Limbo Take 2 – Day 3 – Tiring For All

I haven’t posted in the past few days. Mainly because there has been nothing to report. We have still been in waiting mode for Ryan to have another seizure to give the doctors the information they need to determine what will be done in the third surgery.

As a bit of recap, last Thursday was the second surgery from which Ryan recovered much quicker because only two additional probes were placed and they were prepared for the nausea before the surgery.

Friday was still a recovery day but more so a waiting day. In order to try to expedite things, I brought Ryan hot dogs to eat. I’m sorry to all of Ryan’s coaches, trainers, nutritional support, etc but these hot dogs were the highest in nitrates we could think of and no where as clean as Ryan would otherwise eat nevertheless, since nitrates can trigger a seizure, Ryan ate three 7-11 hot dogs. It wasn’t worth it. Nothing happened.

So Ryan sleep deprived himself that night which brings us to Saturday. I had to work so Ryan’s dad visited him for the day. As an extra bonus for me Ryan’s mom took our son to her house for the night. I had the house to myself and still no seizure on Ryan’s end.

I tried to distract myself by having a friend over for dinner. I of course kept in contact with Ryan. I couldn’t give myself a complete break when Ryan is in the hospital with no foreseeable distractions or breaks until this is done.

After a bad night’s sleep for me and a vomiting dog to tend to, I get a text from Ryan. He had an “anxiety” attack at 2 am. The way he describes it however sounds like the time when we were first working from home together and Ryan said something weird was happening and ran around the house frantic not knowing what to do. I had to finally snap him out of it and get him to lay down. We could only assume at the time that he had a seizure. (See post Working Remotely from Home at https://rocstopseizures.com/2020/03/24/working-remotely-with-epilepsy/)

So now we wait until the doctor can look at the EEG and video to let us know whether or not Ryan had a seizure last night. The answer to this question may give us an answer as to whether Ryan’s frantic attack in late March was an actual seizure.

I feel weird saying this but I really hope what happened last night was a seizure and if it was it gave the doctors the information they need to make some decisions. I know Ryan is bored and tired of being in the hospital. I can’t help him because his concentration is so poor after 23 days in the hospital, two surgeries, and possibly two seizures I am just as ready for him to be home as well. Our son is 5 years old and understands daddy is in the hospital to help figure out what’s going on in his brain. However our son does not understand why it’s taking so long. We are all so tired and ready for things to go back to normal absent Ryan’s seizures.

I’m trying not to get so tired so that I stop posting. I am just tired of posting that we have no information. Thank you to those who have been following, whether it be daily or occasionally. I hope for more regular posts with news and advancements going forward from here.