This post starts off in the wee hours of the morning.
At 3am, Logan woke up. He wasn’t too fussy, but was wide awake. I turned on Little Einsteins on our tablet for him and held his hand or massaged his legs. We clapped and patted to help Rocket blast off and go super fast. His face lights up every time those parts come on 🙂
At 4am, he was still awake but starting to doze. Our nurse, K, came in. He was awesome. He barely disrupted Logan while doing a full check up. Everything looked good and they switched Logan over to a normal cannula (he was on a fast flow) and dropped the oxygen to 4 liters. His stats looked great and word was we would be moved to the recovery floor today (still isolated though). After only sleeping in 2 hours increments, I pretty much gave up on sleep. I think I dozed around 5am, because I found out that at 6am they came in and lowered his oxygen again to 3.5 liters.
At 7am they lowered the oxygen to 2 liters. His stats held steady. We were still doing Tylenol suppositories and Toradol through his IV, but no longer needed morphine. I forgot to mention this in the last post, but up to this point we had not used the cough assist. His lungs sounded clear and as I have mentioned before Logan does not tolerate it well. We were concerned the stress from it might throw him into respiratory distress. I met the floor respiratory therapist and she had worked with SMA before. She agreed in this case to hold off on the cough assist unless we felt it was absolutely necessary. We suctioned him a couple of times when his throat became raspy, but she verified his lungs were still sounding clear. We did not have to suction any more after this.
We were able to start feeding him around 8:30am. Logan was so happy to see his bottle. He drank 80ml without any problems. He was a happy baby after that feeding! We burped him through the g-tube and it worked great. Yay!!!
And he was even happier at 9:45am when they decided to turn the oxygen off!!! He had a 97 oxygen saturation which is completely normal for him on room air only.
At around 1pm his oxygen saturation was staying steady at 97 and his resting rate was within normal standards. He had slept quite a bit, but they have slowed down IV fluids to almost nothing. He had been taken off of all pain meds aside from Tylenol suppositories.
After the oxygen came off, Brett left to get lunch for us. You can’t eat in PICU, which is understandable, but a huge pain when you are on the opposite side, not allowed to run, and there isn’t a nurse to watch Logan to be sure he doesn’t start stressing when I leave the room. Logan had been sleeping for about an hour when the occupational therapist came by. She asked if she could wake him. I hesitated, but said she could since he had been down for so long anyways. What a disappointment. Disappointment doesn’t even begin to cover the feeling actually. She didn’t show me anything new or anything I hadn’t been doing on a daily basis anyways. She then asked if he did tummy time. I explained no, he doesn’t tolerate it and with him being a belly breather it could hinder his breathing greatly. She seemed to understand. And then she said this gem..”You might check with the doctor to get him to start doing tummy time again. It is great to help build upper body strength.” I was dumbfounded. Besides the fact I just said, no he can’t do tummy time, it doesn’t matter because of his muscle weakness with SMA. I agreed to let the weekend OT come see him though in hopes they would be more knowledgeable.
By this point it is 2pm and a representative of Apria comes in to deliever the feeding machine and accessories. We went through Apria on this rather than our normal Cox Home Support because we wanted to have the machine to take home with us. I had been standing for over an hour, hungry, and my phone didn’t send me a txt that Brett was waiting in the lounge with my food. And I was already heated that I allowed the OT to wake Logan up for nothing. The Apria representative was very nice. She quickly showed me how to do everything. Then nurses started huddling around our room asking if I knew when we would be moved. I had no idea just that it was happening today. Finally around 2:30pm I was able to go eat lunch… oy.