What to do now? The decision a parent should never have to make

This is probably the hardest thing I ever had to write in my life (at least for now). I will try to hold my tears as I type this, but we have done so much crying already today that Annett and I are both mentally and physically exhausted already.
We knew for a few weeks now that Jagger condition is terminal, but we were secretely hoping for a miracle, but mostly for maybe a couple of more years with him.
Unfortunately, it seems that will not happen.
Because his pain his only getting worst, the doctors have to increase dosing or find new meds on a daily basis.
there are a lot of pain med option we can try (even if most are not recommended because he is so little) but some of them can be dangerous for him.
We had a good talk with Dr. K and for him and the ICU docs, there are little doubt that the pain is cause by his disease progressing, and affecting his brain. All the tests they got back so far are negative, which proof that theory.

So the only thing we can do at that point is to control the pain with medications, but if we give too much we can cause respiratory failure, and if we give too little they have no effect on his pain, so we have to find the correct balance, but because all those drugs are addictive by nature, Jagger is building up a tolerance very fast and they have to increase the dosing constantly.
So very soon, we are going to get to the point, that in order to reduce his pain, we will put him in danger of respiratory failure, and he will need to be intubated.
From experience from November, we know that is he is intubated the odds are he will never be able to breath without the machine and then we will be face with a "pull the plug" type of decision.
We have not made our final decision yet, but Annett and I lean toward trying to get him as comfortable as possible with meds and that way we might be able to possible take him home where he will be able to take his last breath peaceful with us.
So we had to call our family today and tell them they should come and say their goodbyes to Jagger, not the easiest phone call to make. Annett parents are driving down and should be there on Wednesday am, and my parents and one of my brother are flying and will be here Wednesday, but they can only stay for 4 days.
This is not going to be a fun week for any of us, but I m glad they are coming to see Jagger one last time.
I have no idea when I will have the strength to update this blog next, but I will try my best to keep everyone updated and this is the best place for updates, as I will not have time to email or text everyone.

Taking the tube out (Hospital stay Day 8, ICU day 5)

Jagger did good last night, nothing happen, which is good. This morning he had another blood transfusion.
Then the process of weaning off the sedation started so the doctors could take him off the ventilator.
As a parents this is real hard to watch, becuase as the sedation worn off, jagger was being more and more agitated and did not like that tube in his mouth. We had to try to keep him as calm as possible but it is not easy to do.
Finally the RT came over and took the tube off, the key was to keep him calm or it would get very upset and stop breathing again (he does that when he is very upset), so Annett took him in her arms right away and she was able to keep him calm enough that they did not have to put him back on the ventilator.
Jagger was of course exhausted so he took a little nap. When he woked up, he seemed pretty happy and even smiled at Annett for a few seconds, then took another nap.
Now, when he woke up from his second nap, he was a totally different child, he was very very agitated, did not recognize anyone and keep throwing his head back, and it was impossible to calm him.
The doctors started him a a couple of meds to see if he would help, but so far nothing seem to help at all.
Jagger is only taking short catnap but is not getting any restful sleep at all, I really wish they could find a drug that work SOON!

If you don't take this tube out I will ( Hospital Stay Day 6, ICU Day 3)

I was able to get some sleep in the sleep room last night, not great sleep like in a hotel or at home, but sleep never less.
Morning was pretty uneventful (which is good in the ICU), they talked about getting him off the ventilator but since we decided to have a port placed in him tomorrow (so we never have to look for an IV access ever again) they decided to keep him intubated until after the surgery. Annett went home in the afternoon, as I wanted to make sure she is there to received a package I had sent for her birthday. I ordered some Hawaiian flowers from the Big Island and they arrived this morning and were waiting on the front door for her.
While Annett was away and I was sitting in the room and I heard some strange "wind" like noise and I look up, Jagger was very agitated and all machines were beeping like crazy, so I went to the bed and saw the tube moving so I held it and the nurse came right away and told me he was just coughing, but unfortunately, he was more than coughing, while sedated on with hand restraints he somehow got the tube out of his mouth. So the nurse tool it out completely and gave him a little oxygen, but he was getting very agitated and he did like he did Monday, got very upset and stop breathing, so next thing I know, there are 10 people in our room and the Dr. Ka asked me to go wait in the waiting room, they are to re-intubate him as he was struggling to breath on his own.
Dr. Ka came get me abotu 30 minutes later and everything was back to "normal", Jagger was back on the ventilator and under heavy sedation.
Later, Dr. K (our Neuro) came by to discuss the result of the MRI, white matter was growing, which mean his brain was developing, however they found some "spot" in the basal ganglia which explained his movement disorder and the fact that Jagger does not control his hand/arm movement at all.
we will discuss the findings in more details tomorrow during our meeting.
The rest of the evening was pretty uneventful. Tonight, Annett will go to the sleep room and try to get rest.

Craziest Day Ever (Hospital stay day 4, ICU day 1)

Jagger did pretty well this weekend, and I was really pushing to go home yesterday but they wanted to keep him one more night to make sure he did OK with his feeds and was hydrated enough.
However, Jagger woke up this morning crying and has been in pain all day. Since he lost the IV they started in the ER on Friday, they had to try to put another IV in. Our nurse tried a couple of times and could not get it, so she call the flight team. They are the life support helicopter pilot and they do IV in the field in critical patients so they are very skill at it. Unfortunately, they could not get an IV going on Jagger either.
So Dr. S. (our GI Dr) decided to give him some morphine thru his G tube since he has been crying all day, but that did not calm him down at all. they also decided to stop Reglan ( his med for delay gastric emptying) since he was starting to show some side effects. to counter those, they gave him Benadryl and that put him to sleep for about 20 minutes.
I had to go home to make a few calls and posponed my business trip for this week, and things went donwhill fast while I was gone.
Jagger was still not calming down and getting very dehydrated so they really had to get an IV in him. they call the PICU team (that have a sonogram machine) but they were still struggling and could not get the IV going.
they did find a good vein in his neck and tried that, but it did not work. That however put Jagger over the top and he was so upset and exhausted from crying the entire day that he was having trouble breathing and went into respiratory failure. They had to intube it him right there in the room (no time to go to PICU).

When I got Annett texts I came right back to the hospital right away and never drove that fast my entire life (less than 10 minutes for a 20 minutes trip).
By time I got here he was intubated and ready for transport to the PICU and under heavy sedation.
It took a while to get everything set up in ICU but he was out of danger for now. They also decided to do a femoral central line so they will have a good IV access, since he was sedated he hopefully did not feel any pain at that point.
So now we standing here in the PICU looking at our son on a ventilator and he almost died, while the plan was to go home today.
It is crazy how life can take a turn for the worst so fast.
They are starting him on a lot of different meds and we will talk to the doctors in the morning to see the plan of action.