Friday, March 23, 2007


We had Smiley Boy's one year portraits done today. He definitely lived up to his name. I've never seen him have so much fun. The photographer did a great job with him too. We've taken so many pictures of him--and it's gotten worse since we got a digital camera--but I decided it was time to get an "official" picture, so now we have one, or I should say several.

I stood by his crib and counted his breaths last night for the first time in a while. 22 per minute. That is no small miracle. When we brought him home, he was breathing 80 times per minute. I can't even imagine that now, but over nine months he's been home, his lungs have outgrown the damage from the ventilator, and his breathing has become more and more normal. God's hand again--or still.

His breathing rate caused me to be "not-so-nice" to a nurse in the pediatric ward in July. Smiley Boy had a double inguinal hernia that required surgery as soon as he was big enough. He cried constantly the first month he was home, but the doctor wanted to wait until he weighed ten pounds to do the surgery, and besides, according to him, the hernia didn't hurt. Well, many people we told that to laughed at it and said they had seen grown men cry with them, but we also had people tell us of people who had had them who said they didn't hurt. At any rate, after the surgery, SB was a different child; I think he had been in pain before.... Anyway, the doctor agreed to do the surgery early when we persuaded him that that was the only solution to the on-going crying.

Somehow, when the triage nurse took his vitals when we checked in, she wrote his breathing rate down as 40 instead of 80 (maybe she counted thirty seconds and forgot to double it, I don't know). Now SB had never breathed 40 a day in his life, and she just made an honest mistake. Well, Nurse Sue came in later in the afternoon after the surgery and, to make a long story short, insisted that he needed to be put on morphine for pain because his breathing rate was so high. She would not believe that the nurse earlier had made an error and that 80 was normal for him, and she really worked to put me on a guilt-trip--I think it's just as well that I cannot now remember all the mean things she said, but she was very pushy and wouldn't listen to anything I said.

And boy, I could have said a lot of things; I could have described the hours in the previous five months that I had spent learning about and analyzing Smiley Boy's breathing, and the hundreds of times (just since he came home in June) that I had counted his breaths. I could have gone on to explain just exactly the road we had been on since February and that she didn't have any idea what she was talking about. However, I was extremely polite in my refusal of the morphine, and once she left the room, Drason went to find Smiley Boy's nurse (Nurse Sue wasn't even our nurse) and I asked that Nurse Sue not be allowed to come back into our room.

After our wonderful experience with the staff in the NICU, neither of us was prepared for all of that. The rest of that surgery experience was interesting as well, but I hear a little boy awake from a nap, so I'll save it for another time.