Thursday, October 6, 2011

Still No Answers

Wednesday, October 5
7:00 p.m.  Labs and x-rays are coming back.  So far it’s looking pretty good.  Everything is negative so far, and we’re just waiting for trach cultures, the virus panel, and the blood and urine cultures.  But his fever is going higher, 38.5.  So we’re still heading to the PICU. 

10/6/11  3:15 a.m.  Well, I told Aaron that if this was a big deal, he needed to perform.  He took me at my word.  Until about 2 a.m., we had no clues.   He looked much too good to be in the hospital, let alone the PICU.  I’m not sure what, if anything really, started it off, but he did done good.  Heart rate soared, respiratory retractions and oxygen needs skyrocketed, coughs (unproductive) shook his little body.  And his eyes were twitchy, very twitchy.  Called the resident and they pulled more x-rays and labs.  Nothing.  Now they’re thinking maybe seizures. 

I’m not liking this, really not liking this.  Please give me strength.    A friend wrote a blog some time ago about “at least it’s not ______”.  That’s how I feel about seizures.  But if it is, I guess we’ll just pick ourselves up and move on.  Because at least it’s not ?????, I don’t know. 

5:00 a.m.  Fever’s going higher, even with Tylenol.  He’s up to 39.1.  He’s still very high on his oxygen.  Poor baby is really restless.  We’ve put a cool cloth on his forehead and he seems to like it.  He’s calming down.  Maybe he’ll sleep?  I slept from about midnight until 2:15.  Trying to work now, because I know I’ll be useless later.

2:00 p.m.  He’s back to behaving.  The day team felt like they didn’t have enough to go on to call neurology, so they’re not involved, at least not yet.  The resident in rounds said they thought it was viral pneumonia based on his x-rays.  I suggested that they look at previous x-rays as well, because they look the same as always.  I know most kids don't look like this, but they're typical Aaron lungs.  After reviewing it, he agreed.  I really don't think it's pneumonia.  It just doesn't look like it.
We gave him Motrin at 5:30 to help with the fever and it did work.  He’s been calm and either playful or sleeping since then.  I wish we had some answers.  I’m concerned that once the Motrin wears off all the way, we’ll back to struggling again.  So the plan is to keep watching until somewhere between 4:00 and 6:00 and then re-evaluate.  If he’s still doing well, we’ll probably end up on the floor.  If this is something, I really need him to show the team. 

I think, given his T18 diagnosis, that it’s perfectly reasonable to get neurology involved.  Dr. Carey recommends that all our kiddos be evaluated by them and receive an EEG.  But I really don’t want to have to turn into Mama Bear.  I want him to show them what needs to happen.  Besides, an EEG when he’s doing well won’t show anything at all.  I have to admit, it's kind of wierd to see doctors and nurses and have them ask why we're here, and have to say, "I don't know!"  Really, really wish we had some answers.

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