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:(