Happy Bug!

Happy Bug!

 My happy bug is back!!

This morning when I got up, I also packed for the hospital.  Aaron had another rough night.  He was still so sad.  We've seen a small smile or two, but that's it.  No playing, no happy, just tired, lethargic, sad baby.

When we went into our regular trach/vent clinic this morning, the home vent coordinator took one look at him and said, "I don't like how he looks!"  My thoughts exactly.  We tried to figure out what was going on.  Was it ears?  Lungs? (my guess)  Neurology, as in seizures? His head circumference has increased more than the rest of his body, so that combined with the events of last week led us in that direction.

Waiting for his EEG.

An EEG was scheduled and an brain MRI as well.  He snoozed right through the EEG and we'll get those results early next week.  Then, after grabbing some lunch, we went over to radiology to wait for the MRI.  It turned out that radiology wasn't told that he is trached and vent dependent.  That, it seems, causes complications.  We need to have both a respiratory therapist and an anesthesiologist around for him to have an MRI.  So that has now been put off until next Wednesday.  BUT, while waiting, before we found out there were challenges to getting it done, he started acting better, much better.  Like one liter of oxygen better!  The RT that thought he looked so poorly that morning walked through and I called her over.  I remembered that in June, she had told me that it took 24 hours for the body to adjust to changes in the breathing.  Those changes can be weather, altitude, pollution, or, it seems, vent changes.  It had been 24 hours since I had called her and we'd changed his settings.

See, yesterday was really dicey.  So dicey that at one point, I was very close to calling 911.  He was desatting and we were using 8 liters of oxygen just to keep him close to 90%.  Deborah and I did an emergency trach change, and that seemed to help a little, so we kept watching.  But I don't think I even left his room unless she was in there.  I called up to the hospital and told C that I thought the vent settings needed help.  He was using more oxygen, his heart rate and respirations were up.  He was retracting, or using auxiliary muscles to help pull air into his lungs.  And most worrisome, when we'd suction, he'd desat way down into the low 80's and high 70's.  Given his weight, she had me increase his tidal volume, or the amount that's pushed into his lungs.  We couldn't increase the time the vent allows him to take it in, because the vent isn't that sensitive, but hoped that the increase in tidal volume would work.  So we continued to watch.  It helped enough that I wasn't calling 911, but he still had a miserable night.

HOWEVER, this afternoon, he's back!  It's like magic.  He's so happy and playful. He's turning his music on and off, sucking on his finger, and smiling, HUGE SMILES, (although not for the camera, can't seem to get that).  It's almost like when he was first trached and thought this breathing thing was so cool!  I can't tell you how wonderful and freeing it is to see him so happy.

Last casting.

On another note, we went to Shriner's on Monday and got his new casts, his last set.  These are bright green.  We haven't got them decorated yet, but they're kind of fun by themselves.  He gets them off on the 24th, and then uses braces for the next three months.  The fun part is that these are not the big, clunky ones of my generation.  These are thin, light-weight plastic with fun designs.  And we get toes back for the oxygen sensor.  Somehow, he thinks when it's on his hand that it's a toy.  Haven't been able to convince him that it's an important piece of medical equipment.  It's just too fun to chew on.

Yeah, he's a baby, my baby, and I'm so glad he's feeling better.