Big day for Maurice today! During rounds the resident suggested he is growing and seems strong enough to trial life without CPAP. CPAP is continuous positive airway pressure and keeps the airway continuously open so the lungs do not collapse on themselves. Maurice is doing all the breathing on his own and the machine just helps to keep his lungs open between breaths. If his little lungs don’t stay open he could developed something called atelectasis ( collapse of the small air sacs or alveoli) and this could lead to infection or even worse apnea and difficulty breathing.
He does not like the mask or the nasal prongs used for CPAP. We have been alternating between them to try to keep him more comfortable but he grabs them and tries to pull it off any chance he gets… but I’m not sure if he can handle breathing without it yet. The next step down is called “high flow.” Peter came off Cpap and onto high flow a week ago with no issues. Maurice is still so small so I’m concerned but I think it’s reasonable to try.
We take off his mask and he looks so comfortable. The nasal prongs for high flow are so much smaller and the pressure is not as strong. The respiratory therapist was so gentle and I was so excited for his first big graduation.
She left and I didn’t take my eyes off his monitor. A normal breathing rate is about 40-60. Maurice started breathing between 70-90. The nurse reassured me that it may just be a transitional period. I kept watching .. every time I would call her in to see it .. the number would go down a little… (it’s like he knew..) He was able to maintain a good saturation rate ( percentage of oxygen in his blood) but I could see that he had to work harder to breathe.
I waited about 5 hours. The resident came back in to check on our progress. I advised her of the status and she agreed to put him back on CPAP. My main concern is that Maurice is so little. If he has to work hard to breathe, he is going to burn too many calories and that will interfere with his growth. He just isn’t ready yet… and that’s ok.
Peter wanted some attention too today. After a few days of not much action .. the boys kicked it up a notch. They said during rounds, his night nurse discovered a “bump” on the back of his head. I held him for an hour yesterday and did not feel anything so whatever it is developed overnight. It’s half hard and half soft.. no one is sure what it is and they ordered an ultrasound. The doctors do not seem too concerned about it but of course I can’t help but conjure up a crazy differential diagnosis. We are still waiting for the official result and maybe a dermatology consult.
Overall it was a pretty good day. Peter gained 45 grams and Maurice lost 10. Nothing too significant. I’m confident in their care and as hard as it is .. had to leave before getting official results. I’ll likely call every hour until I know what it is but they reassured me if it was anything urgent or dangerous I would have already been notified.
I miss them already .. today it was a little harder to leave. Praying for some good news tomorrow xx