"And in the end.."

Today we cremated little Patrick. We had a beautiful little ceremony in a utilitarian crematorium with almost everyone who was at the service on Thursday present, plus Pui's sister, just arrived from Thailand. Three monks were there, and chanted a traditional ceremony. After the monks had finished chanting, everyone sprinkled the comforter and blanket Pat was in with Chrysanthemum petals. The blanket he was in was one he had been on several times in his short life, and had little animals and vehicles, and had text reading "On an adventure" and "Going home!"

The things you remember.

It was a nice way to say goodbye to our son. We are saddened to be parted from him, especially so soon, but partings are always sad. We will be sad for awhile, I'm sure. But we intend to remember his time with us joyfully - he has taught us so much about ourselves, our relationship with each other, and our relationships with our family and friends (so many friends!). He showed us what we value, and just how important love is. He brought a fullness to our hearts, and while our hearts ache with his departure they are no less full. If the Beatles were right ("And in the end the love you take is equal to the love you make") then Pat will take love all out of proportion with the length of his stay.

Tomorrow we will have a memorial service to celebrate Pat's time among us, and acknowledge that we miss him. Pui and I fully expect it to be both difficult and fulfilling. We hope that the cremation today and the memorial service tomorrow will be enough of a closure for us, so we can begin to figure out what the future might hold in store for us next.

We say goodbye, and go on with our lives, but Pat will always be in our hearts. We will cherish the lessons we have learned from him as much as we will cherish the memory of every moment we had with him.

Farewell.

Video of Pat

This video was taken the night before his surgery - the last time we were really able to interact with him, and the first time we saw his eyes since his first day. It can be seen on Youtube also.

Farewell, little Pat.

Patrick Praj Mullarky died today around 1:15 PM, in his parent's arms. He was 13 days old. He was loved deeply in his short time among us.

Shortly before Pat was conceived, his aunt had a dream that her recently deceased father, (Pat's grandfather - Khun Tar) was walking down a beach holding hands with a little boy. It's a thought I've liked since I first heard it: Khun Tar sent him to us. When we return to Thailand, we will scatter his ashes along the same beach Khun Tar's ashes were scattered. So Pat can go back to Khun Tar, and can tell him of his adventures here with us.

We had so many people help us out today. The hospital was incredibly kind and generous. They offered to help us collect various keepsakes, since in his short time we didn't have a chance to get any. They helped us collect a lock of hair, get hand and foot prints on some cards and ornaments, and made some casts of his hands and feet.

His skin was a mottled red and white. When I asked the nurse about it, she said you see it on people who have raging infections, or have some neurological problems or damage effecting control of the capillaries. Poor Pat. He was so mottled and looked very tired. We decided to proceed with no further delays, so Pat could be free to go onto his next adventure.

Then the nurses started to remove his IVs and washed him up. We helped with his hair. Finally, all he had left was his neck IV with his morphine, chest tubes (clamped and cut short) ,and the ECMO connectors to his heart. In the room we had my mother, father, sister, and Tammy.

They picked him up off the table, and put him in our laps. We were in a small love seat they had brought in last night, with pillows on our laps. We held him for about 15 minutes, telling him how much we loved him, how glad we were to have had him in our lives, and not to be afraid.

Then we told the nurse to turn off the ECMO machine. He died peacefully shortly thereafter.

Everyone had a chance to say goodbye in his last minutes. We held him for some time after he died - it was hard to let him go, even though he was already gone. The nurses put him back on the table, and began washing him up. I took a sharpie out and drew a small heart-shaped mark on the inside of his left heel - an identifying mark so that if he is reborn we can identify him. Then the nurses called in a surgeon to close him up: remove the ECMO cannula and chest tubes, and close his chest. We didn't stay in the room for that part.

When I was going back to the room to dress Pat for his trip to the Funeral Home, I ran into Dr. Cohen. He gave me his condolences, and told me that we should in no way blame ourselves. Heart defects are not caused by anything known - they seem to be a random occurrence across all populations. He said that worry that this would happen again should not stop us from having more children. I was very grateful to hear this - it was something that was tickling at my mind. I thanked him for everything he had done, and let him know that I considered the care he got to be probably the best in the world.

Back in his room, Pat's color had returned to what it was when he was first born, and he looked more peaceful than he had for days. He was clean, and his chest had been closed. Except for bandages on his chest, you almost couldn't tell what a trial his poor body had been through. We dressed him in a puppy-dog jumper his grandmother had bought him, with a matching hat. It was very cute.

We didn't know what to expect in bringing Pat to the funeral home, but I didn't expect to carry him on my shoulder like he was asleep for over an hour. I offered Pui a chance to carry him, but she said she had carried him for 9 months, it was my turn to carry him awhile. It was very bittersweet. I got to carry and cuddle my baby boy ... but he was dead. It was so hard to think of him as not alive. He felt like my sweet little son in my arms. And in a way he was.

Pui's friends - Muek and Mew - were amazingly helpful all along. They contacted a Monk, and got him to meet us at the funeral home just a few hours later. The ceremony was small, but beautiful. Muek and Mew, their son and Khun Yai were there, as was Peter Luton, My sister Katy and her husband Rick, Tammy, my niece Ysabel and nephew Rob, and my parents.

Pat was swaddled in a blanket and comforter, in a large wicker flower basket set on a central table, with the small Buddha locket Elle gave him. That was where I last saw my son, as we left after the ceremony. He will be kept safe at the funeral home until Saturday, when we will meet the Monk at the crematorium to cremate Pat.

Once home, I found the video camera and managed to transfer all our video of Pat - all 25 minutes of it - to the computer. We watched them through. In the next few days I'll try to make a small mpeg or three of the best moments. I also have probably a thousand pictures of Pat's time with us - I plan to make a few Flickr sets of the best ones.

And now what I hope is the hardest day of my life draws to a close. If you have children, hold them dear while you have them. They are not ours to keep, but the memories we have of our time with them is.

We will have a memorial service for Pat on Sunday, that will be open to all. It will be 3:00 PM at Eastshore Unitarian Church, in Bellevue WA. Everyone is welcome. Please, no flowers or gifts - make donations to Children's Hospital instead.

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.

Tough days. 1 week 5 days old.

Another day, another drama. This morning we slept in until about 8:30, and when we went down it was to see that the oxygen exchanger - his ECMO lung - was leaking. A yellowish foam was coming out of the base of the exchanger at a leisurely rate. Apparently, this happens when the filters get old. So they changed it out for one that is typically used for adults - a square box that does the same thing. They didn't use that earlier because it is harder to wean Pat off of the larger one - the larger size makes fine control more difficult, or something. Neither Pui nor I missed the implication that they expect he will be on ECMO for some time.

In some ways, the leak was good - his swelling has gone down dramatically, so he looks more like he did before surgery. Previously, his ears were being squenched together as the skin around them swelled. Now his ears stand out from his head and are fanned out like they should be. I never thought I'd be so happy to see ears.

In most ways, Pat appears to be remaining stable. His chemistries are consistent, his lactic acid levels are hovering around 7 (a high level, but at least it isn't jumping up off-scale), and his electrolytes etc. all appear to be good.

The main worry now is his neurological health. He's been off that paralytic medicine for a day now, but still hasn't moved. They suspect he isn't clearing it, so they aren't very concerned about that yet. They have reduced his morphine as well, because it can block neurological responses also. They are also worried that his pupils aren't responding to light, and they have contacted the Neurological team and scheduled another C/T scan of his brain.

It's a difficult time for Pui and I. I think we soured breakfast for a lot of people in the cafeteria as we tried to accept that Pat may have irrecoverable severe brain damage. He hope he doesn't, but as time goes by the odds diminish. On the way to breakfast we met a woman whose 6-year-old had walked into surgery, and now would definitely never walk again, might not ever move again, and may not even survive. We talked for a little while, and agreed we were all in a difficult place. I don't know if it's better to have a newborn in this situation or a child you had been with for years. I don't think it really matters - we're parents with desperately ill children; there is no better way to be in this position.

All we can do is what we have been doing: wait, hope, and shower Pat with love and support.

St. Patrick's Day - evening. 1 Week 4 days old.

Today was both good and bad. Pat appears to have stabilized his lactic acid levels - his dialysis brought the levels down to 9 (the scale ends at 20, and he was above that last night), when they turned off the dialysis and since then his levels have been ever so slowly decreasing - they are now 7.5, or thereabouts. Also, his heart appears to be regaining some strength: the beats per minute and the strength of the beats are improving. Finally, a Doppler ultrasound of his intestines showed good blood flow down there.

Unhappily, the C/T scan and the ultrasound show that there is some minor bleeding in his brain, his brain is showing signs of swelling, and there is an area in the ultrasound that some people seem to think is an area that was damaged last Saturday night when he crashed. Others don't seem to think that the images mean that. Also, his kidneys are still not working. The doctors say that is not unexpected, and that they think dialysis can be used to carry the load for the kidneys until they can get a chance to recover themselves.

So why is all of this damage showing up now, days after he crashed? Apparently, when they cooled Pat down after putting him on the ECMO, it gave him a head start on the healing. Now that he is back to 36C, the swelling and other problems are becoming apparent.

It's a little hard to see our little boy, laying still and all swollen with the fluids he's been pumped up with. He looks like a very fat little baby. Very fat. but it's all fluid. They stopped the paralyzing medicine earlier today, but with his poor renal function and dialysis only running a little, it will be "some time" before he starts to move a little. We don't want him to move much - not with two tubes sticking out of his chest cycling all of the blood into and out of his body.

It was quite a performance earlier this evening, when we watched the nurses change shifts. Nurse Ann (whom we really like) spent almost 40 minutes reviewing all of the history, current thinking, every trace, medicine, blood chemistry, test results, IVs, and ECMO with her night-shift replacement. I was actually a bit surprised at how well I was able to follow things: I have unwillingly learned a heck of a lot these last 11 days.

All in all, he seems to be doing better now than he was yesterday. Pat is a very sick little boy, but at least he isn't an urgently very sick little boy. At the moment.

Pui and I are now getting ready for bed, and hopefully some sleep.

St. Patrick's Day - morning

Pat has been hooked up to a new ECMO and a dialysis machine all night, and appears to be recovering a little. His lactic acid levels are still high, but no longer off-the-chart high. The nurses and doctors here are doing everything they can, and Pat seems to be cooperating. He is still desperately ill, but at least he's stabilized for now.

Somehow Pui and I actually managed to sleep last night, though not a lot. I figure this roller-coaster ride is far from over, but at least right now we're not going down. There are ups and downs to come: we are just hoping that the trend becomes more up than down.

Someone defined the difference between hope and optimism for us. Hope is when you examine all the data and alternatives, and find cause for thinking something good may happen. Optimism is when you ignore facts and data and decide that all will be well. We have hope Pat will get better. Pui pointed out that they aren't necessarily mutually exclusive - you can both have hope and be optimistic. So we will be hopefully optimistic - optimistically hopeful? - that Pat can and will recover. Besides, it's St. Patrick's Day - if there was ever a day to trust the luck of the Irish, this is it. Especially if your name is as Irish as 'Patrick Mullarky'.