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!

Uncontrollable Spasms (Hospital stay day 4, ICU day 3)

It s crazy how fast things can change with Mitochondrial diseases just a few hours after taking him off the oxygen and even getting a few smiles ( which was awesome and a sight I will never forget especially if those were the last smiles we ever get), while Annett went home to get us fresh clothes and supplies, Jagger started to have very strong violent spasms. He had a few spasms before but just for a few minutes and usually controllable with a small dose of morphine.

That episode yesterday lasted about 1 hour and we could not stop it with morphine and Valium. Even our nurse was shock by the strength of the spams.

The rest of the evening and the night were pretty quiet and Jagger got some good sleep.

Around 7.30, he woke up screaming hysterically and had another episode of violent spams. Doctors were able to witness it but nobody can tell for sure if it is muscle related or just neurological as his brain is slowly getting worst. So they have meds for both and he had 2 doses of morphine and an increase dose of Valium. Unfortunately none of it worked and the spasms went on for a little over 2.5 hours. I must say that has to be one of the hardest thing to see as a parent because he was in so much pain and nothing we could do calmed him down. I still believe none of the meds worked and he only stopped after over 2 hours because he was exhausted and fall asleep.

Dr K stopped by and said all we can do is to try to control the pain so they will increase his dose of morphine again and hopefully we can put a stop to those spasms.

He reminded us we need to decide about intubation or not if it is needed.

We think we made a decision on that matter but we will also discuss with our parents since everyone will be here tonight.

We were also really hoping to be able to take him home and manage all with pain meds but we are starting to rethink that, those spams episodes are so violent and scary we decided we want to stay in ICU until we get those under control for sure.

Annett parents made it here safely and I went to pick up my parents and one of my brothers at the airport.

Right before we made it back to the hospital, Jagger started to have another one of his spasms episode, this one was a little less violent and shorter, and maybe the morphine help that time, but we really need to talk with his care team tomorrow to see if we can do anything to stop those from even happening.

it's about 11 pm now and he is sleeping peaceful, hopefully he will for the rest of the night, and will not have any more spasms.

Here is a pic i took yesterday when he was smiling at us for a few minutes:

I took this short video to show one of his doctors that was not around this morning when he started his episode.
Now I warn you this is very difficult to watch, and I was only able to get the tail end of one of the spasms, he had them from over 2.5 hours this morning. In between each one you can see how he is breathing thru his stomach, which he only does when he is in a lot of pain.:(