I realized last night that it has been awhile since I have given any real update on Jeff's condition. I guess it is because we have settled into a routine and are just allowing time to either help him heal, or bring it to another conclusion.
Perhaps there are new people reading this who do not know where this journey has led us the last couple of months. For those of you who have been there from the beginning, you know what a challenge this has been.
I will just do an update from the last couple of months. In August, Jeff told me that he had been to the eye doctor because he had noticed he was having a hard time getting his pen to write on the line and his eyes were doing funny things.
The eye doctor was very concerned with what he found because he knew that something was causing a disturbance with the optic nerve on the left side of Jeff's brain. He ordered an MRI to further investigate the problem. Jeff was turned over to a neurologist when the MRI revealed what appeared to be a stroke that had caused the damage. The major affect was that Jeff lost the periphral vision on his right side. It didn't seem to be that big of a deal. The neurologist said there was a good chance it would heal.
For the next few weeks, Jeff continued to work and live his life pretty normally, although we decided it wasn't wise for him to drive after he had a small fender bender. He really didn't feel very good though and could tell that something was wrong. On September 15, he was having a pretty lousy day and pretty much just stayed in bed. Jeff has always been the kind of person that when he is sick, he does not want to be mothered, he just wants to be left alone. I usually try to honor that. When I went to bed that night about midnight, Jeff informed me that he had thought about having me take him to the hospital earlier becaue he couldn't feel anything on his right side.
I was pretty naive about what that might mean and asked him if he still thought he needed to go. He told me no, he was probably just fine. The next morning, I knew he was not fine and called my brother for some advice. As he and my father came over to give Jeff a blessing, I had the distinct impression that our lives were about to change forever. It's probably a good thing I didn't know how drastically life was going to change or I probably would have been been even more scared than I already was.
We took him to the hospital where they performed another MRI and told him that he had an extension of the first stroke and it had now affected another part of the brain which governed sensation and the awareness of time and space. What the doctor's didn't know was what had caused these strokes in the first place. Jeff had no risk factors for stroke at all, and it was very unusual, so other tests were ordered.
With the results of those tests, the neurologist informed us that he had not had any strokes at all, but by all indication he was suffering from some type of infection in the brain. This we were told was a good thing because it meant that the brain had not been deprived of oxygen and a full recovery was possible if the infection could be controlled. They just needed to find out what type of infection it was so they did a spinal tap.
This was the best possible news I thought we could get. A stroke meant permanent damage. I saw an infection as something that he could take some strong antibiotics and be well in 2 weeks. Oh, my how naive I was at the time.
We did not actually get any firm diagnosis for several days, but were sent to a rehab hospital with the purpose of helping him use the functions of his body and to teach me how to care for him until his body began to heal itself.
The day after we got to the rehab center we went to see the infectious disease doctor. Jeff had been to him when this first started and was assured that the problem with his eyes had nothing to do with the HIV. But now we were told that Jeff had what is called Progessive Multifocal Luekoencphalytis. It is an opportunistic disease caused by a virus that many people have in their bodies, but is not usually manifest unless the immune system has been gravely compromised. It is manifest by the body actually attacking the brain and causing leasions which inhibit the brain's ability to communicate with the body.
This was not good news because we were also told that this disease had no cure and is lethal unless the immune system can somehow kick in and do it's job. Reading about this disease on the internet was not pleasant for me and I knew we were facing some very big challenges.
We found out why it is called progressive. It was a very discouraging couple of weeks for Jeff because it seemd like everytime he would try to work with the therapists, he just lost ground. His eyesight was getting worse, he was feling less and less on his right side, and his brain processing seemed to be even worse than it was before.
He lost his eyesight, he lost any use of his right side. He can comprehend what we say, but he has a hard time communicating his own thoughts. As of now, he spends his time pretty much in a hospital bed trying to entertain himself.
It's hard to say what is really going on with him. There are no more tests to run. He has chosen not to take the anti-retro-viral meds which would supposedly boost his immune system and get the HIV under control. I honestly don't know whether or not his body has the ability to do it on its own, but there are indications that it is happening.
Some days he is very lucid and we have amazing conversations. It is usually me asking questions and him responding in a way that I know he understands me. There are only a few words he uses. He has acquired a new favorite word. I'm not sure why "NO" is the chosen word, but sometimes he will lay in bed for hours just saying "no" over and over and over again.
Other times, he is just bored and is trying to get my attention. He uses "NO" for that too. I have gotten into playing what we call the "no" game. That way I get the answer I want, although he will often change the rules of the game on me. He keeps me laughing.
A few weeks ago I wrote on my gratitude list that I was grateful my husband was continent and could use the toilet. Well, I guess I just have other things to be grateful for now, including wonderful children who are so willing to help me with their dad.
Other than the brain functioning, Jeff is extremely healthy. All his organs are in good shape, his body is digesting food well. He eats everything I give to him, and usually would eat more if it was offered. Sometimes it is like feeding a baby bird. He just keeps opening his mouth.
He has many challenges at this time, but oh, he is so delightful. I don't know if the disease will just continue to progessily worse until it does snuff out his life, or if all the energy work we have done will continue to work so that his body can heal itself.
Only time will tell.
As for me, I am just open to all possibilities, but I believe in this case, it will have to be up to Jeff to decide whether or not to live and get well or whether to just go ahead and die. I don't think he has made a firm decision one way or the other yet. I will support whatever decicion he makes and do my darndest to help him. Meanwhile we are finding joy in little things.
That is a miracle in and of itself. Jeff does not have to create the miracle, but he is such a conduit for others to receive miracles just by being in his presense.
So there is a little history. Perhaps someday I will write a more detailed accouunt of the whole journey, but I think this suffices for now. He continues to bring joy into our lives. We are being strengthened every day. There are challenges, but there is also love. We don't know what the future holds, but we are facing it with courage and faith.
Chris
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