The last five years have been a real trial on Phil's and my marriage. We've had lots of big decisions to make, none of which has been easy, but have still managed to stay connected as a couple and as a family. Our ability to communicate our wants and needs to one another has always served us well--whether issues of employment, fertility, child rearing, or medical issues. These skills served us well over the weekend and today as we made decisions about Patrick's care.

In talking with relatives this weekend, we realized that we needed to start planning what we wanted for Patrick's funeral--whenever it is. We were extremely fortunate, as we discovered we both wanted most of the same things. There are still some details we haven't decided about, but I was pleasantly surprised at how much we agreed on after very little conversation.

We had another big conversation today, as we met with the physician in charge of the palliative care program. We had a great conversation about where we are and what we want, for ourselves, for Patrick, and for the family. She talked about what they could help us with and how they could support us, no matter what choice we made.

I told her that I had no problem with palliative care generally, but that I was struggling because I couldn't ask Patrick what he wanted, and I was bound to superimpose some of my wishes on him.  The physician indicated that lots of parents in this situation wish they could ask their children what they want. She reminded us that kids live in the moment and that, if you asked them if they wanted to come home for a day even if it meant they wouldn't come back, they would pick going home for the day. She also said that most people want the same things when they pass--they don't want to feel alone, they want to feel loved and comfortable, and most don't want pain. She advised that, with heart failure, it's fairly easy to treat symptoms and make kids comfortable, making it one of the "easier" things to treat with palliative care. She also noted that we haven't had much control over Patrick's life, but that bringing him home to cuddle would give us some control over his death.  In a way, we could give him the gift of having a comfortable death--something most of us don't have the chance to choose.

As we talked about whether I could live in a house where he had passed away, the physician asked whether I could live with him dying in the hospital. I realized that Patrick dying on the operating table was more problematic for me than him dying at home, snuggled and loved. Having him pass at home would also allow Mira to see Patrick being cared for. For most kids, their imagination runs wild and they fill in all the gaps about what happened at the hospital. With Patrick at home, being cared for by us, she could play with him, see us caring for him, and not associate the hospital with him going away. Plus, since she has mentioned wanting him home every day for three days now, we think she'd be happy to have him back.

After our meeting, Phil and I went to lunch to digest both food and information. During our discussion, I said that I was ready to bring him home. There was a time I had wanted to push the transplant issue, but looking at everything we know now, I don't want that for him or for us. I want him to come home, play with Mira, and make family memories that aren't filled with doctor visits and the hospital.  Choosing this route would allow us to remain a family and grieve together, supporting each other through the process.  I want to take Patrick a few places before his time is up. The physician couldn't give us any idea of how long Patrick would last, and she noted that kids tend to last longer than adults, but also noted that his main problems are with his heart and lungs. She speculated that I probably wouldn't need to take off more than a month from work, so we would have to plan to do things soon after he got home. I could use FMLA to take time off and not have to worry about work, allowing me to spend all of my time with my kids (and Phil). I'm not under any illusions that this will be easy, but for me, it feels like the thing that will give all of us the thing we want the most--quality time together.  

After talking and thinking as long as we needed, Phil reached the same conclusion I had--it's time to bring Patrick home. We don't see this as giving up, but giving Patrick the best quality of life we can. We are ever so grateful to the team of people who have cared for Patrick at the hospital. They made possible all the joy we've already experienced.  But now it's time to be selfish and bring him home. The physician said that all most people want from life is to love and feel loved. So, that's our plan--to get Patrick home and love him as best we can.

As always, we are so grateful for everyone's support. We would just like to ask for continued support and prayers as we make this transition to living in the moment and preparing for the grief to come.