So Frustating

One of the hardest thing about Mitochondrial diseases is how quickly things can go from good to bad to really bad with no warming, to me it is one of the most frustrating parts of his disease (along with the fact there is no cure of course).
Last Sunday, right before Superbowl I almost made a blog entry just to say that Jagger had a good week and he was very happy and smiley all week and things were as good as they are going to get right now!
But I did not have time, so I figure I will post Monday morning, and just like that, on Monday morning, he started his spasms again, the same thing that landed us in the hospital a few weeks ago.
So Annett called our hospice nurse right away, and we increased his medication doses immediately to make sure we keep it under control.
It seems that it worked, but the bad part is that we had to double some of his meds, and as you probably know from earlier entries in the blog, we cannot keep going up on the meds forever as the higher dose the more chance of respiratory failure.
The good news is that as of now, Friday evening, he has not had any spasms since Monday.
However, we can see that the disease is progressing slowly. He does less and less with his legs and has already lost a lot of muscle mass. His legs used to look like those of a soccer player, strong and defined with of all the kicking he used to do.  We still have PT for him once a week and try to do exercises each day but we are not sure how much that is actually helping.
He is also having a hard time sleeping at night and when he does fall asleep, he is very agitated in his sleep, so I am sure that it's not really restfull sleep he is getting.
Secretions have also been a big problem for him. We have suction machines at home that we use several times daily but it is becoming very difficult to control his secretions, so we talked to our nurse and we might have to try meds to see if that helps!
Tiffany (our nanny) babysat for us on Wednesday while Annett was at a self defense class and I was able to have a rare night out, I went to see the Pacers play with a few friends. It was fun even if they got beat pretty bad! But it was nice to get out for sure!
That is all for the weekly update!