See this page for all of the posts related to our journey with craniosyntosis.
Day 1 Post-Op
For the most part, things just continued to get better after that first night. For “breakfast”, we gave him some applesauce and apple juice. He didn’t eat much – just a few spoonfuls, but we were testing the waters to make sure he didn’t throw up any more. He didn’t.
Throughout the morning, we’d offer more juice and they kept him up on his pain meds. His head was still wrapped and we still hadn’t seen his incision. For “lunch”, he had more applesauce and some mandarin orange slices. He didn’t have the energy to feed himself, so we had to put the slices directly into his mouth. Gladly done!
He still slept quite a bit, but was starting to be awake more and interact with us. That morning, we were visited by each of the surgeons, an anesthesiologist, the nursing supervisor, and the ICU attending doctor. Plenty of visitors!
In the early afternoon, they said that he was ready to go to a regular floor, so they started prepping for that. That meant the heart monitors came off, all but 1 of IVs came out, the catheter came out (that was an uncomfortable process for him as it got ‘stuck’ coming out!) and the ART line was removed. His head was still bandaged and they kept in the IV in his foot just in case it was needed later – it wasn’t actually connected to a machine or anything. It was nice for those tubes to come out – made him a little more mobile!
When we got to the regular floor, we were introduced to our nurse and her assistant. He was supposed to be on the monitors still, but the monitor in his room wasn’t working, so she left him off of that until they could get it fixed. He was still quite clingy, so he slept on me for most of the afternoon. We had some visitors, but Phinehas didn’t show much excitement.
That night wasn’t too bad. On the regular floor, they take vitals every 4 hours instead of every 2, which was nice. We got a little more rest. Again, Jeff took the couch/bed and I took the recliner. The nice thing about a regular room is that it has its own bathroom, so we were able to shower.
Day 2 Post-Op
Things continued to get better on Day 2 after surgery. The plastic surgeon, Dr. M, visited that morning and took the bandages off Phinehas’ head, so we got to see his incision for the first time. Not as scary as I thought it would be! No bruising. No major swelling either.
They were concerned about his bloodwork. His hemoglobin counts weren’t as high as they should be, so they wanted one more day in the hospital to monitor those. If they went too low (below a 6), then he might need to get a blood transfusion. He was at a 6.2. This day, he showed a lot more energy – started feeding himself and holding his own bottle. Jeff even took him to the playroom that’s on the floor to play for a little bit.
Day 3 Post-Op
They did one last blood test and although his hemoglobin went down to a 6.1, they felt that it was high enough to go home and that he wouldn’t need donated blood. We left mid-morning with instructions:
- A prescription for oral pain meds. The same thing he’d been taking in the hospital.
- A prescription for oral antibiotics. Again, the same thing he’d been taking in the hospital.
- A “cream” (more like Vaseline) to put on his head once a day after a bath or before bed. Helps the scar to heal.
- Permission to move him off the prescription pain meds onto Children’s Tylenol when we thought the time was right.
- Give him a bath daily, but don’t “dunk” his head under water. We could pour water onto the incision and rub near the incision, but not actually on the incision.
That afternoon, he just crashed. Slept for 3 hours straight. And even then, he was awake for 45 minutes, then went back to sleep. I think he was making up for lots of lost sleep in the hospital.