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.

Thanksgiving (Hospital Stay Day 14)

Today is Thanksgiving and we spent it in the hospital. Annett's parents had to cancel their trip as there is really no reason for them to come while we are still in the hospital.
Dr. B is out for a couple of days and Jagger is doing OK, he is on a ton of meds and they seem to start helping a little. They reduce his Methadone dose and he was very agitated so he is back on 3 times a day. I don;t like for him to be on so much strong meds but if that is what it takes to control the pain, then we don't have a choice.
We still had a Thanksgiving mean and it was great. Thank you to the volunteer that set up the meal for all the family that are in the hospital, it was very good and all the Thanksgiving favorite were available.
Jagger eyesight is starting to slowly come back it seems, we got a few smiles today, so that is good news, even if he still has weird eyes movement.