Resting at home

So it's been a couple of days since the last post.

We are home. We were discharged on Friday late afternoon. It took a while to work out all the details and to make sure we have all new meds and equipments needed at home.

Not sure if they will ever read this, but we wanted to say thank you to the PICU team, they were great as always. Special mention to nurse Carol and Karen and to Dr. P.

Jagger has been OK since we been home and has not suffer from any spasms since Thursday!  

He still has a lot of secretions that he can't eliminate on his own so he requires suction several times a day but Annett is getting really good at it.

One of the hospice nurse came by on Saturday to check on him and see if we have all that we need. She also called the medical supplies company to get more oxygen tanks and to come check on our concentrator as it did not seem to work.  They came by later that afternoon and we are all set with the oxygen now.

Saturday evening was pretty nice, we took turn holding Jagger and were able to all sit down and have a family dinner. First time since 2006 and our wedding we all eat together. We had Shabu Shabu and everyone loved it.

Annett parents left later that evening and they are driving back to New York today. They are planning on coming back in about 5 to 6 weeks, hopefully we don't need to have them back here as an emergency before then. 

Jagger had a good night and did not wake up until 10am this morning.

He got to spend a little more time with my parents and brother this morning and we left for the airport early afternoon.

Of course it was pretty sad goodbyes as this is probably the last time they get to see Jagger. We will try to get them back over here in a few months but again it is impossible to make any plan more than a couple days out with Jagger condition so we shall see.

So after I got back from the airport I got to spend all afternoon with my little cuddle body. We watched football for several hours ( well I watched and Jagger slept most of the time! lol). For the few moments he was awake today, we even got some really big smiles, which are awesome!

Family time (Hospital Stay Day 5, ICU day 4)

Today was a better day. Jagger only had one episode of spasms in the morning. It happened when I ran home very quick to pick up my parents and brother. 
Annett gave him Valium right away to see if maybe that would work better than morphine. 
And while it is hard to tell if it worked or not, he was better in about 45 minutes and the spasms were a little less violent so maybe the Valium is the way to go. 
We will see what happened next time. The less morphine we give him the better  as his tolerance is building up pretty fast. 
On the other hand, while we can give morphine every 2 hours or so, Valium can only be given every 5 hours at most and we cannot give it at same time of morphine due to risk of respiratory failure. 
Dr. K came by today and said we will still try to tweak meds as needed until we find a good regiment and we only have to use morphine for breakthrough or rescue.  We not quite there yet but we might be close. Once we figure that out, we will probably be able to go home as there is not much more they can do for us at the hospital. But they said as long they are not tight on bed, we can stay in ICU at our discretion.  We really don't want to go back to the regular floor as we can manage him and his pain about the same at home than on the regular floor. 
In ICU, we have great attention from his nurses and can get meds in less than 5 minutes if needed. On regular floor it can take up to 40 minutes to get the med needed and if he is
Having a spams episode we cannot wait that long for sure!
We did inform the doctors that we decided not to intubate Jagger if
He goes into respiratory failure. An amazingly hard decision to make that no one should ever be faced with but we are certain it is for the best and will guarantee him the least suffering possible. 
Dr K and the palliative care team are also working on a new medication plan we can follow at home. 
We new to have exact plan for "crisis" pain control for both his gtube and IV. We will also probably get a morphine pump. We already have so much equipment for him at home, that our place looks like a mini hospital and I might be able to open a neighborhood urgent care clinic! Lol

Between his two grandmas, Jagger was held and rocked most of the day. 
I know he loved it, because being held is one of his favorite thing for sure. 
Annett and her parents stayed a little longer tonight and I was able to go to a local burger joint with my parents and brother. It was a nice little break and was good to catch up with my family for sure. 
After I got back and everyone went home for the evening, Annett and I started to discuss bereavement options and such. Nothing we want to talk about but we also need to have a plan as we do not want to have to make last minute decision under pressure. 
How much I wish that our conversation tonight could have been one of a regular family and we that talked about our next vacation destination or which toy we would buy for him instead of where should his final resting place be and what type of ceremony we should have:(

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.:(