Day Three

It's day three, and we're hoping to be released later tonight. I don't know how likely that will be though. We definitely won't be able to go home prior to dinner, but we were told that if Miles responded well to some new medication, was able to stay off of oxygen, and drank enough that later tonight would be a possibility. That's not to say that Miles is doing poorly right now. He's doing quite well. He's in good spirits, and he took himself off oxygen last night, and they just left it off. The reason for staying is observation on new medication, and I think we're also waiting for more test results.

Right now Miles is having a Xopanex treatment every two hours. They're lessening that to every three hours today to see if it makes any difference. So far, the Xopanex hasn't really seemed to make much of a difference (that's what we were treating him with at home, and it didn't seem to help much). While he has the nebulizer mask on his oxygen levels will go up to 100, but once he finishes, it just goes right back down to what it was prior to the treatment. Who knows if it would be worse if he didn't have it though? That's why they're cutting the frequency, to see if he gets any worse. If not, sounds like he just doesn't need that medication.

After talking to a team of doctors this morning, it sounds like we're adding a couple of new medications. Since Miles has become quite the expert at taking medicine, he's going to get a big boy inhaler, like mommy and daddy. That will be nice to have something a little more portable than his nebulizer. He's also most likely going to be put on Singulair for maintenance. They'll start him on that tonight and kind of observe its effectiveness, part of the reason we'll most likely be here another night. I believe that the Singulair will be an addition to the Flovent rather than in lieu of it. Apparently, Singulair is more helpful with the allergy side of things.

Speaking of allergies, his panel has partially come back. We haven't gone over it in detail, but one of the doctors did tell us that he's pretty much allergic to everything but flamingo feathers (and I kind of don't think that was a joke). She did say that he was especially super super allergic to cats, about as bad as you can get. Sucks for him, but it's nice to have some identified triggers. The more we know, the more we can avoid.

What else is on the schedule? He's having his meals , or at least a meal, observed by a speech therapist today. It is still assumed that poor swallow reflexes are contributing to the problem. His left lung especially is almost always cloudy, and that's most likely from fluid getting in when eating. To help resolve that, we're back to thickening all of his liquids.....and I'll have to actually stick to it this time. She may also be looking at his fluid intake because he's only been drinking about half of what he should since he's been here.

I think that about covers what we know. We haven't heard anything on the CF test yet, so I can't give you anything on that. What happens with these tests is they'll collect blood or mucous or in this case sweat to be tested, but there are certain days assigned to certain tests. So, even though a test may produce relatively immediate results, the actual test may not be run the same day that the sample is collected. I think that that's the deal with the CF test. We'll certainly keep you all posted. I'm sure that he does not have CF though. I just wanted the test run, so I wouldn't consider it a possibility.

All in all, things are going well. The doctors are all working hard and do amazingly well at making you feel like yours is the only case in the hospital. It's so nice to be in a place where our concerns are taken so seriously, where they are doing all that they can to find the cause of the problem rather than just treating the symptoms. I love Primary Children's, and we are so lucky to have such a wonderful place so accessible. It's also been great to be able to have Ben here with me. He met us at the ER after work on Monday, and yesterday was his day off. Today, he was sent home (or to the hospital, I guess) after a couple hours. It's been nice for me and for Miles to be able to have him with us. It's also nice to have both parents here to talk to doctors. I just wish that Conan could be here with us. I miss my baby. I know that it's best for a one month old to not be around a bunch of sickies though.