, so we are much more mobile than we had been. A handicapped lawyer acquaintance of mine, who is now a very good friend of ours, has lent us this van. (He has another one--this is his older spare van). It has hand controls so if Tom wanted to, he could try to learn to drive it .... maybe later in his recovery..... It's a bit weird for me to drive, but I manage, and I've not had any accidents in it!! We are very grateful to this man for letting us use this van.

Using the van with the lift means that I no longer have to put together and take apart and haul around that portable lift, which weighs a ton. My back is thrilled with that.

His breathing is still shallow and it is labored for him to talk a whole lot. One reason that we don't call too many people. sorry.... But he's not had any respiratory ailments like he usually does every spring, so another praise!

Also his bedsore is completely healed, no more have occurred. He seems to have good skin.
We've got a system to handle his bowels that seems to be working, and that has relieved some of our stress. No accidents.



What We Do All Day...
This is a busy time of year for my business. Weddings, showers, graduation parties, end of year luncheons, teas.....all those events are going on in May. Fortunately, my business has picked up to the point that there are events every week-end, and most week-ends in May there have been 3 or 4 events. This has kept me hoppin'. Tom rides over to Southern Oaks with me pretty much every day and hangs around while I set up or clean up for events, plant and water flowers, or even while I conduct parties. He's now learning what I actually DO all day, so this is a good thing! We spent 3 days delivering day camp flyers to all the schools in the county. I do this every year but I never have company. Needless to say, we are spending a whole lot of time together! He is very patient and takes it all in stride.

Another praise is that he is able to use the eraser end of pencils that we tuck into a velcro band around his hands to operate the computer. It's slow, but he wasn't a fast typist anyway ;-)
This means he can read the newspaper online, etc. He is also able to enter my business receipts and stuff onto Quickbooks to help do my books.....which I NEVER do till tax time. I'm giving him the job permanently... It's slow, but it's faster than me because I don't do it.... We have an older laptop but will possibly be getting a nicer one from Jessica, and we'll be able to install the voice activated software onto that, and Tom will be able to do lots more on the computer. Hopefully, sell stuff on ebay for starters....

Daycamp will start in a few weeks, and Tom will accompany me there every day. I'm hoping that we can get some kind of exercise program for him in place by then, because he really should be doing excercises and physical therapy.



Help
I hire a young lady to come help get Tom bathed, dressed, in his chair, etc. on Saturday mornings when I've got to rush out of the house to do my events. That has worked well and lightened my load. I would love to have more help, but can't afford it right now, and insurance will not pay for it.

Several teen-age girls come by occasionally to our house to help with laundry, dishes, etc, and also to Southern Oaks.

We've talked to an Orthotic company that is looking into fitting Tom's hands with these metal brace things that will help him be able to use his hands. Will let you know how that goes.

Finances
I don't know how, but so far we've been able to pay our bills in spite of not having any income since February. We're basically living off of what people (you) have sent us. That's about gone, but now that daycamp money and event money is coming in to Southern Oaks, I will be able to pay for some of our home expenses. Needless to say, we don't spend money on anything that is not absolutely necessary.

I've applied for Disability, and we should hear something about that soon. We should qualify in June, and start receiving disability checks in July. Don't know how much that'll be, but it's some percentage of his former income.

We're on Cobra insurance plan, so we have to keep up with that payment in addition to having to pay fairly large co-payments for drugs and doctor visits that we never used to have, so that'll probably use up a lot of whatever disability money we get. Not worried about it though.....the Lord has provided for us so far and he will continue to.

Our church has given us some money to help pay for the insurance on the borrowed van, which will cost us about $1000.

Status of Lawsuit
Our lawyer has said that they are asking us if we are willing to settle. We are in discussions about this and so I won't say much, except that the kind of "settlement" that our lawyer would accept on our behalf, I believe, would include a Life Care Plan for Tom that would provide for much of his future care needs to be provided for. We appreciate your prayers for this to be settled in a beneficial way for Tom. And that it won't drag out for years......

Health Concerns
Tom's #1 health complaint now is the tightness in his chest that is like a band squeezing him. He has had this all along, and he's taking medication that helps make it tolerable, but it would be nice if it would go away. It is a constant annoying thing to him and makes every breath labored.

He also is having a lot of pain in his shoulder, which is the same shoulder that bothered him for years prior to the accident.

So we now are trying to settle into a routine, and working on getting Tom stronger. He really needs to be exercising his arms more and learning how to do more things for himself. we're working on it....


THANKS once again to all of you who have commented here and sent emails and cards and phonecalls and prayers and money. You have all helped us get through this.

I'll post again when we have any significant updates to tell you about.

God bless all who read this!!

Michele

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

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

Update for end of Feb.

It's getting near time for Tom to be released from Shepherd. We are feeling overwhelmed by all the decisions that need to be made.

First, Tom is still experiencing muscle spasms, which are worsening all the time. The muscle spasms are like being hit in the stomach and the body jerks to the right or left. Or his legs jerk from only a slight stimulus like touching them when we dress him. The worst part of it to him is that many times at night, his chest feels like there's a band around it that's tightening during the night and it's very hard for him to breathe.

Muscle spasms are a usual part of a spinal cord injury. They can be much worse than what Tom is experiencing. His are very annoying and keep him from getting sleep--especially the tightening of the chest at night.

His doctor has put him on anti-spasm medication, and has been increasing the dosage to the max that a person can take. A side effect of this is that he becomes very groggy during the day. He also keeps having his sleep interrupted by itching that he can't reach to scratch, so that's another annoyance that's kept him awake at night. Today he was zombie-like, and every chance he got to be still, he fell asleep. I think the doctor is changing his medication for the spasms, and hopefully it will help him and he won't have adverse reactions to it. (we already have had rash from another new med) The lack of good sleep is really a hindrance to his healing, I believe.
He also has a hard time breathing from his nose being congested occasionally, and since he cant' blow his nose very well himself, he has to breathe thru his mouth and then his mouth gets dry and he can't get a drink. It's all kind of misery. But today I bought a thermos-type water bottle that's flat and has a drinking tube attached....I'm going to hook it to the side of the bed onto one of the sip-and-puff extension things that can reach to his mouth, and he'll be able to get a drink himself at night. I found this in their drugstore here and it is exactly what I was wanting to invent or find for him. Hopefully that will help a bit with the problems at night.

We've still got all these little health concerns to deal with, plus more that I'm not mentioning. And because it's almost time to get released, we're having to figure out transportation for him, as well as many other things that have to be figured out. I probably sound frustrated and tired, and I kind of am. There are so many things that need to be done that I am having a hard time keeping up.

We have a wheelchair-bound friend who has a handicap-accessible van that he's willing to let us use for awhile. We are not sure if Tom's wheelchair will work with the type of lift it has and the locks for the wheelchair, but we are working on it.

We are supposed to go to the "day program" after he is released. For that, he will go to the Shepherd Center five days a week from 9 - 4 and have intensive therapy. We stay in apartments nearby. I have to stay here with him the whole time and learn stuff too. We even sleep in these apartments every night. I have to be here in case he has an "accident" and needs his clothes changed, because he's no longer under nurses care. And I have to help him with his lunch at the center, and cook breakfast and dinner (or buy prepared meals). I also have classes that I have to take to learn stuff about his therapy.
I'm willing to do this, of course, because it will help him greatly to learn life skills that he needs. I'm concerned that I will be away from my business for another whole month, and Jan and Feb were really slow income-wise. I will be calling on friends to go work at Southern Oaks for me during March. We're not even sure if it will be a whole month....that depends on what the therapists say after the first week.

Well, I suppose I'm sounding a little overwhelmed, but it's because there's a lot to do on many fronts.

Oh, and also Tom's employer had to make the difficult decision to let him go...so we're unemployed. We're hoping he will still be able to go back and work for them in the future, once he gets stronger and learns more life skills.

Jessica was just here for a few days from DC. She cheered up her dad and helped her mom. We are missing her already.

all for now....

A Distinguished Visitor

Tom had a visit from an Atlanta television and radio celebrity a few weeks ago. Clark Howard came with his two daughters to see Tom. Clark has a consumer affairs radio program here in Atlanta that broadcasts all over the country, and he's also the consumer advocate for WSB TV in Atlanta. We know Clark from his work with sponsoring houses for Habitat for Humanity. Tom has worked on Clark Howard houses for many years as a volunteer. (I've worked on a few of them too, as a paint supervisor).

So, Tom was totally surprised when Clark and his two girls showed up to see him on a Sunday morning. His 6-year old daughter was totally engrossed in operating the lift, which we let her operate to lift Tom from the bed to his wheelchair. She definitely got a kick out of that!

Clark brought Tom a few t-shirts from his current Habitat build project, plus several from last year's. He autographed two of them for us also. We gave him a tour of the Shepherd Center and had a really nice visit. Any of you who know Clark personally know what a great guy he is. Really cheered Tom up.

Here are a few photos--Clark's daughter with the lift control in her hand and Tom in the sling; and a group photo of Clark, Tom, and Clark's daughters.

Clark's website is: www.ClarkHoward.com

Flower Show Photos

I posted these already but guess it didn't work....
Here is Tom at the Shepherd Center booth with the handicap mower, and Tom and me together.
The mower has hand controls.

Update -Feb. 14

Well, last week I got the flu, had the brakes on my car replaced, and had our old Honda Accord repaired after it broke down while Joanna was driving it to work. An eventful week.... Thanks to Abbe, from the Fox Theatre, who comes to sit with Tom and help him with his dinner when I can't be here. And thanks to Don, and Pat, and Lisa, and Rita, and Ursula, and Tom S. and the gang from Southface and so many of you who come on a regular basis to visit Tom. I was worried last Wed. when I was too sick to come to the hospital (the first day since Dec. 16 that I haven't been here) and when I called Tom around dinner time to check on him, he had about 4 people in his room having a great time. I was able to get some needed rest....

On Saturday, a group of friends from Habitat came to start work on our house to widen a few doorways and such in anticipation of Tom's arrival. He's supposed to come home on Feb. 28, which is 2 weeks from now. Thanks to Don and Tom and Tommy and especially Robert, who jumped right in and did the majority of the "heavy hitting." They replaced the door into the garage with a new one, widened a doorway between kitchen and dining room, and started building a ramp. Work will continue again this Saturday. I've got to clean up a bunch of junk in the garage to prepare for the ramp to fit.

Tom had a minor surgical procedure today and has been having temperature changes all day....fever, then normal, then fever again. It's very hard to keep his temperature regulated on a normal day, but today has been worse.

It's good to be here at Shepherd where we can meet other patients with similar injuries. Some better off than Tom and some worse. Today we ran into Mr. Carder who used to be our daughters' middle school vice-principal. His accident was in October so he's now in the day program. When I first saw him here, he was worse off than Tom. Now he has movement in his fingers and legs. That is encouraging on the one hand, but on the other hand, Tom has had no improvement in the amount of feeling or movement ability whatsoever since the accident. His injury is called "complete" which means it's much less likely that he will get movement back, which can be discouraging. But we have faith that our prayers and yours will be answered and we know that God does perform miracles and healings.

Flower Show
We took a trip last week to the big flower show that comes to Atlanta each year. I have always wanted to go. It was beautiful! Tom enjoyed the wide walkways where it was easy to get around in the wheelchair. He loved the Bonzai display, which was amazing. All the garden exhibits were amazing.... I took his picture at the Shepherd Center exhibit, which had a handicap-accessible riding lawnmower on display. I would definitely love for Tom to have one of those!

I'll post photos from the Flower Show.

Michele