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.
Saturday, March 21, 2009
Friday, March 20, 2009
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.
Thursday, March 19, 2009
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.
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.
Wednesday, March 18, 2009
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.
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.
Tuesday, March 17, 2009
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.
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'.
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'.
Monday, March 16, 2009
Dire straights
It's now a little past 9 PM. They didn't do a heart catheter on Pat. The C/T showed no problems with his brain or intestines, and even gave them a decent enough a look at his heart that they decided they wouldn't need to catheterize him.
The bad news is that his lactate levels have continued to rise unchecked. When we returned to see Pat, the Critical Care Doctor (Dr. Lewis-Newby) and Dr. Permut (Dr. Cohen's associate) waiting for us. They explained that his lactate levels were off the scale high, and that is not good news. They are doing everything they can, even changing out the ECMO, but they really don't know what is causing it. Dr. Permut thinks it is probably related to the intestines, as he felt any damage that would create that level of lactate would be visible in the brain, but not necessarily in the intestines. But that's about all they can figure out about what is happening.
Both Doctors were very good. They let us know what they were thinking, what they have tried, and will try, and how good Pat's chances are. At this point, he's in dire straights. Basically, it's all up to him now. They are doing everything they can - everything that anyone could do.
The brightest point was when Dr. Permut said that they have had children recover from situations this dire before. We aren't giving up, and won't give up.
Pui and I are out of the area while they trade out the ECMO for a new one, but we'll be back once they finish and we can get back into the room. It's going to be a long night.
The bad news is that his lactate levels have continued to rise unchecked. When we returned to see Pat, the Critical Care Doctor (Dr. Lewis-Newby) and Dr. Permut (Dr. Cohen's associate) waiting for us. They explained that his lactate levels were off the scale high, and that is not good news. They are doing everything they can, even changing out the ECMO, but they really don't know what is causing it. Dr. Permut thinks it is probably related to the intestines, as he felt any damage that would create that level of lactate would be visible in the brain, but not necessarily in the intestines. But that's about all they can figure out about what is happening.
Both Doctors were very good. They let us know what they were thinking, what they have tried, and will try, and how good Pat's chances are. At this point, he's in dire straights. Basically, it's all up to him now. They are doing everything they can - everything that anyone could do.
The brightest point was when Dr. Permut said that they have had children recover from situations this dire before. We aren't giving up, and won't give up.
Pui and I are out of the area while they trade out the ECMO for a new one, but we'll be back once they finish and we can get back into the room. It's going to be a long night.
Pat just can't catch a break. 1 week 3 days old
Pat is in C/T right now, and will go to the catheter lab after that. This morning his lactate levels started to rise, and around 11 AM his nurse (Nurse Ann - we just love her) called some doctors over after running the test several times. A doctor explained to us that the lactate levels is a measure that indicates when something isn't getting enough oxygen.
There followed an ultrasound scan, an X-ray, and another ultrasound. At the second ultrasound Dr. Cohen and Dr. Permut joined the discussion, which went on for some time while Pui and I watched - very alarmed and not following what they were saying at all.
Dr. Cohen came to us as soon as the discussion started to wind down, and explained several things to us. First, they don't know why his lactate levels are high - they scanned his brain and intestines (prime suspects, apparently) and didn't find anything. Also, they still don't know what started the collapse on Saturday. So they planned to do a C/T scan to see if they could find what tissues aren't getting enough oxygen, and a heart catheter to see if the repair is as solid as it appears in the ultrasound, and if the problem might be that the tricuspid regurgitation is greater than they thought. (The tricuspid valve is the only working valve inside Pat's heart, between the right atria and the the right ventricle.) Dr. Cohen told us that the catheter is basically a fishing expedition: they don't really know what they are looking for, and hope to recognize it when they see it. It seems clear the C/T is the same - they are just looking for anomalies.
He also raised the possibility of Pat needing a heart transplant. It's basically a last option, and one they won't seriously consider until all other options are ruled out. If the problem is his tricuspid, he has few options. He said that in babies this young, the flaps of the valve are like tissue paper - too fine and fragile to operate on. Even if we seriously consider a transplant, Pat will have to get much better than he currently is. We pray that it never gets to that point.
Getting Pat moved is a major undertaking: his ECMO machine and all of his IVs all had to be carefully unplugged from the wall, and all the leads to the stationary monitors had to be moved to temporary ones. When they finally wheeled him out to go to C/T, one of the nurses said "I don't think we've ever moved a baby with this much attached. We should get a picture." I didn't take one - I was too numb.
So now we are waiting. It's nearly 6 PM Monday, and the tests should take at least 90 minutes to run and who knows how long to review. Poor Pat - he just can't catch a break. It feels like it's one damn thing after another. We just want him to get better, and all we can do his OK what the doctors want and talk to him and touch him whenever we can. We have a video of him looking up at us and then falling asleep in him mommy's arms, from the night before his surgery. I think of it all the time.
There followed an ultrasound scan, an X-ray, and another ultrasound. At the second ultrasound Dr. Cohen and Dr. Permut joined the discussion, which went on for some time while Pui and I watched - very alarmed and not following what they were saying at all.
Dr. Cohen came to us as soon as the discussion started to wind down, and explained several things to us. First, they don't know why his lactate levels are high - they scanned his brain and intestines (prime suspects, apparently) and didn't find anything. Also, they still don't know what started the collapse on Saturday. So they planned to do a C/T scan to see if they could find what tissues aren't getting enough oxygen, and a heart catheter to see if the repair is as solid as it appears in the ultrasound, and if the problem might be that the tricuspid regurgitation is greater than they thought. (The tricuspid valve is the only working valve inside Pat's heart, between the right atria and the the right ventricle.) Dr. Cohen told us that the catheter is basically a fishing expedition: they don't really know what they are looking for, and hope to recognize it when they see it. It seems clear the C/T is the same - they are just looking for anomalies.
He also raised the possibility of Pat needing a heart transplant. It's basically a last option, and one they won't seriously consider until all other options are ruled out. If the problem is his tricuspid, he has few options. He said that in babies this young, the flaps of the valve are like tissue paper - too fine and fragile to operate on. Even if we seriously consider a transplant, Pat will have to get much better than he currently is. We pray that it never gets to that point.
Getting Pat moved is a major undertaking: his ECMO machine and all of his IVs all had to be carefully unplugged from the wall, and all the leads to the stationary monitors had to be moved to temporary ones. When they finally wheeled him out to go to C/T, one of the nurses said "I don't think we've ever moved a baby with this much attached. We should get a picture." I didn't take one - I was too numb.
So now we are waiting. It's nearly 6 PM Monday, and the tests should take at least 90 minutes to run and who knows how long to review. Poor Pat - he just can't catch a break. It feels like it's one damn thing after another. We just want him to get better, and all we can do his OK what the doctors want and talk to him and touch him whenever we can. We have a video of him looking up at us and then falling asleep in him mommy's arms, from the night before his surgery. I think of it all the time.
Sunday, March 15, 2009
The kindness of strangers. And Friends. 1 week 2 days Old
Patrick is "Stable". No one is saying much about prognosis, waiting to see how he recovers after a couple of days on the ECMO. He does appear to have at least minimal organ function in his liver, kidneys, and brain - good news. But not a guarantee. We are hoping and praying as hard as we can for the best outcome.
While the medical care here is outstanding, what has really made an impression on us today has been how kind everyone is.
We've been receiving email and comments by the bushel, including some from people that have been in the same or similar circumstances. It's good to know that while it is risky, many kids have been through this and come out OK.
In the early afternoon, some Thai friends of ours stopped by unannounced, with fresh fruit. Pui was able to speak Thai beyond a grade-school level with a very nice complete family - Mom, Dad, Son, and Grandma. They have some local Thai restaurants that are really good - Noppakao in Juanita and Silver Spoon in the Trinity area of Redmond.
While we were all talking, the Mom of the baby Pat shared a room with the first night after his surgery came. She had a little angel with Pat's name on it. She gave it to us with her best wishes, completely out of the blue. Very thoughtful. We later hung it beside Patrick along with a Buddha image given to us from our friend Elle back in Bangkok.
I went back to sit with Pat some more, and after a short period of time the CICU desk called that there was a package there for us. I went and found a bag full of food with my name on it: "Rob Mullarky, father of Patrick Mullarky". I found no "from" message. The food looked really good, though I still didn't have much of an appetite. Both healthy and yummy, a rare treat. It felt really nice receiving it, actually. A little like a Secret Santa gift after a bad day.
I put the bag away and returned to Pat, musing about how nice people were, when I got paged again - another visitor. This time it was the Rev. Peter Luton, the man that married Pui and I not quite two years ago. He sat and talked with me for a little while, and we were shortly joined by Pui. Peter was great, as always. When he left us we were both feeling better.
After spending a little more time with Pat, I went upstairs to take a nap. I slept like a log for about three hours. When I woke up I checked my email, and discovered that our Secret Santa was Wyndi and her husband Steven (not David! Sorry about that! - Rob) the parents of Izabell (see her blog here). Pui and I were beginning to feel a little hungry, so we decided to try some of the food they brought us.
It appears that, when you are stressed and scared, "a little hungry" actually means "ravenously hungry". The food was as delicious and healthy as it appeared. Pui took one taste of the first dish and said "They must know I'm Thai." Bullseye, guys. ;-)
Just now Pui just told me that they are going to start Pat on Lasixs (a diuretic) to try and coax his kidneys into working a bit better. The doctor told us that this is not unusual behavior for a baby's kidney after a cardiac arrest episode like he had. I find it both reassuring and a little disturbing that they know what is unusual for infant cardiac arrests.
Pui and I plan to sit by Pat a little longer tonight, then turn in before it gets too late. We are feeling a lot better today than we were yesterday at this time. Our baby is in dire straights, but there is hope, and he is in the very best care. Heck, just look at the picture below:
If you look closely, you can see Baby Pat laying on his back in the center of the spider's web of tubes and wires. The ECMO unit is the stand on the right. I had envisioned it as a big box, maybe with a few tubes feeding into it's mysterious innards. In fact, it's a number of components all plumbed together with tubes and watched 24/7 by a dedicated technician. Very impressive.
If you don't mind alarming photos, the next picture is what Pat looks like now. Or rather, as he looked at about 1:30 AM last night, but there has been little change since then.
The ECMO tubes are the big red tubes. They take out, oxygenate, and pump back in his blood. He is very swollen - if you leave your hand on his head with just a little pressure, after ten minutes or so you will squeeze some of the fluid out of his skin there: when you take your hand away, you leave an impression. It's more than a little unsettling. I've started moving my hand every minute or so. His little ears are all squeezed together by the surrounding skin swelling. When he's older, he going to have to become pretty darn overweight before I start becoming alarmed.
OK, about time to go sit with Pat awhile and then say goodnight.
While the medical care here is outstanding, what has really made an impression on us today has been how kind everyone is.
We've been receiving email and comments by the bushel, including some from people that have been in the same or similar circumstances. It's good to know that while it is risky, many kids have been through this and come out OK.
In the early afternoon, some Thai friends of ours stopped by unannounced, with fresh fruit. Pui was able to speak Thai beyond a grade-school level with a very nice complete family - Mom, Dad, Son, and Grandma. They have some local Thai restaurants that are really good - Noppakao in Juanita and Silver Spoon in the Trinity area of Redmond.
While we were all talking, the Mom of the baby Pat shared a room with the first night after his surgery came. She had a little angel with Pat's name on it. She gave it to us with her best wishes, completely out of the blue. Very thoughtful. We later hung it beside Patrick along with a Buddha image given to us from our friend Elle back in Bangkok.
I went back to sit with Pat some more, and after a short period of time the CICU desk called that there was a package there for us. I went and found a bag full of food with my name on it: "Rob Mullarky, father of Patrick Mullarky". I found no "from" message. The food looked really good, though I still didn't have much of an appetite. Both healthy and yummy, a rare treat. It felt really nice receiving it, actually. A little like a Secret Santa gift after a bad day.
I put the bag away and returned to Pat, musing about how nice people were, when I got paged again - another visitor. This time it was the Rev. Peter Luton, the man that married Pui and I not quite two years ago. He sat and talked with me for a little while, and we were shortly joined by Pui. Peter was great, as always. When he left us we were both feeling better.
After spending a little more time with Pat, I went upstairs to take a nap. I slept like a log for about three hours. When I woke up I checked my email, and discovered that our Secret Santa was Wyndi and her husband Steven (not David! Sorry about that! - Rob) the parents of Izabell (see her blog here). Pui and I were beginning to feel a little hungry, so we decided to try some of the food they brought us.
It appears that, when you are stressed and scared, "a little hungry" actually means "ravenously hungry". The food was as delicious and healthy as it appeared. Pui took one taste of the first dish and said "They must know I'm Thai." Bullseye, guys. ;-)
Just now Pui just told me that they are going to start Pat on Lasixs (a diuretic) to try and coax his kidneys into working a bit better. The doctor told us that this is not unusual behavior for a baby's kidney after a cardiac arrest episode like he had. I find it both reassuring and a little disturbing that they know what is unusual for infant cardiac arrests.
Pui and I plan to sit by Pat a little longer tonight, then turn in before it gets too late. We are feeling a lot better today than we were yesterday at this time. Our baby is in dire straights, but there is hope, and he is in the very best care. Heck, just look at the picture below:
If you look closely, you can see Baby Pat laying on his back in the center of the spider's web of tubes and wires. The ECMO unit is the stand on the right. I had envisioned it as a big box, maybe with a few tubes feeding into it's mysterious innards. In fact, it's a number of components all plumbed together with tubes and watched 24/7 by a dedicated technician. Very impressive.
If you don't mind alarming photos, the next picture is what Pat looks like now. Or rather, as he looked at about 1:30 AM last night, but there has been little change since then.
The ECMO tubes are the big red tubes. They take out, oxygenate, and pump back in his blood. He is very swollen - if you leave your hand on his head with just a little pressure, after ten minutes or so you will squeeze some of the fluid out of his skin there: when you take your hand away, you leave an impression. It's more than a little unsettling. I've started moving my hand every minute or so. His little ears are all squeezed together by the surrounding skin swelling. When he's older, he going to have to become pretty darn overweight before I start becoming alarmed.
OK, about time to go sit with Pat awhile and then say goodnight.
Scary, scary night
First, Pat is still alive.
There is some question about whether he will last the week.
Pui and I had gone home at about 7 to try and get some sleep. Grandma was staying at the hospital. At about 9:40 she called us, telling us that the CICU desk called and said that Pat's parents needed to go there. I was so unsettled I dropped the phone. I rousted Dad out of bed and got him to drive Pui and I to the Hospital: was in no condition to drive.
It was an incredibly long 15 minutes to get there.
Once there, we learned that Pat had crashed a little earlier: his heartbeat and breathing had essentially just stopped. The doctors manually massaged his heart for almost an hour, until they got the team and equipment together to put Pat on the ECMO machine. (ECMO - extracorporeal membrane oxygenation - is basically a heart-lung machine.) He told us that they were trying to hook him onto the machine as we spoke, but that we should be prepared: usually children are put onto the machine in much more controlled circumstances, with more preparation. Also, given the type of sudden crash and prolonged CPR, there was a chance of severe organ damage.
About an hour later, the doctor returned to tell us that Pat had been successfully plugged into the machine, and Pui and I could see him in a few minutes. And I thought the drive in had been long.
The doctor (Dr. Mazor, a straight-shooter who has the good taste to share my first name) explained to us the benefits and dangers of the ECMO, and we discussed possible outcomes. He was encouraged that the initial chemistry from the hook-up showed that his organs hadn't all stopped working, and appeared far more hopeful than he had been an hour earlier. He hadn't been pessimistic earlier, but he was careful not to give us much in the way of expectations.
We were able to see Pat about 20 minutes after that. He has a new bug red tube coming straight up out of his chest, and another one going in at a flatter angle. He is considerably more swollen than he was before. He is completely still because of the drugs he has been given to stop him moving and keep him from feeling any pain. They have lowered his core temperature several degrees Celsius, because it appears that helps slow down metabolic loads and gives him more chance to heal.
We will know in the next two or three days if he will survive this setback. It may take longer to discover if there has been any permanent damage to some of his other organs, most notably - and terrifyingly - his brain.
It's now 2 AM, and Pui and I are going to try and sleep. Not the kind of night we were hoping for. :-(
There is some question about whether he will last the week.
Pui and I had gone home at about 7 to try and get some sleep. Grandma was staying at the hospital. At about 9:40 she called us, telling us that the CICU desk called and said that Pat's parents needed to go there. I was so unsettled I dropped the phone. I rousted Dad out of bed and got him to drive Pui and I to the Hospital: was in no condition to drive.
It was an incredibly long 15 minutes to get there.
Once there, we learned that Pat had crashed a little earlier: his heartbeat and breathing had essentially just stopped. The doctors manually massaged his heart for almost an hour, until they got the team and equipment together to put Pat on the ECMO machine. (ECMO - extracorporeal membrane oxygenation - is basically a heart-lung machine.) He told us that they were trying to hook him onto the machine as we spoke, but that we should be prepared: usually children are put onto the machine in much more controlled circumstances, with more preparation. Also, given the type of sudden crash and prolonged CPR, there was a chance of severe organ damage.
About an hour later, the doctor returned to tell us that Pat had been successfully plugged into the machine, and Pui and I could see him in a few minutes. And I thought the drive in had been long.
The doctor (Dr. Mazor, a straight-shooter who has the good taste to share my first name) explained to us the benefits and dangers of the ECMO, and we discussed possible outcomes. He was encouraged that the initial chemistry from the hook-up showed that his organs hadn't all stopped working, and appeared far more hopeful than he had been an hour earlier. He hadn't been pessimistic earlier, but he was careful not to give us much in the way of expectations.
We were able to see Pat about 20 minutes after that. He has a new bug red tube coming straight up out of his chest, and another one going in at a flatter angle. He is considerably more swollen than he was before. He is completely still because of the drugs he has been given to stop him moving and keep him from feeling any pain. They have lowered his core temperature several degrees Celsius, because it appears that helps slow down metabolic loads and gives him more chance to heal.
We will know in the next two or three days if he will survive this setback. It may take longer to discover if there has been any permanent damage to some of his other organs, most notably - and terrifyingly - his brain.
It's now 2 AM, and Pui and I are going to try and sleep. Not the kind of night we were hoping for. :-(
Saturday, March 14, 2009
Norwood-Sano recap - or - WHAT happened to Pat?
I've mentioned in the blog before that the surgery Pat is called the Norwood-Sano. What the heck is that?
Normally, a human heart pumps blood Left Heart -> Body -> Right Heart -> Lungs -> Left Heart, etc. But without a left ventricle, Pat's heart can't work that way. So the doctors here did four things.
First, the ductus arteriosus (the DA) - the connection between the Pulmonary Artery (the artery from the right side of the heart) and the Aorta (the artery from the left side of the heart) - is cut. That was what was keeping him alive, but after this surgery it's not needed anymore. All babies are born with the DA open, and it closes usually in the first week after birth. Unfortunately, that was what was keeping Pat alive, so his was being kept artificially open using a drug called prostiglandin. Prostiglandin has other side effects (poor temperature control, discomfort, etc.) and can't be kept up for long.
Next, the Aorta - normally the largest artery in the body - is very small for HLHS babies. The doctors cut his undersized aorta off of the heart and cut a slit along its length. They then sewed on tissue to make it a much larger artery.
Third, they sever the Pulmonary Artery, sew shut the side opposite the heart, and sew the newly enlarged Aorta onto valve the Pulmonary Artery used to attach to.
Finally, they install a gore-tex tube from inside the right ventricle and attach it to the Pulmonary Artery. The picture below (shamelessly lifted from www.pted.org) shows what the heart looks like after the Norwood-Sano is complete.
This is what Pat's heart looks like now. That's a big change. But after recovery he will be able to live without prostiglandin, and will be able to get big enough for the next procedure, the Glenn Shunt.
In the Glenn shunt they remove the gore-tex tube, sever the Superior Vena Cava, and attach it directly to the pulmonary artery. The picture below - lifted from www.cincinnatichildrens.org - shows the shunt on a HRHS heart. It labels the Superior Vena Cava as "3". The "4" is a Blalock-Taussig Shunt (B-T Shunt) being removed (The Sano Modification is now usually used instead of B-T for HLHS babies). After this surgery, all the blood returning from Pat's head and shoulders will go straight to the lungs without going through the heart.
Finally, when Pat is between 3 and 5 years old, the final surgery will extend the Inferior Vena Cava using more gore-tex ("5" in the chart below from www.cincinnatichildrens.org) past the heart to the pulmonary artery. Pat will then have a two-chamber heart, and may not ever need another heart surgery. We hope.
Normally, a human heart pumps blood Left Heart -> Body -> Right Heart -> Lungs -> Left Heart, etc. But without a left ventricle, Pat's heart can't work that way. So the doctors here did four things.
First, the ductus arteriosus (the DA) - the connection between the Pulmonary Artery (the artery from the right side of the heart) and the Aorta (the artery from the left side of the heart) - is cut. That was what was keeping him alive, but after this surgery it's not needed anymore. All babies are born with the DA open, and it closes usually in the first week after birth. Unfortunately, that was what was keeping Pat alive, so his was being kept artificially open using a drug called prostiglandin. Prostiglandin has other side effects (poor temperature control, discomfort, etc.) and can't be kept up for long.
Next, the Aorta - normally the largest artery in the body - is very small for HLHS babies. The doctors cut his undersized aorta off of the heart and cut a slit along its length. They then sewed on tissue to make it a much larger artery.
Third, they sever the Pulmonary Artery, sew shut the side opposite the heart, and sew the newly enlarged Aorta onto valve the Pulmonary Artery used to attach to.
Finally, they install a gore-tex tube from inside the right ventricle and attach it to the Pulmonary Artery. The picture below (shamelessly lifted from www.pted.org) shows what the heart looks like after the Norwood-Sano is complete.
This is what Pat's heart looks like now. That's a big change. But after recovery he will be able to live without prostiglandin, and will be able to get big enough for the next procedure, the Glenn Shunt.
In the Glenn shunt they remove the gore-tex tube, sever the Superior Vena Cava, and attach it directly to the pulmonary artery. The picture below - lifted from www.cincinnatichildrens.org - shows the shunt on a HRHS heart. It labels the Superior Vena Cava as "3". The "4" is a Blalock-Taussig Shunt (B-T Shunt) being removed (The Sano Modification is now usually used instead of B-T for HLHS babies). After this surgery, all the blood returning from Pat's head and shoulders will go straight to the lungs without going through the heart.
Finally, when Pat is between 3 and 5 years old, the final surgery will extend the Inferior Vena Cava using more gore-tex ("5" in the chart below from www.cincinnatichildrens.org) past the heart to the pulmonary artery. Pat will then have a two-chamber heart, and may not ever need another heart surgery. We hope.
Post-Surgery Day 1 - Puff Puff Baby: 1 week 1 day Old
This morning Pui and I went in and saw Baby Pat after what was for me a good night's sleep. Pui, not so much. She's sleeping now while I catch up on the blog. We came to the hospital and met Grandma at the cafeteria - Grandma slept here last night, something both Pui and I were very comforted by. We ate breakfast with a HLHS baby mother named Dena. Her boy is not quite 2 weeks ahead of Pat, and they are talking about being able to take him home Wednesday. They have our best wishes.
After we ate, I went straight to see Pat while Pui pumped some more milk. The knock-out anesthesia has worn off of Pat, but he is on Morphine and feeling no pain. He's moving a little here and there, and occasionally makes sucking motions with his lips. Keep it up Pat - we want to feed you through your mouth just as soon and as much as we can!
I have some pictures from yesterday to post. The first one is Pui and I wishing Pat good luck just before he was wheeled into the OR:
The next picture was taken around eight hours later. This is Pat in the CICU. You can see how many tubes and wires are there. Each one has a specific purpose.
Next, another shot of all the equipment Pat is hooked up to. (Pat is the pinkish bit in the lower right of the picture.)
The next picture is a shot of Pat's face. You can see how puffed up he his. This is normal for after a surgery as major as this. That's what I was told, anyway, and I believe them: they said it like they've said it a thousand times before.
Finally, an overall shot of Patrick. It's a little alarming. The ovoid area on his chest is a piece of rubber they put on over the opening in his chest. The three tubes coming out are draining fluids from his chest. He has an IV hooked into arteries on either arm. The tubes that are making sure he breathes go in through his nose. Looking at this picture, you can get a pretty good idea how major this surgery really is.
It's amazing that they were able to change so much inside such a little guy. They made some pretty big changes to his little tiny heart. It's scary to see our precious little boy looking so ... uncomfortable, but this is necessary if we are going to have him with us for years and years. And he is not uncomfortable - they have him on morphine, and the nurses are very aware and concerned that he not suffer.
Speaking with the nurse, we were told that Pat won't be aware of us much today, and that we should take care of ourselves. If taking care of ourselves means being in the room with him, or if it means just laying down and sleeping all day, we should do that. We plan to alternate, with eating and pumping milk in there as well. And writing in the blog for me. In the next few days Pat will begin to recover, will open his eyes and become more aware of his surroundings, and we want to be there for him at that time. And not be exhausted wrecks.
After we ate, I went straight to see Pat while Pui pumped some more milk. The knock-out anesthesia has worn off of Pat, but he is on Morphine and feeling no pain. He's moving a little here and there, and occasionally makes sucking motions with his lips. Keep it up Pat - we want to feed you through your mouth just as soon and as much as we can!
I have some pictures from yesterday to post. The first one is Pui and I wishing Pat good luck just before he was wheeled into the OR:
The next picture was taken around eight hours later. This is Pat in the CICU. You can see how many tubes and wires are there. Each one has a specific purpose.
Next, another shot of all the equipment Pat is hooked up to. (Pat is the pinkish bit in the lower right of the picture.)
The next picture is a shot of Pat's face. You can see how puffed up he his. This is normal for after a surgery as major as this. That's what I was told, anyway, and I believe them: they said it like they've said it a thousand times before.
Finally, an overall shot of Patrick. It's a little alarming. The ovoid area on his chest is a piece of rubber they put on over the opening in his chest. The three tubes coming out are draining fluids from his chest. He has an IV hooked into arteries on either arm. The tubes that are making sure he breathes go in through his nose. Looking at this picture, you can get a pretty good idea how major this surgery really is.
It's amazing that they were able to change so much inside such a little guy. They made some pretty big changes to his little tiny heart. It's scary to see our precious little boy looking so ... uncomfortable, but this is necessary if we are going to have him with us for years and years. And he is not uncomfortable - they have him on morphine, and the nurses are very aware and concerned that he not suffer.Speaking with the nurse, we were told that Pat won't be aware of us much today, and that we should take care of ourselves. If taking care of ourselves means being in the room with him, or if it means just laying down and sleeping all day, we should do that. We plan to alternate, with eating and pumping milk in there as well. And writing in the blog for me. In the next few days Pat will begin to recover, will open his eyes and become more aware of his surroundings, and we want to be there for him at that time. And not be exhausted wrecks.
Friday, March 13, 2009
What a day: 1 week old
It's now after 9 PM, and Pat is doing well. He's back in the CICU, with many many tubes and wires attached. He's puffy and very still - he only moves to breathe, aided by the respirator. Actually, the respirator is pretty much doing it all - he's so drugged he can't breathe unaided.
It's been a long, eventful, stressful, and exhausting day. Pui and I are about to go to sleep. I have some photos, but I'm too tired to post them now. Tomorrow.
The day has been tense and tiring, but more than worth it. Pat's heart has been re-plumbed so that he can live, and now all he has to do is hold on through recovery. Then he can start getting ready for the next major surgery - but nothing will ever be as dramatic or quite so risky as this first one. Pui and I will be able to sleep well tonight.
Norwood Day! Pat is in surgery.
3:00 PM
Our aggressive waiting has paid off. We spoke with Dr. Cohen almost an hour ago. Pat is out of surgery, and they are getting him transferred to his new CICU room. Dr. Cohen said the surgery went smoothly, and there were no problems or issues. He did say that Pat is not out of the woods yet - he has just had a very major surgery and a significant physiological change, and has a lot of healing and adjusting to do. He will be swollen and puffy and utterly still. But that's a good thing.
His chest is still open, and will remain that way until the swelling goes down. It's not an open wound - there is a covering over it - but it also makes it easier for the pacing wires and chest tubes still in there.
We are now putting our mad waiting skills to use waiting to see Pat in the room he'll be in for the next few days.
Our little boy has gotten this far - but he still has a distance to go. We would have spared him all of this if we could, but we want to have him in our lives for years and years, and we have to do this if we want that to happen. It's worth it.
12:20 PM
We just got another page. The receptionist passed on the message that the repair is almost complete, and they will begin the re-warming process shortly. They induce hypothermia to do the repair, and Dr. Cohen told us that the re-warming process is long, slow, and takes a variable amount of time.
We are very glad to hear that the main part of the surgery appears to be over, and are going to re-double our efforts at waiting.
10:15 AM
I just got the first page. I called the NICU desk when the pager went off, and the receptionist told me we were paged to inform us that little Pat is all hooked up - he's intubated, has his lines all in, and sedated. Now the surgery proper is beginning.
So far, so good. Now we go back to our task: waiting.
8:30 AM
Pui and I got up at 5 AM, even though our alarm was set at 5:30. We spent a lot of the morning with Pat, until the anesthesiologist came for him at about five minutes before 8. We got to give him a quick kiss and orders to cooperate with the nice doctors, and we watched him get wheeled into the OR. Now we are finally eating breakfast. Trying to eat breakfast.
We will get paged four times. Once when they have all of the tubes put into him - for samples, for blood control, for drugs. Once when they put him onto the Heart-Lung machine. Once when he's taken off the heart-lung machine, and once when everything is finished.
The waiting has begun.
Our aggressive waiting has paid off. We spoke with Dr. Cohen almost an hour ago. Pat is out of surgery, and they are getting him transferred to his new CICU room. Dr. Cohen said the surgery went smoothly, and there were no problems or issues. He did say that Pat is not out of the woods yet - he has just had a very major surgery and a significant physiological change, and has a lot of healing and adjusting to do. He will be swollen and puffy and utterly still. But that's a good thing.
His chest is still open, and will remain that way until the swelling goes down. It's not an open wound - there is a covering over it - but it also makes it easier for the pacing wires and chest tubes still in there.
We are now putting our mad waiting skills to use waiting to see Pat in the room he'll be in for the next few days.
Our little boy has gotten this far - but he still has a distance to go. We would have spared him all of this if we could, but we want to have him in our lives for years and years, and we have to do this if we want that to happen. It's worth it.
12:20 PM
We just got another page. The receptionist passed on the message that the repair is almost complete, and they will begin the re-warming process shortly. They induce hypothermia to do the repair, and Dr. Cohen told us that the re-warming process is long, slow, and takes a variable amount of time.
We are very glad to hear that the main part of the surgery appears to be over, and are going to re-double our efforts at waiting.
10:15 AM
I just got the first page. I called the NICU desk when the pager went off, and the receptionist told me we were paged to inform us that little Pat is all hooked up - he's intubated, has his lines all in, and sedated. Now the surgery proper is beginning.
So far, so good. Now we go back to our task: waiting.
8:30 AM
Pui and I got up at 5 AM, even though our alarm was set at 5:30. We spent a lot of the morning with Pat, until the anesthesiologist came for him at about five minutes before 8. We got to give him a quick kiss and orders to cooperate with the nice doctors, and we watched him get wheeled into the OR. Now we are finally eating breakfast. Trying to eat breakfast.
We will get paged four times. Once when they have all of the tubes put into him - for samples, for blood control, for drugs. Once when they put him onto the Heart-Lung machine. Once when he's taken off the heart-lung machine, and once when everything is finished.
The waiting has begun.
Thursday, March 12, 2009
Big news - Tomorrow is the big day! 6 Days Old
We had a fairly unsettled morning, followed by an exciting afternoon.
But first, the big news: Pat is going in for his surgery at 8 AM tomorrow morning. The surgery will last 3 - 5 hours (or possibly longer), and then he will be in essentially a drug-induced coma for, in the surgeon's words, "several days". He said not less than two and very unlikely to be more than 7. He told us that the surgery was well understood, and he thought the worst case was that he would come out on ECMO , essentially a heart-lung machine.
We are both terrified and very excited. Our baby is a strong little guy, and we are hopeful that this is the first successful step in giving him the chance for a normal life.
So, what is ECMO? It stands for "extracorporeal membrane oxygenation" (Duh). It is apparently a device that both circulates and oxygenates blood.
OK, back to the narrative. I went downstairs to see Pat after we ate breakfast at the Hospital, only to discover that he wasn't in the same room. He had been moved to a room in the CICU (From the NICU) overnight. (What is the CICU and NICU? NICU is the Neonatal Intensive Care Unit, for newborns. The CICU is the Cardiac Intensive Care Unit, for cardiac patients. Pat qualifies for both.) Apparently, the room he was in was a single room, and they had to make room for a baby that needed isolation. The nearest ICU room available was a CICU room just around the corner, with space for two patients. There is another child in the other half of the room (separated by a curtain) but we don't know much about her.
When I found the room Pat was in, a nurse was doing a sterile procedure and I couldn't go in. She was adding another PICC line, because the one Pat had was beginning to show signs of a reaction. So I had to go away for an hour or so. When we returned, it was to learn that the installation didn't work.
At the rounds, we heard the team go back and forth on whether or not it would be necessary to put in another PICC line, or another IV line, given that he would likely have his surgery tomorrow. You can imagine that our ears picked up at that comment. Someone had mentioned something like that a little earlier, but we've been hearing so many things I didn't really believe it. After rounds, one of the cardiology doctors came back and told us that he was indeed going in tomorrow, and the surgeon would likely come talk to us later in the afternoon.
In the meantime, I got another chance to hold Pat. For 90 minutes I got to hold him in my arms. It's amazing that doing nothing but holding a little baby in my arms could keep me so utterly enthralled so long. Heck, I get bored and have trouble keeping my attention on a 30-second TV commercial, much less a passive little sack of protoplasm for 90 minutes. A very cute, sweet, adorable, fascinating, and enchanting sack of protoplasm. I was sad when it ended.
Pui and I waited for the surgeon to come, until at last Pui could handle it no longer and left for the bathroom. She was gone barely 60 seconds when Dr. Cohen came by. Naturally. He was very nice and waited around for Pui to return, at which point he talked to us about the surgery, the timing, probable outcomes, where we should wait, etc. He answered our questions, and then we signed the release forms. Tomorrow at 8 AM he goes into OR. I wonder how much sleep we'll get tonight. "If" might be more accurate than "How much".
Before we met with the surgeon but after we learned he would be going in to the OR tomorrow, we (That is, Pui) realized that we had an appointment with the US Government tomorrow, so Pui's biometrics could be measured. We have three appointments for the same thing - one tomorrow, one 10 days later, and another 7 days after that. We had all three appointment notices, plus the surgical release. We called the Government help line to ask about the discrepancy, and their reply was to go to the first appointment but bring all three appointment notices. My Mom had the idea of calling Pat's Aunt Tammy (Tammy Mullarky) as probably the best person we could ask to help us out. We both agreed, and Mom called her while Pui and I waited for the surgeon. After we finished that, I talked to Tammy and was delighted to learn she was willing to help out. She came over to the hospital to collect our documents, and got to meet little Pat. He was in a particularly cute position - on his tummy with his little butt in the air. We are so thankful that we have so many people willing to help us out. If Tammy had been out of town, there are probably a dozen other people we could ask. Fortunately, we didn't have to. It's very reassuring to have Aunt Tammy on the case - she will do a great job for us, guaranteed.
But first, the big news: Pat is going in for his surgery at 8 AM tomorrow morning. The surgery will last 3 - 5 hours (or possibly longer), and then he will be in essentially a drug-induced coma for, in the surgeon's words, "several days". He said not less than two and very unlikely to be more than 7. He told us that the surgery was well understood, and he thought the worst case was that he would come out on ECMO , essentially a heart-lung machine.
We are both terrified and very excited. Our baby is a strong little guy, and we are hopeful that this is the first successful step in giving him the chance for a normal life.
So, what is ECMO? It stands for "extracorporeal membrane oxygenation" (Duh). It is apparently a device that both circulates and oxygenates blood.
OK, back to the narrative. I went downstairs to see Pat after we ate breakfast at the Hospital, only to discover that he wasn't in the same room. He had been moved to a room in the CICU (From the NICU) overnight. (What is the CICU and NICU? NICU is the Neonatal Intensive Care Unit, for newborns. The CICU is the Cardiac Intensive Care Unit, for cardiac patients. Pat qualifies for both.) Apparently, the room he was in was a single room, and they had to make room for a baby that needed isolation. The nearest ICU room available was a CICU room just around the corner, with space for two patients. There is another child in the other half of the room (separated by a curtain) but we don't know much about her.
When I found the room Pat was in, a nurse was doing a sterile procedure and I couldn't go in. She was adding another PICC line, because the one Pat had was beginning to show signs of a reaction. So I had to go away for an hour or so. When we returned, it was to learn that the installation didn't work.
At the rounds, we heard the team go back and forth on whether or not it would be necessary to put in another PICC line, or another IV line, given that he would likely have his surgery tomorrow. You can imagine that our ears picked up at that comment. Someone had mentioned something like that a little earlier, but we've been hearing so many things I didn't really believe it. After rounds, one of the cardiology doctors came back and told us that he was indeed going in tomorrow, and the surgeon would likely come talk to us later in the afternoon.
In the meantime, I got another chance to hold Pat. For 90 minutes I got to hold him in my arms. It's amazing that doing nothing but holding a little baby in my arms could keep me so utterly enthralled so long. Heck, I get bored and have trouble keeping my attention on a 30-second TV commercial, much less a passive little sack of protoplasm for 90 minutes. A very cute, sweet, adorable, fascinating, and enchanting sack of protoplasm. I was sad when it ended.
Pui and I waited for the surgeon to come, until at last Pui could handle it no longer and left for the bathroom. She was gone barely 60 seconds when Dr. Cohen came by. Naturally. He was very nice and waited around for Pui to return, at which point he talked to us about the surgery, the timing, probable outcomes, where we should wait, etc. He answered our questions, and then we signed the release forms. Tomorrow at 8 AM he goes into OR. I wonder how much sleep we'll get tonight. "If" might be more accurate than "How much".
Before we met with the surgeon but after we learned he would be going in to the OR tomorrow, we (That is, Pui) realized that we had an appointment with the US Government tomorrow, so Pui's biometrics could be measured. We have three appointments for the same thing - one tomorrow, one 10 days later, and another 7 days after that. We had all three appointment notices, plus the surgical release. We called the Government help line to ask about the discrepancy, and their reply was to go to the first appointment but bring all three appointment notices. My Mom had the idea of calling Pat's Aunt Tammy (Tammy Mullarky) as probably the best person we could ask to help us out. We both agreed, and Mom called her while Pui and I waited for the surgeon. After we finished that, I talked to Tammy and was delighted to learn she was willing to help out. She came over to the hospital to collect our documents, and got to meet little Pat. He was in a particularly cute position - on his tummy with his little butt in the air. We are so thankful that we have so many people willing to help us out. If Tammy had been out of town, there are probably a dozen other people we could ask. Fortunately, we didn't have to. It's very reassuring to have Aunt Tammy on the case - she will do a great job for us, guaranteed.
Wednesday, March 11, 2009
New friends: Mirabel Alice the Cute
The other day Cristy came over to me and introduced herself. I had seen her posts on the Seattle Conjenital Heart Defect group, but had never met her. She had her daughter with her - 4 month-old Mirabel Alice, another HLHS baby. And she is cute as a button. She is post-Norwood but pre-Glenn. She is interactive, looks at whoever is speaking (with big eyes) and when you smile at her she smiles back. She looks and acts like any normal baby girl, something Pui and I find very comforting. You can see a lot of pictures of her on her blog (Linked here) but I thought I would post the pictures I got. My only regret is I missed the smile that was on her face just before I took this first picture.
The second picture I think is cute also. I can't think whether it looks like I just took candy from her (I didn't! It was mine to begin with!) Or if she's just getting a head start practicing on her "Please can I have a car for my 16th Birthday" expression. ;-)
The second picture I think is cute also. I can't think whether it looks like I just took candy from her (I didn't! It was mine to begin with!) Or if she's just getting a head start practicing on her "Please can I have a car for my 16th Birthday" expression. ;-)
Out from under the lights! 5 Days Old
Pat was doing well today. His bilirubin is down, so the blue lights and the nasty eye protection he had to wear (and kept trying to push off) was removed. He still needs to be in the tent though - being in a low oxygen environment is better than having to be on yet another drug. I just hope he doesn't develop an unhealthy attachment to plastic bags.
I went through and posted a bunch of new pictures on Flickr - you can see them by clicking on these words.
At this time we still aren't sure exactly when the surgery will be. "Sometime next week" is the official line. It's nice that they aren't worried about him being OK until then, but it would be nice to know. I think we won't have anything definitive until after the surgery team decides on the week's schedule Monday morning.
Until then, we can continue to hold him outside the tent a little, and hold his hand and touch him in the tent (with the plastic sealed as best we can around our arms) the rest of the time. His skin is so soft, and he seems to appreciate the contact: we can see how his breathing seems to be more stable when we hold or touch him. Not that we wouldn't spend all day there every day just to look at such a doll, but being able to touch him is a huge benefit. I think it helps Pat too.
I went through and posted a bunch of new pictures on Flickr - you can see them by clicking on these words.
At this time we still aren't sure exactly when the surgery will be. "Sometime next week" is the official line. It's nice that they aren't worried about him being OK until then, but it would be nice to know. I think we won't have anything definitive until after the surgery team decides on the week's schedule Monday morning.
Until then, we can continue to hold him outside the tent a little, and hold his hand and touch him in the tent (with the plastic sealed as best we can around our arms) the rest of the time. His skin is so soft, and he seems to appreciate the contact: we can see how his breathing seems to be more stable when we hold or touch him. Not that we wouldn't spend all day there every day just to look at such a doll, but being able to touch him is a huge benefit. I think it helps Pat too.
Tuesday, March 10, 2009
Picture of Pat with his Daddy
Finally, I got home and ate, and now am downloading pictures. While I was holding Pat, I needed to keep a tube with a low oxygen mix near him to help keep his SATs low (SAT is a measure of oxygen in the blood). The first picture is Pat in my arms.
The next one is me holding the baby.
Wait a minute ... that's my baby, but who's that bald guy holding him? That's not what my picture with my son should look like! It should look like this:
Yeah, that's more like it!
The next picture was taken at the moment I realized that, yes, I am indeed really a father now.
Finally, here's a picture of the sunset, with the day's last rays shining down on our little boy... in his plastic tent. The sun did shine directly on him his second day - well directly on him through one window.
The next one is me holding the baby.
Wait a minute ... that's my baby, but who's that bald guy holding him? That's not what my picture with my son should look like! It should look like this:
Yeah, that's more like it!
The next picture was taken at the moment I realized that, yes, I am indeed really a father now.
Finally, here's a picture of the sunset, with the day's last rays shining down on our little boy... in his plastic tent. The sun did shine directly on him his second day - well directly on him through one window.
Daddy's turn! Day 5
Today I got to hold Pat for a bit over 45 minutes. I held him for a moment just after he was born, and then not again until this afternoon. When he was born, the day was sunny and cloudless all day. The next four days we had clouds, rain, sleet, snow, and freezing temperatures. This afternoon when I help Pat, the clouds disappeared and the sun shone down from a clear blue sky. Clear and blue from what I could see out the window, anyway.
Today he is under the lights all day, and is in his tent as well. He needs to be in a reduced oxygen environment pretty much all the time now, so when I held him I had to hold a gas tube before his face - a small price to pay. His bilirubin was down a little, which along with his increasing age means everyone is less worried about it. But he still gets to bathe in blue light. But it's OK - he's much more peaceful now. He is no longer running a temperature, and appears to be more comfortable. Mostly he just sleeps.
Talking with the people here, it appears that next Tuesday - a week from today - will be the likely day for his surgery. I think that's more of a guesstimate than a firm estimation, but it's better than "sometime next week".
I'm having trouble downloading pictures here this afternoon, so later tonight I'll post some pictures, including what will no doubt become an iconic father-son image.
Today he is under the lights all day, and is in his tent as well. He needs to be in a reduced oxygen environment pretty much all the time now, so when I held him I had to hold a gas tube before his face - a small price to pay. His bilirubin was down a little, which along with his increasing age means everyone is less worried about it. But he still gets to bathe in blue light. But it's OK - he's much more peaceful now. He is no longer running a temperature, and appears to be more comfortable. Mostly he just sleeps.
Talking with the people here, it appears that next Tuesday - a week from today - will be the likely day for his surgery. I think that's more of a guesstimate than a firm estimation, but it's better than "sometime next week".
I'm having trouble downloading pictures here this afternoon, so later tonight I'll post some pictures, including what will no doubt become an iconic father-son image.
Monday, March 9, 2009
Today's Cute Picture
Bloggers seem to occasionally post cute pictures - so here is an obligatory cute picture.
Still not sure when: Day 4
This morning I woke up early and drove in. 
I was near the hospital when Pui called me, saying that she had missed me last night. I had to ask her not to make me cry while I was driving - I too had a nearly sleepless night and missed her a lot.
I was near the hospital when Pui called me, saying that she had missed me last night. I had to ask her not to make me cry while I was driving - I too had a nearly sleepless night and missed her a lot.We were there for the cardiologist's meeting, and learned that the team was thinking of having the surgery next week. S
o we still don't know when it will be - it could be late this week if another baby gets sick and can't go to their scheduled slot, or it could mean that we have at least a week to wait. We will just have to wait and see. We did hear that the surgical group is currently thinking that the standard Norwood/Sano procedure would be appropriate, even though he has moderate tricuspid regurgitation.
o we still don't know when it will be - it could be late this week if another baby gets sick and can't go to their scheduled slot, or it could mean that we have at least a week to wait. We will just have to wait and see. We did hear that the surgical group is currently thinking that the standard Norwood/Sano procedure would be appropriate, even though he has moderate tricuspid regurgitation. His bilirubin rose a little, so he remains under the bilirubin lights. Also, his SATs (Oxygen Saturation levels, I believe) keep creeping up and so he's under the low oxygen tent today. He's gained 119 grams (4.2 oz), a 4% weight gain in 3 days. Everything else seems to be going well, and the we choose to be encouraged that the doctors aren't worried enough to schedule surgery as soon as possible. 
Pui and I did get a chance to touch him for about 40 minutes while the nurse was busy with other things. He really likes having something pushing on his head and his feet. The last picture is Daddy calming Pat. Well, Daddy's hand anyway.
Sunday, March 8, 2009
Waiting for the doctors: Day 3
The last two days have been both eventful and boring. Eventful in that we have learned a lot, boring in that there's not a lot for us to do. Mostly, we have been rejoicing at having Nong Pat to coo at.
Saturday morning I got paged at about 9 AM - the team wanted to install a PICC - sort of like an IV, except they run a line from an arm or a leg into a vein, and feed the line deep into the cardiovascular system. It isn't easily pulled out, and it delivers drugs and fluids deep into the system. They had been trying to install a second IV both at the UW and at Children's, but without success - Nong Pat's veins are very small and fragile. He already had several small pokes on his hands and feet, and the thought of one that would last a long time had strong appeal. They installed the PICC in his foot, and have been feeding him intravenously through it. When I was allowed back in (They didn't want me there for the PICC installation - I assumed it's a sterile procedure, what with all of that tubing going into his veins and stuff) Pat was under a little plastic tent. They had him in a low oxygen environment to help his circulation. It seems counter intuitive to me, but everyone was quite matter of fact about it. Fortunately, within a few hours they decided it wasn't needed.
The drug that is keeping him alive - Prostiglandin - has some side effects.
It makes Pat cranky, and gives him a slight temperature. His crankiness goes away when he's held, so we make the painful sacrifice of holding and cuddling our baby every chance we get. It's hard, but we're willing to make the sacrifice. ;-)
We don't have the chance to hold him much - he's all tied into several tubes and wires, so moving him his a bit of a production.
When Pui and I went to dinner, his Grandma Milly stayed and held her grandson for about 45 minutes. Eventually, Pui and I went home to get some sleep. I planned to write in the blog, but it was late and I was just too tired.
This morning we arrived just too late for rounds, but there wasn't much new to learn. The main thing we learned was that Pat's bilirubin was a little high, so he had to spend most of the day under the bilirubin lamp, wearing his little designer eye shades. (What is bilirubin? It has to do with red blood cell metabolism and is what makes jaundice and some bruises yellow. I hear.) The bilirubin light is a blue light that they put over him that somehow helps lower his bilirubin level. If he was a girl, would they use a pink light? (Just kidding).
But it meant that we didn't get much of a chance to hold him today. Pui got two chances, when they were changing him and taking care of his connections and IVs. The nurse was very kind to let her hold him those times.
It appears that they are keeping Pat a little dehydrated, so that his heart has an easier time of it. He also is not allowed to eat, which is why he is being fed intravenously. That is apparently standard for Congenital Heart babies. He is slightly blue in his feet, but otherwise appears to be doing quite well. But that isn't helping him get rid of his bilirubin. They also put him on a medicine that helps his circulation, so hopefully we won't have to go back into the tent.
One thing the last two days has made clear is that Pat really does need surgery. They are working hard to keep him stable and thriving, but it clearly isn't easy - or sustainable.
My father had come down with a cold in the morning, so he didn't go to the hospital today. But my sister Katy did, and she was a huge help.
She was with Pat for something like three hours while Pui and I were able to eat, nap, take care of nursing and other needs.
Pui decided to stay at the hospital overnight, and I came home to gather food, clean clothes, and work on the blog. A Long day.
Tomorrow, Pat's case will go before the surgical and cardiological team. We'll learn what they decide the best course of action will be later in the morning or early afternoon. The uncertainty will end, and then the waiting for the surgery will begin.
Saturday morning I got paged at about 9 AM - the team wanted to install a PICC - sort of like an IV, except they run a line from an arm or a leg into a vein, and feed the line deep into the cardiovascular system. It isn't easily pulled out, and it delivers drugs and fluids deep into the system. They had been trying to install a second IV both at the UW and at Children's, but without success - Nong Pat's veins are very small and fragile. He already had several small pokes on his hands and feet, and the thought of one that would last a long time had strong appeal. They installed the PICC in his foot, and have been feeding him intravenously through it. When I was allowed back in (They didn't want me there for the PICC installation - I assumed it's a sterile procedure, what with all of that tubing going into his veins and stuff) Pat was under a little plastic tent. They had him in a low oxygen environment to help his circulation. It seems counter intuitive to me, but everyone was quite matter of fact about it. Fortunately, within a few hours they decided it wasn't needed.
The drug that is keeping him alive - Prostiglandin - has some side effects.
It makes Pat cranky, and gives him a slight temperature. His crankiness goes away when he's held, so we make the painful sacrifice of holding and cuddling our baby every chance we get. It's hard, but we're willing to make the sacrifice. ;-)We don't have the chance to hold him much - he's all tied into several tubes and wires, so moving him his a bit of a production.
When Pui and I went to dinner, his Grandma Milly stayed and held her grandson for about 45 minutes. Eventually, Pui and I went home to get some sleep. I planned to write in the blog, but it was late and I was just too tired.This morning we arrived just too late for rounds, but there wasn't much new to learn. The main thing we learned was that Pat's bilirubin was a little high, so he had to spend most of the day under the bilirubin lamp, wearing his little designer eye shades. (What is bilirubin? It has to do with red blood cell metabolism and is what makes jaundice and some bruises yellow. I hear.) The bilirubin light is a blue light that they put over him that somehow helps lower his bilirubin level. If he was a girl, would they use a pink light? (Just kidding).
But it meant that we didn't get much of a chance to hold him today. Pui got two chances, when they were changing him and taking care of his connections and IVs. The nurse was very kind to let her hold him those times.It appears that they are keeping Pat a little dehydrated, so that his heart has an easier time of it. He also is not allowed to eat, which is why he is being fed intravenously. That is apparently standard for Congenital Heart babies. He is slightly blue in his feet, but otherwise appears to be doing quite well. But that isn't helping him get rid of his bilirubin. They also put him on a medicine that helps his circulation, so hopefully we won't have to go back into the tent.
One thing the last two days has made clear is that Pat really does need surgery. They are working hard to keep him stable and thriving, but it clearly isn't easy - or sustainable.
My father had come down with a cold in the morning, so he didn't go to the hospital today. But my sister Katy did, and she was a huge help.
She was with Pat for something like three hours while Pui and I were able to eat, nap, take care of nursing and other needs.Pui decided to stay at the hospital overnight, and I came home to gather food, clean clothes, and work on the blog. A Long day.
Tomorrow, Pat's case will go before the surgical and cardiological team. We'll learn what they decide the best course of action will be later in the morning or early afternoon. The uncertainty will end, and then the waiting for the surgery will begin.
Saturday, March 7, 2009
More Pictures of Pat: Day 1 (Barely)
I couldn't sleep after saying 'goodnight' to Pat and leaving him alone in an NICU, so I put together some of the photos we took of him today and posted them here, in our Flickr site.
It was a very long day. Pui had a looong night, and began serious labor (with pushing) just before 9 AM. When noon was approaching, Pui - and everyone else in the room, but mostly Pui - was exhausted. The doctor suggested we try a vacuum or forceps. I think they were beginning to think that an emergency C-section would be needed: Pui was that exhausted from a night of hard contractions. We agreed to the forceps, and shortly before noon the room started to fill up with people. There was several people from the NICU, the team that looks over the baby, several nurses, several doctors, people all done up in scrubs (prepared for an emergency C-section, I think - I was too tired to ask). Then Dr. Sue, with Dr. Brown watching, used the forceps to pull Pat out during a contraction. Whew!
I clearly remember Pat coming out, but I can barely remember cutting the umbilical cord.
He was examined, cleaned, weighed, and handed to me. I didn't really know what to do, so I did what any good first-time father does in this situation - I handed him to his mother. Shortly after that, Pat was taken to the NICU (Neonatal Intensive Care Unit) where he had baby's first IV installed. His blood oxygen levels, pulse, and respiration rates were monitored as the Prostiglandin E - the chemical that will help keep him alive until his surgery - was introduced via Baby's first IV. Everyone who worked with him commented on how strong and healthy he was. When he was unhappy, he gave everyone a demonstration of how healthy his lungs were. And although he had bluish hands and feet at first, by 4:00 he was literally all pink.
Pui had a chance to visit Pat in the NICU twice - once about 40 minutes after birth, when she was in a wheel chair, and once about 4 hours after birth, when she walked over. The second time Pui got to nurse Pat. He didn't get any milk, but he did latch and suckle. He is truly our child - born to eat. :-)
At around 5:00 a mobile NICU unit from Children's hospital arrived, and I went with pat to the new hospital. I was exhausted and not thinking real well, so I was very glad when my Father and Sister managed to find us at the reception desk of the Children's Hospital NICU. We saw Pat situated, and talked with one of the Cardiologists. Dad and Katy went home, and I tried to sleep. But I couldn't. So I went down and said goodnight to Pat. Leaving him there alone was one of the hardest things I have ever done. But there is tomorrow, and all the tomorrows to follow.
It was a very long day. Pui had a looong night, and began serious labor (with pushing) just before 9 AM. When noon was approaching, Pui - and everyone else in the room, but mostly Pui - was exhausted. The doctor suggested we try a vacuum or forceps. I think they were beginning to think that an emergency C-section would be needed: Pui was that exhausted from a night of hard contractions. We agreed to the forceps, and shortly before noon the room started to fill up with people. There was several people from the NICU, the team that looks over the baby, several nurses, several doctors, people all done up in scrubs (prepared for an emergency C-section, I think - I was too tired to ask). Then Dr. Sue, with Dr. Brown watching, used the forceps to pull Pat out during a contraction. Whew!
I clearly remember Pat coming out, but I can barely remember cutting the umbilical cord.
He was examined, cleaned, weighed, and handed to me. I didn't really know what to do, so I did what any good first-time father does in this situation - I handed him to his mother. Shortly after that, Pat was taken to the NICU (Neonatal Intensive Care Unit) where he had baby's first IV installed. His blood oxygen levels, pulse, and respiration rates were monitored as the Prostiglandin E - the chemical that will help keep him alive until his surgery - was introduced via Baby's first IV. Everyone who worked with him commented on how strong and healthy he was. When he was unhappy, he gave everyone a demonstration of how healthy his lungs were. And although he had bluish hands and feet at first, by 4:00 he was literally all pink.
Pui had a chance to visit Pat in the NICU twice - once about 40 minutes after birth, when she was in a wheel chair, and once about 4 hours after birth, when she walked over. The second time Pui got to nurse Pat. He didn't get any milk, but he did latch and suckle. He is truly our child - born to eat. :-)
At around 5:00 a mobile NICU unit from Children's hospital arrived, and I went with pat to the new hospital. I was exhausted and not thinking real well, so I was very glad when my Father and Sister managed to find us at the reception desk of the Children's Hospital NICU. We saw Pat situated, and talked with one of the Cardiologists. Dad and Katy went home, and I tried to sleep. But I couldn't. So I went down and said goodnight to Pat. Leaving him there alone was one of the hardest things I have ever done. But there is tomorrow, and all the tomorrows to follow.
Friday, March 6, 2009
Introducing ... Patrick!
Here is Patrick about ten minutes after being born. We have some other pretty good pictures, but this one wins the initial "I LIKE that one!" contest.
Happy Birthday Pat!
Patrick Praj Mullarky was born on March 6, 2009 at 12:14 PM. his weight was 2964 g, or 6 lbs 8.4 oz,
We are delighted to welcome him into our lives.
We are delighted to welcome him into our lives.
Will we see Pat today? 39 weeks 3 days in utero
We certainly had an eventful night! At 8:30 PM, Pui was given cervadil, and in an hour some seriously uncomfortable contractions had begun. She got sick a couple of times, and lost the cervadil. The contractions became increasingly uncomfortable, almost unbearable, and by the time her 1 AM exam came she was really hurting. She was measured as dilated 4 cm, station -1. She decided she wanted an epidural, and by 2:10 AM it was in. At 2:13 AM the nurse pulled a cord off the wall, and 15 seconds later 5 more people came into the room and started busily changing her IV, rolling her on her side, giving her O2, etc. Including the Anesthesiologists, there were 8 people in the room. After 3 or 4 minutes, most of them left - it seems that sometimes the initial change the epidural makes will depress the fetal heart rate, but it usually recovers quickly when those measures are taken, and Pat's did. The epidural also had quite an impact on Pui. within minutes she was far more relaxed and smiling - two things she hadn't been in hours. At 2:45 the baby's heart rate dipped again, and Pui spent the rest of the night on O2. At 5:45, she was examined again, and it was determined that she was at 8 - 9 cm dilation.
With all of this going on, I didn't think I'd get any sleep, but I did get a little. Snored too, Pui tells me. Nothing like the Earnest support of a dear husband snoring away while she deals with being in labor to build that sacred marital bond of trust and support.
It appears likely that Pat will be born today. Perhaps before noon. I can hardly wait to celebrate his birthday!
With all of this going on, I didn't think I'd get any sleep, but I did get a little. Snored too, Pui tells me. Nothing like the Earnest support of a dear husband snoring away while she deals with being in labor to build that sacred marital bond of trust and support.
It appears likely that Pat will be born today. Perhaps before noon. I can hardly wait to celebrate his birthday!
Thursday, March 5, 2009
Goodnight - tomorrow will be eventuful!
We saw the doctors and the anaesthesiologists. Pui's cervix is fully effaced but not widely dilated yet, so she's on Cervadil (sp?) for the next 12 hours. Then they will see where she is and will probably induce labor. So there's a very real chance we'll meet Pat face to face for the first time tomorrow.
The nurses were just in here - they are going to give Pui a new, more comfy bed so she gets as much rest as possible tonight. How nice!
Now our job is to rest and get ready. It will be a tough job, but I think we may be able to meddle through.
The nurses were just in here - they are going to give Pui a new, more comfy bed so she gets as much rest as possible tonight. How nice!
Now our job is to rest and get ready. It will be a tough job, but I think we may be able to meddle through.
We're at the Hospital!
We are checked into our room at the UW Medical Center. We are in room #1 - looking out the window we can see Husky Stadium. Pui is all wired to the machine (Not wired, actually - the sensors are wireless) and appears to be having mild contractions - so mild we needed a machine to tell us she was having them. They are coming every 7 minutes or so. The nurses have been very friendly, and walked us through everything and reviewed our birth plan front to back.
We haven't seen the doctor yet, and will know more after she sees Pui.
Pat's on his way!
We haven't seen the doctor yet, and will know more after she sees Pui.
Pat's on his way!
An end to the wait? We're waiting to hear....
We talked to the floor nurse just after noon, and she told us that she expected to get us in this afternoon. She told us she'd call us when she knew a room was ready for us, so we wouldn't have to sit in the waiting room while they prepare.
Talking to someone who can tell us what's going on and demonstrate that they understand that this is an HLHS baby and they are making sure we have everything we need is very comforting and calming. Also, the comments from our friends who have been through similar situations helps quite a bit as well: Pat is really very safe right where he is now, and there's no hurry.
I'll update as I learn more.
Talking to someone who can tell us what's going on and demonstrate that they understand that this is an HLHS baby and they are making sure we have everything we need is very comforting and calming. Also, the comments from our friends who have been through similar situations helps quite a bit as well: Pat is really very safe right where he is now, and there's no hurry.
I'll update as I learn more.
Still waiting to go in. 39 weeks 2 days in utero
We called in again at 5:50 AM. The nurse I talked to said that there was one room open for emergencies, but every other room was full and we should call back at noon. That's five delays in 18 hours. Little Pat is probably quite safe right where he is, but it's been over a week now since we last saw the doctor, and we are becoming concerned: what are the parameters for the best outcome for Pat? When will delays start to become a serious problem? Can we look forward to days of "Call back in 6 hours"? Is this a teapot tempest or something to get worked up about?
I guess we're a little freaked out that what we thought was going to be the one part of this whole process that had a little control over, we in fact have no control over at all. All we can do now is wait - and keep calling. We'll call again before noon, and keep at it until we are admitted. What else is there to do?
I guess we're a little freaked out that what we thought was going to be the one part of this whole process that had a little control over, we in fact have no control over at all. All we can do now is wait - and keep calling. We'll call again before noon, and keep at it until we are admitted. What else is there to do?
Wednesday, March 4, 2009
Change of plans... 39 weeks 1 day
We were packed and all ready to go. But as the day progressed, our check-in time got later and later. 6:30 - 7:00, then 9:00, then we were told we could either wait until the middle of the night or call and get another check-in time at 6:00 tomorrow morning. We decided that a night in our own bed would be more comfortable than sitting in a waiting room all night. Apparently, this is a good time to have a kid: they just don't have enough rooms available for all the people they have coming in, so induced labors are taking a second seat. Those women are all going into labor now just to bug us. I know it. ;-)
Tonight Pui cooked up a storm - a ton of delicious food, much of which we plan to have Mom and Dad bring us while we are in the hospital. When Pui gets nervous or excited, she cooks. Me, I repack. I repacked everything. I got everything into three small bags, separated by where the bags will go: one with me, and two with Pui - one full of stuff for her and her nursing needs, and another for her and for the baby's first day: hats, booties, and a blanket Pui's been sleeping on.
Tomorrow we call the hospital again at 6 AM, and we'll see how it goes. And we'll see if any of us get much sleep tonight.
Tonight Pui cooked up a storm - a ton of delicious food, much of which we plan to have Mom and Dad bring us while we are in the hospital. When Pui gets nervous or excited, she cooks. Me, I repack. I repacked everything. I got everything into three small bags, separated by where the bags will go: one with me, and two with Pui - one full of stuff for her and her nursing needs, and another for her and for the baby's first day: hats, booties, and a blanket Pui's been sleeping on.
Tomorrow we call the hospital again at 6 AM, and we'll see how it goes. And we'll see if any of us get much sleep tonight.
Tuesday, March 3, 2009
New Friends: a normal little boy who happens to have HLHS
At the CHD Support group on Sunday we met a little boy named Alyc and his mother Amiel from Alaska. He has HLHS, just like Pat. You can get a pretty good idea of Alyc's personality - at least what we saw of it - from his picture. He was an energetic, impish, and totally charming normal 2 1/2 year-old boy.
We were delighted to meet them, and are so encouraged by Alyc it's hard to describe. They were down from Alaska to check out something that they thought might have been an alarming development, but turned out to be nothing but good news. We are just beginning to understand the worry that brought them all the way here from Alaska, and the relief everyone felt when everything was OK.
If there is anyone who has a boy about Alycs age with HLHS and would like to get in touch with him and his parents - especially if you live in Alaska - just contact me and I can get you in touch.
Getting ready: 39 weeks in utero
Tomorrow afternoon we are checking into the UW Medical Center. They will give Pui a drug to help prepare the cervix, and Thursday morning they will induce labor, if it hasn't started already. I expect they'll need to induce - Pui has shown no signs of labor yet. We take it as a good sign that Pat will be a good boy - we asked him not to come out until he was full term, and he hasn't. Once he's out and has met the world, we'll ask him to recover from surgery quickly and well.
Yesterday, our neighbor saw Pui and my parents getting into the car while I put a couple small bags into the back of the car, and jumped to the obvious conclusion. Actually, Mom and Dad treated us to a dinner at the Crab Pot. On our way out, I had grabbed our fully packed bags and put them in the car, so we would have them there ready to go. We didn't think what it might have looked like to an outside observer.
Today we did our last shopping - we went to a store that sells Thai magazines and an Asian market, the library, and a supermarket. Pui cooked up a delicious dinner - she may be 39 weeks pregnant, but she still likes to cook. I have no complaints about that whatsoever: Pui's cooking is delicious. We are now wrapping up everything we need to have ready - we will be back in Kirkland only occasionally this next month.
I will try to update the blog at least once a day for the next couple of weeks - there will be a lot happening, but I'm not sure when I'll have time and access to the Internet to blog.
Yesterday, our neighbor saw Pui and my parents getting into the car while I put a couple small bags into the back of the car, and jumped to the obvious conclusion. Actually, Mom and Dad treated us to a dinner at the Crab Pot. On our way out, I had grabbed our fully packed bags and put them in the car, so we would have them there ready to go. We didn't think what it might have looked like to an outside observer.
Today we did our last shopping - we went to a store that sells Thai magazines and an Asian market, the library, and a supermarket. Pui cooked up a delicious dinner - she may be 39 weeks pregnant, but she still likes to cook. I have no complaints about that whatsoever: Pui's cooking is delicious. We are now wrapping up everything we need to have ready - we will be back in Kirkland only occasionally this next month.
I will try to update the blog at least once a day for the next couple of weeks - there will be a lot happening, but I'm not sure when I'll have time and access to the Internet to blog.
Sunday, March 1, 2009
Support Group Visit. 38 weeks 5 days in utero
Only 4 more days! I think Pui is more than ready - being very pregnant looks very uncomfortable. Pui hasn't slept an entire night through in weeks, and her belly itches, she's sore, her back aches, and she has trouble climbing stairs. I try to comfort her as I can, and not let my relief show that it's her and not me.
Today we went to Seattle Children's Hospital and met with the Congenital Heart Disease support group they have there once a month. It was very nice for us - we had about a dozen veterans of children with all sorts of serious heart conditions telling us what we can expect, giving us useful information, practical advice, and sympathizing completely with our situation. Everyone we met there was great. We are very glad we went. I have a couple of pages of notes. If there is anyone out there in a similar situation to us, I highly recommend joining groups like this.
It's beginning to sink in that soon everything we've been hearing about and preparing for is about to begin. It's like being backstage and waiting for the curtain to rise - that last wait is the hardest part. Once the show begins you are busy working on it, and whether you shine or bomb, at least it's underway. So now we are waiting in the wings, rechecking our costumes and rehearsing our lines, just waiting for the curtain to rise.
Today we went to Seattle Children's Hospital and met with the Congenital Heart Disease support group they have there once a month. It was very nice for us - we had about a dozen veterans of children with all sorts of serious heart conditions telling us what we can expect, giving us useful information, practical advice, and sympathizing completely with our situation. Everyone we met there was great. We are very glad we went. I have a couple of pages of notes. If there is anyone out there in a similar situation to us, I highly recommend joining groups like this.
It's beginning to sink in that soon everything we've been hearing about and preparing for is about to begin. It's like being backstage and waiting for the curtain to rise - that last wait is the hardest part. Once the show begins you are busy working on it, and whether you shine or bomb, at least it's underway. So now we are waiting in the wings, rechecking our costumes and rehearsing our lines, just waiting for the curtain to rise.
Friday, February 27, 2009
This time next week..... 38 weeks 3 days in utero
This time next week we'll be parents. Quite a thought. It's not often a person can make a flat statement like that, but with an induction scheduled for next Thursday, it's pretty safe to say that Pat will be here this time next week.
I've posted a series of photos I like of Pui as her pregnancy has advanced. You can see them if you click on this link. The first one is already posted in this blog, but I think only one other one is as well - most are new.
Yesterday we got to have a peek at normal childhood stuff when we went and saw my niece's science-fair project.
I was really impressed with all of the kid's projects, though of course none of them were as nice as my niece's. She postulated that ice would melt at different rates when sitting out in the open depending on the surface it was sitting on. She made some predictions based on the hypothesis (namely, that ice on Styrofoam would melt slowest) and tested it out. Turns out, ice melts faster on Styrofoam than a piece of cloth - I would not have anticipated that. Nor would I have thought that it would take more than 2 hours for an ice cube out in the open to melt. Suddenly, those massive ice sculptures you see at parties and weddings seem a lot less transitory.
I can hardly wait until little Pat has a science fair. Though I also anticipate that he's going to have a hard time keeping his meddling father from taking over the project entirely. :-)
Today we also hung blackout drapes in our room. I was a little nervous - the last time I hung drapes (in my condo in Kirkland around 3 years ago) I totally botched the job. I had curtains hung, but I also had rows of holes - of various sizes and shapes - in the wall around them. That was bad enough - now I was going to do the same thing, only this time in a house I don't own. I drilled the holes and installed one set into a stud perfectly. But the next hole I drilled missed the stud. I had double-checked it with two different stud finders, but I still missed the stud with the drill. I decided to try another drill hole a little to the left, but as I tried to get back on the stool I was using to stand on, I lost my balance and stumbled back, hitting the wall with the drill and breaking the drill bit. I was not a happy camper - it was shaping up to be another fiasco like 3 years ago, and I still haven't heard the end of that one. We searched for the missing broken drill bit for some time, but never found it. It did give me time to calm down, and with a fresh drill bit I completed the rest of the two installations without any further problems. Whew! Putting together furniture doesn't daunt me, but ask me to hang a drape? Sheesh!
Pui and I also bought a copy of the game Guillotine, and played it this afternoon. (Don't tell anyone, but when she cleaned my clock playing the game, it was because I let her win. Really. I'm serious. I wasn't really trying. And besides, the sun was reflecting glare off the cards. It was!) We plan to bring the game with us to the hospital, to kill time when we have to wait around. Being crushed playing that game should be more entertaining than playing "I spy with my little eye..."
I've posted a series of photos I like of Pui as her pregnancy has advanced. You can see them if you click on this link. The first one is already posted in this blog, but I think only one other one is as well - most are new.
Yesterday we got to have a peek at normal childhood stuff when we went and saw my niece's science-fair project.
I was really impressed with all of the kid's projects, though of course none of them were as nice as my niece's. She postulated that ice would melt at different rates when sitting out in the open depending on the surface it was sitting on. She made some predictions based on the hypothesis (namely, that ice on Styrofoam would melt slowest) and tested it out. Turns out, ice melts faster on Styrofoam than a piece of cloth - I would not have anticipated that. Nor would I have thought that it would take more than 2 hours for an ice cube out in the open to melt. Suddenly, those massive ice sculptures you see at parties and weddings seem a lot less transitory.I can hardly wait until little Pat has a science fair. Though I also anticipate that he's going to have a hard time keeping his meddling father from taking over the project entirely. :-)
Today we also hung blackout drapes in our room. I was a little nervous - the last time I hung drapes (in my condo in Kirkland around 3 years ago) I totally botched the job. I had curtains hung, but I also had rows of holes - of various sizes and shapes - in the wall around them. That was bad enough - now I was going to do the same thing, only this time in a house I don't own. I drilled the holes and installed one set into a stud perfectly. But the next hole I drilled missed the stud. I had double-checked it with two different stud finders, but I still missed the stud with the drill. I decided to try another drill hole a little to the left, but as I tried to get back on the stool I was using to stand on, I lost my balance and stumbled back, hitting the wall with the drill and breaking the drill bit. I was not a happy camper - it was shaping up to be another fiasco like 3 years ago, and I still haven't heard the end of that one. We searched for the missing broken drill bit for some time, but never found it. It did give me time to calm down, and with a fresh drill bit I completed the rest of the two installations without any further problems. Whew! Putting together furniture doesn't daunt me, but ask me to hang a drape? Sheesh!
Pui and I also bought a copy of the game Guillotine, and played it this afternoon. (Don't tell anyone, but when she cleaned my clock playing the game, it was because I let her win. Really. I'm serious. I wasn't really trying. And besides, the sun was reflecting glare off the cards. It was!) We plan to bring the game with us to the hospital, to kill time when we have to wait around. Being crushed playing that game should be more entertaining than playing "I spy with my little eye..."
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