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