And More Hospital. And More Migraine.

We got discharged Sunday, Feb 11. We cuddled in the house and I wrote my blog post. Monday morning we went to the Neurology Clinic at the hospital and saw our neurologist. She said Sam's headache was not acceptable. We had tried the nasal Dhe and it wasn't working. I drove off to school and Michael took Sam home. I had a phone call from a nurse that afternoon that we were having a direct admit the next morning for PICC line which would help Samuel tolerate the Dhe.
The next morning was crazy as we thought we had to be there at 9, but found out our arrival time was 7:30. Michael and I had not slept the night before much and were zonked. We ditched Davis at school, grabbed our bags and arrived late to the hospital. Sam was very nervous for the PICC line, (he had snuck his phone into bed the night before and GOOGLED it) but it went very well. I drove to school to teach and Michael and Sam got admitted upstairs, still in 6West,but on the other side of the hallway, LOL. Tuesday I had tech/dress for Into the Woods, so I was really busy, but as soon as it was over, I drove to the hospital. Davis had been picked up by our neighbors and they cared for him all afternoon and evening. At the hospital, Michael and I switched in the parking lot and I went in and he drove home. It was a terrible night as Samuel was very ill. We finally slept, but it wasn't pretty.
The next morning I stayed with Sam until noon when Michael and I switched again in the lobby. We had completely forgotten Valentine's for the kids, but each of us had small gifts for each other which we left out for the other to find. I rushed to school to teach. I zombie walked through the day and took Davis home for an hour before heading to the theater for opening night. More about that in a separate post, but it was wonderful!
After the show, Davis and I went home where I nursed a hot toddy, and he did homework. We both realized that evening that we had a cold, and felt really run down. Additionally, Davis was feeling really neglected and frustrated at school. We decided he could have a sick day the next day.
Thursday, we woke up and I took care of few things like paying bills and cleaning out the fridge and laundry and then I drove to school and taught all day. I picked up Davis from after care and we drove out to the hospital. We spent an hour or so as a family at the hospital and then Michael and Davis went to see my show and help with strike and I stayed the night with Sam.
His headache was steadily improving, but that evening he had a dystonic reaction to the compazine which scared us quite a bit. We took that out and went back to zofran. For the record, Sam's perfect Dhe dose works like this: PICC line with zofran pushed over the pump followed by benadryl pushed through the pump slowly (otherwise it makes him super sick), then flushed slowly through the pump. Then we wait twenty minutes and then he gets his Dhe over two hours. This is the only way to keep him from getting sick. But it works.
Friday was an inservice day and my administrator excused me so I spent the day with Sam at the hospital. Michael and Davis went to see a movie that morning as Davis really needed something special just for him. We had to cancel our Winter Park long weekend that we won with Suzy and Jason during the auction at Polo last summer. It was a bitter disappointment to us all, but especially Davis as this was going to be his only opportunity all winter to snowboard.
That afternoon we all hung out at the hospital. It was nice, but I was getting sicker and sicker and had to pretend I wasn't so that I could stay at the hospital with Sam. It's just a chest cold, but it's miserable. Samuel asked me to stay the night again and I wanted to, so I stayed and Michael took Davis home. The night went pretty well and I was grateful.
Saturday was the day we expected to go home in the morning as Sam's pain was at a low 2 and that's his normal baseline. We waited to be discharged and packed up. Unfortunately, it wasn't the case. Our own neurologist believed that sam could get all the way to zero pain and said we needed more doses until we got to zero and then one extra. I was disappointed, but I trust our neurologist and I wanted to stay and get the doses while we were there rather than having to come back again another day. Samuel was absolutely crushed and beside himself. But Sam heard all of this and claimed after his next dose that he was at a zero. We will never know if he was telling the truth. That night he had his next dose, claimed to be still at zero and was discharged. Davis and Michael had gone that morning to the lego store and bought tons of legos for Sam and an Alexa for Davis and they had spent the day playing together. I came home that evening earlier and brought all the luggage and Michael and Samuel took a Lyft after they got discharged arriving home around 11:30PM.
It felt so amazing for all of us to sleep under the same roof again in our own beds.
This morning Sam woke up with a headache.
It is such a terrible, disheartening, feeling. I called the neurologist's nurses line and got the hospital on call doctor who is an epilepsy specialist. She called Samuel's hospital team and they all seemed to think he had had enough doses. I do not think his neurologist will agree, but she is not on call. We are just giving him ibuprofen and benadryl right now and letting him be a kid. We are encouraging him to play with the neighborhood kids, run around outside as much as he can in the sunshine (with hat and sunglasses of course) and try to have some normalcy.
But we don't know what we can do about this. It's an unknown. Maybe we will be admitted. maybe this is his life. Maybe this is his life.
I'm still sick, but I'm resting today. I'm hoping I get well quick so I can face whatever is coming.
We have to get Sam well enough to go back to life and school. I can't teach if he is not in school. Michael has to travel for work. We have wonderful neighbors, but our family is far away. We just have to take it day by day until we figure it out.