A walk in the park

There's a very nice park in front of the hospital with asphalt paths made on purpose for the wheelchairs. As today is finally a beautiful summer day with no rain, I decided to ask the nurse to put the portable oxygen on my husband's chair and I took him for a ride. We stopped under a tree for me to make his exercises (to keep him flexible) and I read a little bit. We both felt the wind and the sun and I guess this was good for both if us.

For the ones who care for the well being of my angel, I want to say that as long as there's a good sunny afternoon, I'll keep doing this.

Also I want to say that his lips are way better than the last time the friends all saw him. He is still recovering from biting his lips strongly and non-stop when he had that episode, but right now it's not swallen anymore and the normal color is back.

One of man's greatest assets

I'm still in awe trying to find the best words to describe what happened last week. Two of my husband's great friends had the idea of preparing a litte get-together and have a big group of friends to come visit him at the hospital. Many of them already came here before, but it's tough, given that we are in his hometown, almost 2 hours far from the city he was living for the past 25 years and where he met all of his best friends. I think they also wanted to "live" this together, at least for some hours.

So, they reserved a very nice party room at the hospital and I took care of the logistics to make my husband "portable". He doesn't use a ventilator, he breathes by himself, but he needs to have humidified oxygen being blown in his tracheostomy.

At noon he was ready and his friends started to arrive, with good food and drinks. I can count almost 20 of them and, still in lack of words, I can just say it was very nice and emotional. It's hard to talk about everybody's experience, cause each one was touched in a different way. As for me, I always thought that having good friends is one of the greatest treasures someone can have. And they showed a great deal of love and respect for my husband. These people won my heart! So, thank you for a great time!

I hope that somehow my husband was able to profit from this, he knows their faces and their voices for way too long and he loves all of them. They played all the weird music he loves too. All this information is printed in the left part of his brain (which was not affected). The right side, the one affected, is the one supposed to make the interpretation of what he sees and what he hears. But even so, one will never know, so I just hope he felt good, alive and not alone. In fact, this is something I say to him every day: "Baby, you are alive and you are not alone".

I'd like to ask if you were there, please, send a comment about your feelings on this afternoon, to enrich this post. Thanks!

When too much health is a problem

After this scary episode, I found out that the chances of a person at my husband's age and state of health (with no previous heart problems) having a cardiac arrest are minimal. Still it can happen.

While talking to his doctor here at the nursing care facility we are in, he said that my husband's health is incredible, that he is strong like an athlete, with very good heart and lung conditions, for example. Yes, it's true. His whole life he loved sports, always played and did very well. Besides, he always used a bike as means of transportation and had good eating habits, which kept him much younger than what his birth certificate indicates.

At first I kept the doctor's comments as a compliment. I was always very proud of him for keeping himself in shape and naturally conscious of things that people should normally do to take care of their longevity. But then my mind, as always playing games with me, started realizing that maybe, this time (since after the accident), being super healthy is actually torturing him, keeping him alive and strong, and I hate to say this, but maybe for nothing. His heart can beat at 195 for one whole day and he can still take it. His imune system seems prepared for any complication.

As much as I have hope, I am also not in denial, I know what's going on. So, I feel really bad that he prepared his whole life for longevity, and right now, longevity means to be alive, breathing, digesting, sleeping, but with no awareness of himself or the environment. With very few chances of ever waking up from this and even fewer chances of any recovery after waking up. With dependency on a huge amount of nurses to keep him comfortable, clean and fed.

GOOD GOD, IS THIS MESSED UP OR WHAT?????

ps.: by no means this is me advocating for people to stop taking care of themselves!

Vacation with a scary ending

This post has more "technical" information about my husband's health situation and daily life at the hospital. I'm using this blog also to inform friends and family about what goes on. But before I start my story, I need to give some background information so you can understand.

My husband has what the doctors call a central fever. The part of his brain responsible for controlling his temperature was affected by the bleeding and very often his temperature changes. He takes Tylenol 4 times a day to help a bit, but it's not enough. So every once a while, his temperature increases and that causes an increase on his spasms and the heart rate too.

Nothing scary until one week before I left on vacation (around mid June) he had a more serious episode of very high fever with lots of spasms and a fast heart rate. It seemed as if he just got back from running a marathon and it wouldn't slow down. I was with him and got very worried. So, the doctor followed up with urine and blood test to make sure it's not an infection that was causing this. And he confirmed, once again, this is just his central fever attacking. Next day he was ok, back to normal.

Since his situation is pretty much stable, I decided to go visit my friends in the city I used to live before getting married. The plan was to stay two weeks cause I had a lot of people that wanted to see me. They represent a big part of my support system and they are far away from my daily hospital life.

Everything was fine until two days before my trip back, when a doctor called to warn that my husband was having an episode of very high temperature, and this was causing a lot of spasms and his heart to beat very fast, up to 195 beats per minute. He was afraid that if that continued for a while, he could have a cardiac arrest and, in that case, he had to ask me if I wanted him to be treated or to let him die. They, of course, would assist with the pain with lots and lots of morphine. Of course I freaked out, cause I was not expecting this type of call so early in this process.

Like the previous time, he got better once the fever went away. But as I heard the description of how it happened, it seems to me that this episode was even worse. He bit the left lower part of his lips for a long time and now it's all swollen and almost black. They gave him morphine, muscle relaxing pills and Valium. Oh, yes, this one was a really bad one.

I cut my trip short and came back as soon as the airline companies let me. What bothers me the most about this is to think how uncomfortable he gets when these things happen and there's nothing I can do. And that these "more scary" episodes keep happening every time he has hight fever. I can only watch and wait, and that kills me.