A hard day, with help

This has been one heck of a hard day. We have seen immense kindness and support, and help beyond what we could have ever expected.

When they were doing rounds on Pat, we asked if Dr. Lewis-Newby could talk to us about questions we had about when, and under what conditions, should we consider withdrawing life support. Just after they took Pat out for his C/T scan (quite the complicated process) Dr. Lewis-Newby met with us and we discussed not only when that decision needs to be made, but quite a bit about Pat's condition. She told us that Pat was a very very sick boy, and as an ICU doctor she sees many sick babies. She thought he had only a very small chance of surviving in good enough shape to leave her ICU, much less what problems he would face having made it that far. She discussed with us what our options might be, and how disconnecting from the ECMO might work. Doctor Mithya Lewis-Newby was compassionate, understanding, calm, supportive, and had all the information at the ready. We were both very impressed and thankful she was there.

Pui and I returned to our room. We knew when we came here that there was a chance that Pat would not survive to leave the hospital. Pui told me that she thought Pat was here to say "Hi!" before moving on. We were all together in some previous life, and he wanted to stop by and brighten our lives a bit before getting on with it. It does seem to me that he's been telling us since Saturday that he's ready to go. First the crash after the surgery, then the Lactic Acid, then the cranial bleeding. It's like he agreed to give the surgery a chance, but thought it wasn't for him and has been trying to let us know since that he wants to move on.

So we decided that we would remove him from the ECMO machine, and let him die naturally in our arms.

We called Pui's family, and told them what we were thinking. Khun Mea (Khun Yaay to Nong Pat) said that he was only here for a brief visit. He had snuck out of heaven to see us, and was being called back. She said we should draw a mark on him, and wish that he would come back to us when we have another child. We also called some Thai friends here to try and figure out how to get in touch with a Thai Buddhist temple. Then we went down to stay with Pat while we could.

While we were there Dr. Lewis Newby and Dr. Cohen came in, to tell us the result of the latest C/T scan. It was not good news at all. There was another sizable bleed, and two new possible infarction areas. The swelling in his brain was also increasing, and they felt that it had not reached it's maximum. Dr. Cohen told us that he thought there was virtually no chance that Pat would not have severe brain damage if he somehow managed to survive. He said he thought all of the damage we were seeing was a result of the trauma of the crash, the CPR, and the ECMO installation, which was in turn ultimately caused by the leakage in his tricuspid valve causing his heart to work too hard.

We let them know of our decision to let him go. We decided tomorrow would be the day: that would give us and the hospital time to prepare. Us, mostly.

We also discovered that the hospital would allow us to do something they normally do not let parents do with their ECMO babies - we could hold Pat. We leaped at the chance. It turned out to be quite a process - ECMO babies are not easily moved. It took 5 people and 20 minutes of planning and checking, plus furniture re-arrangement. But they did it, and Pui held Pat for an hour and I held him almost as long. I didn't think I was going to get another chance to hold my boy again, but I did, thanks to the kind patience of the hospital staff.

Speaking of the staff, I have to say that we found one nurse particularly awesome. Her name is Ann Neymeyer, and she watched over Pat four 12-hour days in a row. She was diligent, matter-of-fact, calm, capable, knowledgeable, and unfailingly watched out for Pat's best interests. In the days she was there - the roughest of his short life - he could not have had a better caregiver. We - Pui and I, and Pat - think she is nothing short of miraculous. At the end of the day when she had to change out all of Pat's tubes, figure out how to get him to the C/T and back, plus two ultrasounds and a doctor's conference, she apologized to us for not giving us more time during the day. For a woman with only two arms, she sure as heck gets a lot done!

But Ann is not the only person who has really been fantastic. All the doctors and nurses have been great, and we have never doubted for an instant that there was nothing that could have been done that wasn't.

When Pui's friends heard that Pat was going to be leaving us soon, they came to the hospital. There the grandmother (Khun Yaay) told Pui that many years ago she lost a son at 18 days old. As is a belief in Thailand, she drew a small mark on the foot of her baby before he was cremated, to help her identify him if he was reborn and she met him. Many years later, her grandson was born with a mark right there. We plan to leave a small mark on Pat. Perhaps some day we'll see a little boy with a birthmark there - and we'll wonder, and feel both happy and sad.

I wish with all of my heart that things had worked out differently. I wish we could have taken Pat home with us and loved and held him like all parents do. But we did have these days with him, and they have made everything worthwhile. We will not mourn losing him - we knew that was the chance we were taking, and really, how sure is anyone of a long life? - but we instead will treasure the memory of every moment we spent with him.

Now it is very late, and we are completely wrung out. And tomorrow promises to be even harder.