Friday, October 11, 2013

Doah, This Time

Just when one thinks the past is in the past, someone comes up to prove that time is simply overlapping layers. Late Sunday evening, the past, present, and future all came together for Doah, our mentally challenged son who suffers from CHARGE Syndrome and 12 other birth defects, and us, when Doah was taken to the hospital from his group home by ambulance. Doah had been vomiting blood and retaining urine. He also had a very high fever. The doctors desperately tried to reach us for permission to treat Doah, but once they found out that he was not conserved, they failed to keep us informed of progress. We learned that Doah had been sent home with Tylenol and put on bed watch at the group home by periodically calling the group home in the morning until Doah appeared.

This may seem like strange treatment but is pretty typical, in our experience, for MediCal patients in California. (Doah is too old to be insured by our policy and therefore has to be covered by MediCal, which seems to restrict doctors to caring for symptoms, not isolating causes of health problems.) A year ago, we could have lost our daughter, Noelle, who has spina bifida (including paraplegia, hydrocephalus, and epilepsy) through this kind of policy. She was ambulanced with neck pain to Salts Memorial Hospital. The ER doctor doped her up on morphine, and she was dead to the world when I arrived, checked her shunt for the hydrocephalus, and found it sluggish. I explained to the doctor how dangerous the morphine was; if Noelle had gone into acute hydrocephalus, she could have stopped breathing and simply died without being able to tell anyone she was having any problems because she was too doped up to know. I vigorously shook her out of her morphine stupor to the point that she could, struggling to semi-consciousness, communicate with me and confirm that she had a shunt malfunction. It took considerable effort (read that: bitchiness) to get the doctors to send her to Stanford for a second opinion. The Salts diagnosis: neck pain. The treatment: pain killer. The Stanford diagnosis: shunt malfunction. The treatment: surgery -- placement of a new shunt. Thank God for bitchy mothers, if I do say so myself.

So, here we are in a similar situation with Doah. Donnie (husband) managed to get us an emergency appointment with Doah's primary care physician on Thursday. I want to know what she plans to do about the presenting symptoms of urine infection & fever (my guess: urinary tract infection -- antibiotics, I dare suggest, would be more effective than Tylenol) and vomiting blood (my guess is either an ulcer -- preferable -- or esophageal damage from 30 years of gastric reflux due to a hiatal hernia, which is worrisome because it can lead to esophageal cancer). All of Doah's records -- whole boxes of them -- now exist only in my head because he has been followed by so many places and much has been archived, and we will need to build a website for him like we did for Noelle last year, so that doctors can check the details not available from local records.

Doah, in his lifetime, has presented us with exciting (as in "get it correct immediately or he dies") opportunities to learn more about health and become more directly involved with the medical profession. First, doctors gave him a 0% chance to live. Then they helped him breathe by giving him a tracheotomy. After that, they wanted to do some experimental gastroenterologic surgery, and when we refused consent because Doah was weak and losing weight and the surgery had only a 25% survival rate, the doctors went to court to get custody so that they could do the surgery against our wishes. While they were in court, I sneaked into the hospital just like in the movies and stole Doah. Donnie drove us immediately to the hospital, and I flew from Pennyslvania to Massachusetts where the doctors agreed with me. Doah thrived there, and ultimately, through my research at the medical school (I tricked my way past the ID guards), we found a doctor in Cincinnati who could save him from the subglottic stenosis that he had developed right after birth.

Doah routinely brings us episodes that we would enjoy more on television than in our lives. However, we don't call those shots, and it looks like we are smack in the middle of the next episode, like it or not.

The positive side of our very own television series is that Doah is clearly God's child. God has watched over this one: five cardiac arrests, two heart failures, an incredible number of apneic episodes when I was able to get him breathing again, my finding the only doctor in the USA who could have saved him, a pediatrician who supported me through it all (including knowing about the planned theft from Renboro Hospital years ago), and much more. As he has grown, Doah's connection with God has become clearer. Doah would know things that no one could possibly know and yet they would turn out to be true. Doah today will often say, "God told me this" or "God told me that," and those things turn out to be true, too.

I love our little mission town, and Doah does, too. The connection he seems to have to God really resonates here. I remember his first visit. He looked at me, and the first thing he said, with obvious satisfaction, was "God here." I think that says it all! And that is why, even though I have to put in the effort to force doctors to take proper care of him, I don't truly worry about Doah. He is, after all, God's child, and God takes care of him.

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