Don't be a Spaz

I remember this from way back in childhood, and we really didn't know what it was.

Muscle spacticity has turned out to be the most difficult part of the recovery process that Pete has dealt with. A little over 3 years ago, he had a pump implanted that would send a constant dose of a wonder drug called Baclofen into his spinal column. The purpose of the drug is to keep the lower body spaciticy in check. For the first pump got badly infected and he had it removed and a new one put in almost 2 years ago. Up until around October or November, things changed substantially.

Although he has LESS spacticity, the medication is just not working right or at least as they had been. This has caused a few falls (and I suspect a few more than he's told me about), a few times where he's ended up walking around curled up like an old woman and he is in way more pain than any of us like to see. All of this is affecting his mood and his general get up and go.

There are a couple of things they can/have done, including taking X-Rays to confirm the catheter is threaded properly into his spine (check) and injecting some dye into the pump to see if it's going through (check). What they are doing today is giving him a bolus dose of the baclofen and then retesting him to see how it is working. If he has a remarkable improvement in the toning, then there's something wrong with the pump and it has to be replaced. If he does not, then they have to figure out what's going on with Pete.

There is a very slim possibility he is resistent to the medication. The nurses have told me they have seen this only a handful of times in their years of dealing with baclofen. If that's the case, they have their ways of trying to jumpstart the system. He is obviously getting some baclofen, an immediate dropoff causes really severe withdrawal symptoms up to and including the ultimate symptom that shall not be discussed. But it is clearly not enough to do the job and it could be we're in the "as good as it gets" territory. The spacticity is not bad enough that he cannot function at all, but is bad enough that his funciton is way more limited than we had hoped, and substantially more limited than it was just a few months ago.

Time flies

3 years ago today, I received the phone call that changed my family forever.

A simple question from Pete's co worker still kind of hangs in the air, "Has Pete been taking is blood pressure medicine?" The answer was no, he had run out of the prescription but refilled it on Friday after seeing the doctor, "Why?". Pete was acting strange, she had called the safety guys and they were "in there" with him. For those of you new to this, Pete had a Middle Cerebral Vascular Accident. Yes, a stroke is an Accident. He had a blocked carotid artery likely brought on by high blood pressure and unchecked choloesterol.

Pete was 53 years old. Way too young to have such an event. Our Anna had just turned 2. Fortunately for us, a child of that age doesn't know anything other than what they experience. To her, it's just daddy and all of this is perfectly normal.

We are also very fortunate that we have had the support of family and friends. Family who took care of Anna so I could go sit with Pete, who cooked for me, and dropped everything to come to the hospital to be there for me. Friends who were of immense support to me on that awful day. I read over 1200 messages from that one day of my friends trying to figure out what they could do to help from their far flung hemispheres. Co-workers who dropped their own work to pick up the slack for me so I could be out for 3 plus weeks and I suppose I should also mention the boss who never said a word to me about that time off ("that" specific time off, let's not go crazy).

Pete's current condition is still very good. He uses a walking stick to get around all but every now and again. He has been siezure free for over a year (knock wood please) and handles his day to day life pretty much as he would have before. We look forward to the day he is able to get back to work. I know it will mean a lot to him.

But, I still feel compelled to point out that this stroke didn't need to happen. Something I have thought about for all this time, but don't want to offend anyone. As I said above, it is very likely that the clots were brought on by high blood pressure. Now, you know I'm no doctor (but I sure sound like one sometimes), but I can see cause and effect.

When Pete had uncontrolled hypertensionm even with medication, he was a heavy smoker. He hasn't smoked for 3 years now. His blood pressure is on the low end of normal. I doubt the stroke reduced his blood pressure. So, if you're a smoker, quit. There are no good excuses for not doing so and it's one of the simplest things you can do to improve your quality (and quantity) of life. I used to be someone who used to smoke, I've sort of become a reformed smoker (the worst kind).

Listen to your body. If something doesn't feel right, don't wait for it to go away. Tingling body parts are NOT normal. Feeling any kind of weakness is NOT normal. Having any kind of interruption (no matter how short) in your vision, speech, balance or general ability to control your body are not just not normal, but are those "call 911" things.

Listen to your doctor. They don't get paid more for telling you to eat right and exercise. Really, they don't. Actually, they will make more if they don't try to get you to be healthy. Think about it.

and Last, treasure your days. Treasure your friends, love your families and forgive your enemies. Go sit with a friend sitting at the hospital. Pray for people who are in trouble. Chip in a couple of bucks if you can afford it when there's a collection for someone, and take a meal to someone who just wants to eat and not think about where it's going to come from. Even if they don't say it, they will never forget you for it.

That's all.

As of May, 2011

I have a small, but very powerful update. Pete has been doing so well lately. Well enough that an empty wheelchair occupies a spot in our living room most of the time.

The leap really happened starting in January, around the time my parents asked friends and family to pray the Hail Mary every day for Pete. Must be something to all that. Thank you all for your prayers and well wishes.

God, who is very good, has answered all of those prayers.

Almost a whole year?

I have not updated this blog in nearly a year, primarily because we've just been plogging along making good progress, plateauing, retreating, then making progress. Basically it's been 3 steps forward, stand still, step back, then 3 steps forward. All of it trending upwards. Today is a very important day. Pete goes to work this morning as a volunteer at the Houston Humane Society. He will be socializing puppies rescued from puppy mills. He will also be working with cats to determine their abilities to socialize and integrate into people's homes. Pete loves animals, but is much more a dog person than a cat one, so I know he'll enjoy the yapping puppies over the pouncing kitties. I suspect he'll be wanting to bring a few of them home. The other thing that is important about today is that when he goes to his job, he'll leave his wheelchair at the house and will be using his walking stick for the 3 or 4 hours he's out. Take a minute to let that sink in, right? I'm so excited for him, I know he's been waiting and wanting to make this step for about as long as he can remember after he can remember anything. Hard work is paying off, and this is the last step towards him getting into what they call "competitive employment". Anna was excited too, she even kissed his unshaven face.

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.