What Does it Take?

Today was our third attempt at a hospital admission and our third strike out. Jeff and I decided to take Coleman to DC Children's Hospital because we felt it may be too risky to care for him at home, although home is clearly where he wants to be. We thought we were headed for a direct admission by a neurologist there but arrived too early and were sent to ER where we spent the entire night. We had promised Coleman that we would not let doctors come in one after another and examine, poke and prod him like they did at MCV, because he has absolutely no threshold for pain. What is a pat on the back to you and me is like a cold slap to him. So, I literally stood guard at the door keeping folks out until we could see our admitting neurologist. ER would not admit without a workup, so there we stood circled around Coleman as he slept a sedated sleep.

Now I know it's easy from the outside looking in to say, "Why wouldn't you let the Er docs do their thing and get him admitted?", but until you have walked in our shoes and made promises to your child to protect him, especially when 75% of his anxiety is related to anyone wearing anything that even fits like a lab coat, it's hard to say what you'll do at that moment. Jeff speculates Coleman will be 16 when he forgives him (and us) for what's already happened. The real issue is it must take far more than a boy that has lost 30 pounds, can't stand or walk and has terrible anxiety to get one admitted to a hospital. But we all know enough about marketing to know it's all about insurance and who is paying what and that healthcare feels the pinch of the economy too.

The discussions around POTENTIAL admission included things like spinal tap, EEG, psychiatric evaluation, etc. The neurologist assured us that Coleman's major neuron pathways are firing, but the system is very very weak, he felt Coleman will have good potential walking recovery. We were assured his breathing function is adequate and Coleman begged of us just to take him home. We should have listened to him in the first place when he said it's just going to be the same thing, you're going to take me in the car, make me sick and they're not going to be able to help. He hit the nail on the head and I have more remorse for the 24 hours we put him through than I can write tonight. We weakened his trust in docs, in us and probably in himself.

One little humorous note, because you have to find something to laugh at when your tear ducts are thoroughly flushed. When the neurologist called Jeff and me out into the hall with his colorful bow-tie, gaggle of about 5 resident docs as well as a security guard to give us the "good news and the bad" he was just rubbing me the wrong mother's way and while I was watching his lips move but saying nearly nothing, I imagined, in my sleep deprived hypnosis, my right hand just moving autonomously up to the butt end of his bow-tie and pulling it down while my left hand caught the other end of the tie and in perfect synchronization, my hands pulled away from each other creating the "choke knot" if you will.

Tonight I'm sleeping next to Coleman and he's so exhausted and feels so used up that his words are short. He's sketching which seems to bring him some relief these days and we're going to thank God that even in our parenting-without-an-owner's-manual life, God works things the way He has planned and all the pushing, pulling, begging, bargaining and even blogging we do really doesn't change a thing... and then we'll fall asleep together with his hand in mine. What more could a mother ask for?