Monday evening he ran down again and when I checked him his fever was 105. Horrified I gave him more Tylenol and a warm bath and quickly had his fever back down to 100.
We began a religious program of Motrin every 6 hours. Tuesday and Wednesday, he continued to run a fever, but the medicines seemed to be working. On Thursday he developed a bad cough, and it was obvious the cough was painful for him. We ran to the store and got cough medicines for him as well, so he could rest. Friday his cough worsened, and we decided that Saturday morning if he wasn't improved we would take him back to the Doctor's.
Saturday morning at the Doctor's, they again listened to his chest and didn't hear anything particularly abnormal, but they gave him a pulse oxygen check because of his obvious distress. His pulse-ox came back 88%, a normal reading is 100%, and 95% is considered the cut off, so they sent us to the Beth Israel ER.
At the ER they again listened to his chest and didn't hear too much, but when the X-Ray came back, his left lung was totally filled with a pneumonia. The rape of his dignity began in the ER when they tried to put an IV in. His veins were weak and it took 5 attempts before they got a line in. They started Vancomycin, which is a very strong antibiotic and sent him for a cat scan.
The cat scan showed some fluid as well as some as the pneumonia in his lung. After a bunch of waffling they decided they did not want to do a surgical procedure to remove the fluid. At the time, I remember being relieved.
After the cat Scan we went to the pediatric intensive care unit. Jait's IV wasn't working well, so they put a central line into a vein in his groin. He was given a sedative, but even so, we could hear his cries down the hall. After the line was in, I came back into his room, and watched them put a tube through his nose and down into his stomach. This tube was used to empty air out of his stomach to ease his breathing.
Those who knew Jait knew how strong and stubborn he was. It was a constant battle to keep the tube in his nose and the mask on his face. At this point we knew how seriously ill he was, and that we were in for a long fight. Siri stayed with him the first night, and I went home to prepare myself and to try and get some rest.
When I got back in the morning he had managed to pull the tube out of his nose, but he was looking better. He was feeling better, and kept reciting the long list of things he wanted. Cookies, milk, water, fruit, etc... None of which we were allowed to give him. It was heartbreaking to sit with him, having him ask for such simple things and not being able to do anything for him.
Siri told me that during the night they needed to take a nasal swab, which was very uncomfortable for him. While they held his head and tried to spray saline into his nose, he kept crying out, "all done. all done."
It had been a long hard night without him sleeping at all, and Siri went home to recover. I spent the day with him. If I stood by his bed and ran my fingers through his hair it helped him to relax and sleep. Around midday he was looking so good that I was finally able to give him water. It was such a tremendous relief to be able to do something to help him, and he sucked cup after cup dry.
He was still running a fever, so most of the time he had a light inflatable blanket over him through which they blew cool air. This also seemed to comfort him. I stood with him, holding his head and talking to him. "Mess," he told me, "mess, mess!" I looked under the blanket and he was covered with blood, he had pulled the central line out.
I got my last chance to hold him, while they cleaned the bed. I tried to hold him and nuzzle him the way we normally do, but the oxygen mask kept getting in the way. I pressed him awkwardly to my chest and he had diarrhea, making it even harder to give him some affection and comfort while trying to keep the poop out of anything sterile. My last hug.
They needed to put a new central line in, but because his breathing was so labored, they were afraid to use a sedative. They had to put a line in using just a local anesthetic, and then they were forced to restrain his hands to make sure that he didn't pull the line out.
After the line was in they told me that the most recent tests showed that his kidneys were having trouble and were in danger of failing. We made plans to transfer him to Cornell Medical center where they could provide a higher level of care, and dialysis if needed.
Because of the kidney problems, they needed to put a catheter in to collect and analyze his urine. I held his head, and tried to get him to relax while they did the procedure. "Daddy's here, daddy's here" I kept telling him.
Siri got back while we were finalizing the plans for the transfer. We took him down to the ambulance, and he got his last taste of fresh air. "Siren truck" he kept saying as we put him in the Ambulance. As usual he was very excited about every new experience.
At Cornell we again had to tell the whole story of his illness, but it was at least comforting to know we were now in the best facility available. They considered putting him on a ventilator at this point, but first they tried a new kind of breathing mask. This one strapped onto his head and forced oxygen into his lungs. He seemed to respond well, and his vitals improved. Most of all, he was just too exhausted to fight the mask much.
We took turns through the night, one of us resting on the couch next to the bead, the other holding his head, comforting him, and making sure he didn't pull any of his tubes out, or yank the breathing mask off.
He was desperate for something in his mouth at this point. Almost chanting the list of things he liked to eat. "Two! milk, two! cookie" he kept telling me. He was back on the normal mask now, and would bite it and lick it trying to get at the condensation. Finally they allowed me to give him some ice chips and he would say "ahh baak (open mouth)" and open his mouth like a baby sparrow while I spooned him some chips.
We had an as nice as possible afternoon together, the ice chips relaxed him, and he was feeling well enough that I could read to him. I got out one of his books and he pointed out to me all of this favorite things in the pictures. "Airplane! Big Truck! Big shovel!"
Siri game back in the afternoon, an I left to get some rest feeling good about things. They called me 5 minutes into my nap and said that his vitals were getting worse, especially his kidney signs and that they needed to do something to help his breathing. They were going to do an ultrasound on his chest, if it was clear fluid they would drain it in the ICU, if it wasn't clear they would have to drain it in the ER, if neither of these helped his breathing he would need to go on the ventilator. I immediately went back to the hospital terrified of what I would find when I got there.
When I arrived Siri was a wreck. Jait had been distressed all afternoon. He was back on the uncomfortable mask, he was manically asking for things, and trying to rip the mask off, the afternoon had been an endless struggle of trying to control him and do the procedures, the ultrasound, and a new catheter. Most heartbreaking of all, he desperately wanted Siri to hold him, which she wasn't allowed to do.
The ultrasound show clear fluids so they made plans to put in a chest tube in the ICU to drain the fluid.
The plan was to give him a low dose of verced to relax him while they prepared for the procedure, and then give him ketamine to put him out while the tube went in. They told us all the meds were designed not to interfere with his breathing, and I rumpled his hair with one hand while I signed the consent with the other, relieved that we were doing the minimally invasive procedure.
They ushered us out of the room as they prepared the verced and we waited in a lounge, terrified and crying. The procedure was to be short, so after we waiting 30 minutes I knew something hadn't gone well, and I assumed his breathing wasn't good so they had had to put him in the ventilator.
An aid came and took us to a private room. One of the Dr's came in and told us that right after they put the verced in, his heart had stopped. They were taking extreme measures to try and save him, but he was showing no response.
Another 30 minutes passed and they came and told us he was gone. After his heart stopped, he never show any electrical activity. During the attempts to revive him, he showed signs of massive internal bleeding and all sorts of other problems. The verced was meant to relax him, and I think he just slipped away weary from the fight so strong that he was.
They cleaned him, up and allowed us to see him. He had a smile on his face and looked peaceful, cherubic, the way I remember him. Not the images I have stuck in my mind from the worst three days of my life.
Of course, even today no one really understands what happened. What Jait died of is called atypical hemolytic uremic syndrome (aHUS), a very rare complication of streptococcus pneumonia. There is no web page, no entry in Wikipedia, no support group, no fund raisers looking for a cure. If you Google it you'll find a handful of academic papers, most doing statistical analysis on patient records, trying to correlate the course of the disease and it's treatments.
Hemolytic uremic syndrome (HUS), is what you can develop after an E. coli infection from bad food. It is basically a mechanical reaction where the blood begins to break itself down. Atypical HUS is HUS that doesn't come from E. coli, but mostly seems to refer to a genetic malady that leads to a critical chronic health problem.
Atypical hemolytic uremic syndrome (aHUS) from strep pneumonia, what Jait had, just doesn't seem to happen enough to grab the attention. By the end, his blood was so muddled that even at autopsy there wasn't anything clear to look for.
What they think happened is that something ramped the hemolysis (break down of blood) in his body up to a catastrophic level, almost as if a bomb went off in his blood. When blood breaks down it releases potassium, a chemical they use to stop the heart for surgery.
The death of a child is an indescribable event in someone's life. The agony of receiving the news is imaginable, the torture that follows is not. The grief comes in overlapping and interlocking waves. Grief for Jait. Grief for my wife. Grief for my parents. Grieving over my parents grieving for me. Siri and I have been fortunate that our highs and lows have in mostly different rhythms and we've been able to support each other.
Even now after a long time has passed the grief still comes over me like a physical blow. I collapse and cry.
Take the coroners early morning phone call.
Plan the service.
Explain the basics of what happened to the building staff, the grocery store, the other places where he will be missed and Siri doesn't need to be asked why.
Put a glass down on the table and realize it's too close to the table's edge, within reach of little hands. Move the glass back even though there are no more little hands?
Close the child gate?
On father's day, am I still a father?
Feel guilty about laughing, about enjoying anything.
When Siri is out, I curl up in his closet and pull all his clothes down onto me and try to breathe a hint of his scent.
And cry, and cry, and cry, until even the tears hurt.
Our pediatrician from California has been a tremendous help in our learning to cope. He pointed out to me that losing a child in the way that we did, one imponderable piled on another, one statistical anomaly after another. Is, in a way, more difficult than losing a child, in a car accident, or in a moment of inattentiveness at a swimming pool. There is nothing, or at least nothing meaningful for us to do better in a next time. When you have been the 1 in the "1 out of a million" there is no solace in statistics, no protection in numbers. How do you live your life knowing that the 1 in X people who get hit crossing the street is you. And you can never forget.
Siri and I both develop our own rituals in caring for Jait's spirit. Another doctor pointed out to me that Thai culture is in many ways better adapted than ours to dealing with the death of a child.
Every night a go into his room, and stand over his bed in the place I promised him countless times I would take care of him. I tell him how sorry I am that I failed. I go to his dresser and rearrange all the decorations, change the position on the toy crane he never got to play with. Then I turn his urn, and kiss the alter on which it rests. Trying to give the illusion of activity in a room of empty.
Jait, daddy misses you.