See this page for all of the posts related to our journey with craniosyntosis.
Our surgery time was at 11:30 a.m., so we had instructions to be at the hospital at 9:30 to give time for all the pre-op stuff that had to happen.
Phinehas could have his last solids (either a bottle or baby food) at 5:30 a.m. So, I woke him up at 5:15 to give him a bottle. He took it and went right back to sleep, waking around 7:00 a.m.
When he woke up, we played a bit, then gave him a bath. The hospital recommended that because it might be a few days until he would be able to take another one after surgery. Luckily, he likes baths now, so this was essentially play time for him.
We played the rest of the morning, occasionally offering him water and apple juice, which he could have until 9:30. He isn’t a big water drinker and wasn’t very hungry, so he didn’t take much.
We finished packing and left home around 9:00 a.m. The hospital told us to bring any favorite, comfort items that he might like. So we grabbed his blanket, even though he doesn’t carry it around with him or anything. It’s the closest thing to a comfort item that he has.
We checked in at the Check In desk. Jeff & I both got hospital wrist bracelets that matched what they’d put on Phinehas later. The one thing that surprised me is that the hospital asked for a deposit for the surgery. I’m guessing that this is because our insurance has a fairly large deductible (it’s a HDHP) that we’ve barely tapped into this year AND because surgery is expensive. I asked what is common and they said $250, so that’s what we paid. It wasn’t a big deal for us because we knew that our deductible is 10 times that AND because we have a HSA that it was coming out of.
They took us back into the pre-op waiting exam room. Jeff’s parents got there about that time, but only parents were allowed back in the room (it’s small). There, we met our nurse for that part of his care. They put him into a little hospital gown, took his vital signs and some medical history.
The worst part of that phase was taking blood for the bloodwork needed. Jeff & I held him down, while the nurse tried to get blood from one of his arms. She found the spot, but he didn’t bleed well at all. Blood came into the needle thing, but didn’t go anywhere. Strange. So we had to start all over (poor guy) with the other arm, which worked like a champ. A band aid and a hug later and we were okay.
Since we were at Children’s Hospital, they have a little play place that kids can go to while waiting for surgery. So we headed there and played with toys. He thought that was fun. Occasionally, the nurse would come to get us as we had several people to talk to:
- 2 different anestheologists came to talk to us and get history about Phinehas and even Jeff & I on how we’ve previously handled surgeries.
- Each of the surgeons stopped by. The neurosurgeon marked his head with a blue marker (which is still kind of there a week later!)
- A Child Life Specialist, who normally helps kids feel more comfortable with the big scary hospital. With a 1 year old, there isn’t much to do. She did give him 2 face masks to play with – one bubblegum scented and one strawberry. The goal was to see if he had a preference. He didn’t. He chewed on both equally.
- The operating room nurse stopped by as well.
They were running a little late that morning with the surgery before ours, so they didn’t come to get him until about 12:00 Noon. Taking him away was kind of uneventful. We gave him a hug and placed him on the gurney and they wheeled him away. He smiled the whole time as he didn’t think much of it. He’s at that age that, for the most part, if you smile at him, he’ll smile back even if he doesn’t know you.
Jeff & I went to the surgery waiting area. By that time, my mom got there, so the 5 of us went to the hospital cafeteria to grab lunch. Periodically, a nurse would come in to let us know the status:
- They’ve got him asleep and he did great
- Surgery just started
- Surgery is going well
- They’re closing up now
- He’s in recovery
- He’s woken up (and then later fell back asleep!)
Surgery itself took less than 2 hours (we were told to expect 2-3 hours), but it was only supposed to be 30-45 minutes after surgery until we could see him. It ended up being 1.5 hours until they were ready for us. That was mostly because they don’t have parents come back to the Recovery room. Instead, you meet them in the hallway on the way up to the Pediatric ICU floor. So, I think we were really waiting for an ICU room to be ready for him.
We met him in the hallway and he was still sleeping. His head was bandaged and he was covered by his blanket. All in all, I thought he looked great compared to what I had feared!
We rode up to the ICU floor and into our room. It was at that point that he woke up as they were transferring him from the wheelie bed to his crib. He saw me, started crying and held out his hands. They helped me pick him up (watching for all the tubes) and I just held him chest-to-chest. We stayed that way for quite a bit. He’d wake up occasionally, give a little cry, then fall back asleep.
Jeff went down to get the rest of our family. The grandparents saw him for a bit, then left to give us a chance to get settled in.
I was surprised at all the tubes in him. He had:
- A catheter (which I thought odd because they still had him in a diaper!)
- An ART line (I think it’s called – it’s basically an IV, but in his foot as it feeds directly into an artery instead of a vein. The main benefit of that one is that it feeds into a monitor that can track blood pressure real-time.)
- An IV in one of his arms.
- An IV port in one of his feet.
- Two heart monitors on his chest to measure his heart rate.
After a while, Jeff & his parents went to grab dinner, bring me back some and get our bags from the car. Normally, only 1 parent can spend the night at the hospital, but they were okay with both of us. I slept in the recliner chair and Jeff slept on the couch/bed.
The First Night
After he had been awake for a while, we gave him some water to see how he tolerated that. He did well for a while, only taking a couple of ounces. About an hour later though, he threw it up. So they ended up giving him some anti-naseau meds, assuming it was because of the anesthesia. Never happened again, so that’s probably the case.
Hospitals are well-lit and loud. And the nurses are nice, but annoying. In the ICU, they wake you up every 2 hours to take vitals, take blood, give pain meds or anti-biotics. Since he was hooked up to alot of machines that automatically measure things, they really just needed to take his temperature, which he hated and give meds.
The machines beep alot when levels go down or up too much, which happens for a variety of things. His blood pressure goes up when he stirs. His pulse goes up when he moves. I think I woke up every hour, so it wasn’t a restful sleep.
But we made it through the night!