Tough Choices
Patrick has had a rough few days. Today was the first day his fevers did not reach 38.5 (101.3). They started him on a beta blocker to reduce his heart rate, which seems to have helped, but it can also lower his blood pressure, so they are keeping a close eye on him. He's actually getting less than the smallest dose and they are slowly increasing it. They are finishing the weaning of the nitric, and he should be off it tomorrow. The low spot in his left lung has gotten worse again, so he is still on vest therapy, but since he likes it, that's not really a hardship.
The real issue is long-term prognosis. Yesterday, as I was listening to the doctors during morning rounds, there was a discussion between the surgeon and the rounding cardiologist. The surgeon shared our previous conversation about the porcine valve conduit. The cardiologist said that given the severe dilation of Patrick's right ventricle, she wasn't convinced he could survive the surgery. The surgeon admitted that it would be a high-risk surgery, and that he was in no hurry to put Patrick back under the knife, but in terms of surgical intervention, that was about all that was left for him to do.
For me, this was the first time I realized that there was a real risk inherent in the surgery itself (outside of the risks surgery always has, of course). Somehow, in my mind, the risk was the potential for catastrophic failure of the conduit after surgery. Instead, I now know in my bones that he is not likely to make it to two and, quite honestly, my fingers are crossed that he will make it these two months to his first birthday.
We are still waiting to hear from the heart/lung surgeon, but, for me, I am reaching a very different place--palliative care. I want to find out what it would take to bring Patrick home and just care for him there for however long he has left. I want us to be a family of four and to make memories together before he is gone. Phil and I have started having this discussion, although we are nowhere near making a decision. We are going to meet with the palliative care physician next week about what all they can do to help us. But, after an experience I had with Mira today, I am more convinced this would be the right road. As we rode in the car away from the hospital for the evening, Mira said, "I want Patrick to come home. I want all four of us at home together." The fact that my three-year-old could articulate this need was impressive in and of itself. The fact that it was one of the main factors at the heart of my not really wanting to go the transplant route and for considering the palliative care option just made me feel more than ever that I really was tuned in to the needs of my family.
Please understand, palliative care doesn't mean giving up. It just means that we are going to do what we can for Patrick from home. He has spent more than half his life in the hospital and, with such a huge chunk of that being recently, I'm not sure he honestly even remembers home anymore. I want him to experience life without being poked and prodded all day. I want to be able to hold him on my chest while he sleeps. I want to sit on the floor together to play. I want Mira to have a chance to hold him and play with him like she used to. I want pictures--mental and physical--of my family, living, together.
I am under no illusions that this route would be easy. But, in truth, none of the options we have left will be easy. The real question is, if Patrick has, at best, 14 months left, how would I most like for him to spend it. It's a quality of life question. That is the crux of what we have to answer. We don't know, yet. We still have lots of information to receive to figure that out. But, here's what I do know. When I spoke with two of the cardiovascular surgery nurse clinicians today about this, they told me that we had always had a very clear picture of Patrick's condition and the long-term outlook. They told me that they wished they could tell me that I was painting too dark a picture, but they couldn't. They told me I was asking all the right questions and that I was making "great mother decisions," because I was really thinking about all of the variables--not just Patrick, or me, or Mira, or Phil, or my job, or Phil's job, or our marriage, or Patrick & Mira's relationship, but trying to balance all of the needs to come up with the right solution for us. It was reassuring and humbling, but also quite scary, to learn that I actually have a firm handle on how things are. At least I know that, whatever decision Phil and I ultimately reach, we have gone into it eyes wide open.
We have extremely tough choices ahead. I can tell you, without equivocation, that had you told me the end result of three rounds of IVF after Mira would be a child with CHD who would not live to see his second birthday, I would not have signed up. But, it's a perfect reminder of WHY we don't get to know ahead of time. I love Patrick. I am amazed at how strong he is; at how he can continue to smile in the face of adversity. I have seen the joy he brings to all of the staff in the hospital. He has brought so much love and joy into my life these last 10 months. For someone so small, he will leave a massive hole in my heart when he is gone. Had I known, I would have said no, and I would not have been challenged, and I would not have been heartbroken. But, I would have also missed out on the love and joy and blinding smiles he has given so freely. My job is to find a way to do the same for him in whatever time he has left.
