Today was Patrick's 10-month birthday. As 10-month birthdays go, it was pretty good. He finally got extubated and is a much happier camper, although now he's back to trying to keep the cannula out of his nose. His x-ray wasn't great, and he's still "low" on the left side from the fluid and junk in his lungs, but we're using percussive therapy and suction and, so far, he's doing well. They are concerned that it may be caused by his dilated heart pressing on his lungs, but his sats and everything are looking good.  He's still got lots of tubes and wires and hoses and IVs, but I was finally able to hold him today, so that was healing for both of us.

They have been slowly weaning him off the morphine and stopped the sedative. They put him back on the dopamine today, now that he has been without a fever for more than 24 hours, and it didn't elevate his heart rate (130s to 150s today), so they are going to leave him on it. His respiratory culture came back slightly positive for something that could just be normal flora given how long he has been in the hospital, but they changed the antibiotics to treat it just in case and, on the plus side, these antibiotics are much gentler on his stomach. They started his feeds back up, but at a minimal level (5ccs per hour) since his stomach is still pretty distended. They are going to begin TPN, which is an IV nutrition of some type to make sure he gets nutrition and not just fluids (they don't want him backsliding since they just got him gaining weight appropriately), and they will reassess his stomach in the morning.

Developmentally, he's still very behind--but wouldn't we all be if we were stuck in a bed with our arms restrained. Still, seeing the picture of my daughter at 10 months after her heart cath really brought home the differences in their development and how far behind Patrick is.  I talked with one of the nurse clinicians today and she said there are kids who spend the first two years of their life in he hospital who are able to get back on track developmentally, so I am less worried about it now.  

I also asked the nurse clinician about what goes into the calculus of the decision we are making and about some concerns I had. She said that we were asking all the right questions and considering all of the right things.  I told her that the hardest part for me is that I feel as though my choices are: he might die; and he might die. I think the biggest help for me is that I literally cannot make an educated decision at this point because I don't have the opinion of the heart/lung specialist. In addition, there's a chance Patrick could make this decision for us--whether by getting better or getting worse.  

Ultimately, though, Phil and I agreed that the choice we are making is what will provide Patrick the best life. We also agreed that, for us, the best life for him requires that we not destroy our family unit for the sake of any particular treatment option. I can't speak for Phil, but I do not accept the "life at any cost" theory of medicine. For me, there comes a point at which interventions are painful and unnecessary and it is better to do palliative care.  In my life calculus, quality of life is more important.  The difficult part is making those decisions on behalf of someone who cannot say "when." And, hopefully, we won't have to.  But, at least for me, I have to think it through so that I am prepared in the event it does occur.  It's not that I really want to think about all of these things so much as it's that I would rather think about them now, when life is calm and he's relatively stable, than have to think about them for the first time when we are in the midst of a personal and emotional emergency.

In that respect, it was a crazy day here. When we left for lunch, there was a room filled with doctors and the nurses were moving just short of a run. When we came back, a second room was receiving the same type of treatment. In fact, they had delayed Patrick's extubation because they were concerned that they did not have enough available support staff in case he had to be re-intubated (which, fortunately for everyone, he didn't). Then, when I came back after my nap, a third room was "receiving extra care." It was scary and sobering.  I have no idea whether any of these children made it today, but I said a prayer for all of those families because "there, but for the grace of God, go I."  It's one of those moments that makes me feel horrible and grateful at the same time--horrible for the family in crisis; grateful that it is not my child; horrible because I feel grateful.

In any event, today was finally the good day all of us really needed. It's hard to believe that we are a mere two months away from Patrick turning 1! This has been, and continues to be, the hardest thing I have ever done. It has made me both tougher and more compassionate. Emotionally, I am more heavily armored and more easily injured. I live within a world of grey, filled with hope and fear around every corner. Nothing is easy; nothing is simple. But I look at Patrick's smile, and it transforms me into wonder woman; I become the mommy I need to be. After all, If he can go through all of this and find a way to smile, the very least I can do is stay here in the thick of it with him, loving him through it.

Happy 10 months, Jellybean!! You've come a long way, baby!