Deja Vu

Well, here we are on the anniversary of Miles' heart surgery, and where ARE we? Why, at Primary Children's of course. Miles has been having a difficult time breathing for the past couple of days, but it hasn't been too terrible, so trying to make a decision about what to do wasn't very obvious. But, after 3 or 4 days of not improving and two useless doctors visits, I finally decided it was time to bring him here last night. He'd gotten pretty bad after a nap yesterday evening, and it made the decision a little easier, but I felt kind of silly when he'd drastically improved by the time that we got here. Ben met me at the emergency, and my slight embarrassment was quashed after Ben asked a doctor very directly, "Are we being wusses about this? Is this something that we should have handled at home". The doctor immediately countered, "No, you did the right thing". She explained that after days of not responding to treatment, coming to emergency is the appropriate action. She also explained that just because his oxygen levels weren't terrible that didn't mean that he didn't require emergency care. Although, technically, his levels were only borderline, he was struggling a lot because of his constricted airways, making his respirations high, along with his heartbeat, etc. She said that we shouldn't focus on numbers but more on his action/appearance. I really appreciated it because we are literally blown off every time we try to take Miles to an Urgent Care or Instacare because his oxygen levels aren't usually too awful. As usual, we've had a bevy of medical staff visit, and they have all (without prompting from the other doctor, I think) pretty much echoed what she said. Even the head of the ER came in and talked to us about how it was a good thing that we had brought him in. He had a student with him and was comparing Miles to a previous patient. He was telling her something to the effect that you could tell by his retractions, etc. that he was in more distress than the other despite his oxygen levels. Anyhow, it all made me feel much better about my motherly instincts.

After a positive reaction to the initial treatment he received last night, I was hopeful that our stay would only be overnight if we were admitted at all. Sadly, it was just a hope. Not too long after the treatment, his breathing actually got worse than when I had first brought him in, and he registered a fever, so we were sent up to a room. Funny thing. Miles calmed down, and was acting pretty good, wanting to eat my dinner. I went to give him a bite, and noticed that he looked kind of red. It was dark though, and I thought it must just be the lighting. After Ben agreeing that he did indeed look red, I asked the nurse, "Does Miles look red?" She took a look and got very surprised. My child, was indeed, bright red all over. He looked really funny (I can say that because he was acting fine). I got pictures. The doctors are pretty sure that it was just a heat rash, but heat rash plus my child's practically see-through white skin equals fluorescent red.

Albuterol and steroid treatments, along with motrin (for his fever), continued through the night. Just after I went to sleep, he was also put on oxygen to help him while he slept. I think that the intention was to just use it to compensate for the slow in oxygen intake during sleep, but he's still on it now, and it doesn't look like he'll be coming off of it anytime immediately. Today, has been a day of tests and evaluations. He's had an allergen test and a sweat chloride test for CF, along with the normal stuff (he tested positive for peri-influenza--no results on the others yet though). A dietitian, pulmonologist and speech therapist (not because his speech is bad, something to do with swallowing) have been in today. Looks like we're back to thickening his liquids. We're also having to do a calorie count, and we'll probably be adding another maintenance medication to the list. He was given an iv this morning because he hasn't been drinking, but so far they haven't had to pump anything into it. Hopefully, he'll start drinking on his own, so we don't have to.

I think that that's everything that we know at this point. I feel bad for my little Miles, and I miss my little Conan (who can't be here for obvious reasons). Thank you mom & dad and aunt Jenn for taking care of him for me.