Thursday, September 03, 2009

2005 Revisited

We returned from the memorial on Sunday night to a boy who seemed to be catching a cold. By about 3:00 AM his breathing was short and he was really working for it, so I gave him some albuterol through a spacer and eventually I nebulized him to get him through to morning. Eventually he fell into a fitful sleep, breathing heavily. I took him to the doctor first thing but he started to go down hill very quickly.

Three albuterol nebs and one ambulance ride later we were in the ER at Children's with the supervising physician and a nurse that never left his side.

I truly thought we were going to lose him. I called his father and said get down here now as firmly as I dared while my son was in earshot listening to my every word. It is so hard to be calm and mom-like when you are so terrified. E's skin was paper-white. His eyes were dull and he couldn't breathe enough to talk. But I asked him to squeeze my hand and he grabbed it so tight it brought tears to my eyes. He wasn't going anywhere that day. He was staying right here on Earth where we need him. They gave him magnesium through an IV and later admitted him to the ICP or Intermediate Care Program, one step down from the ICU. There he received continuous nebulizer treatment for over 8 hours and we stayed for two nights.

The second day was his birthday and they brought him balloons and the kitchen made him a special gluten free cake. The ICP staff sang happy birthday. It's a sucky-assed place to spend your sixth birthday, but fortunately we can give him a full birthday do-over the day after he gets home with cake, ice cream and presents.

He's now in the regular unit under the care of the pulmonology team and his dad is there tonight and we're hoping he can get through until tomorrow without oxygen. The same thing happened twice in 2005 but this was much worse. Since it's followed the same pattern, we expect to be there another two nights and home by Saturday.

I have to say, Children's is much better than Cambridge for this sort of thing. Now that he's off quarantine, there's lots of stuff to do, and places to go as we wander the halls to bring up his strength. And the gluten free menu is fabulous. Not that he eats most of the stuff on it (like spaghetti and meat balls! and lasagna!) but if he wanted to he could. I was expecting 'plain chicken breast and rice!' but it's very kid friendly and good. And you can tell from the order sheet that it has been checked by more than one person to ensure that it's gluten free. They tested him for cystic fibrosis (which came back negative) which seemed excessive, but hey, I didn't go to medical school!

Kaylee is being a trooper. But she is really worried about who will take care of her with everybody scattered about like this. I spent some time tonight assuring her that she'd never be left alone no matter what happens. She wanted to sleep over at the hospital with Eric so we could all be together.

In spite of all this angst and fear... I am so grateful for my friends and family who keep asking: Do you need anything? And if I say "Yes!" they really, really meant it.


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