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.:(

Off the Oxygen (Hospital Stay day 3, ICU day 2)

It is not about 3:30 pm, and we just took Jagger off the oxygen about 1 hour ago and he seems to be doing ok without it, which is great news.
The night was a lot better, and he actually got some sleep and we were able to only give him Morphine twice at 10 pm and 4 am.
They also added Valium to his drugs and that make the morphine works better.
Of course as we were told yesterday, each medication increase can create a problem and with all those news meds, his blood pressure was a little low so they gave him a couple extra IV fluid bolus. The problem is that with his heart condition we have to be careful and not over hydrate him or that could put too much strain on his heart.
So again we are walking a thin line between taking care of his meds and hurting his body because of the toxicity of the medications.

Palliative care team came by today and said they will work on a plan so we can take him home. We will be able to give him IV morphine at home as needed. They also asked us to inform the ICU doc of our wishes, and while we still have to discuss a bit but we don't think we will have him intubated, we would much rather be able to take him home and manage with meds so he can go peacefully with us in his home if we can.

His pain reacted well to the methadone increase, so everyone is a little more optimistic this morning, but we know that we cannot increase drugs forever and at one point his heart will stop working we just hope that it will be as far as possible in the future.
With Mitochondrial disease, things can go downhill very fast, so we need to be prepared  in case we need to decide how much meds we give him to stop his pain.
Annett parents are driving down from New York and should be here sometimes tomorrow, my parents and one of my brothers are flying in from France tomorrow. It will only be the second time they meet, the first was our wedding, I just wish it could have been for a more joyous occasion.