Monday, January 16, 2012

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.

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