5/5

Today was interesting. Ethan joined his class and was participating really well in class. While in class, I was fielding phone calls from insurance, neurology in NYC, and infectious diseases in NYC (will never get over this name). 

The infectious diseases called me to set up an appointment. This has happened before. It’s a recording saying we need to set up an appointment press 1 to hold for a receptionist. I press 1. Today it was 13 minutes I held to talk to a live person. Then that person told me there were no appointments in June available and we would have to come several days ahead of time and miss several days of work to accommodate their request. I asked what the appointment was for and the person responded with “ a follow up” appointment.

This seems to be many of our interactions with trying to coordinate appointments. It is frustrating. I know that offices only have specific time slots available and doctors are scheduled a certain way. I gave them a 3 day window, 6-7 weeks from now, to schedule within and that was unachievable. Do we even NEED this appointment? He is having no issues at this point? I have to send another email to see what this appointment will a for. It may very well tie into some of the medications Ethan is on to prevent bacterial and fungal infections.

I do find it quite a frustrating process considering many specialist offices are like this and people often refer me to another number, office or have no idea what’s going on. I have to run all the way around my ass...a couple times to get to the hole.

It is tiring to repeat the story over and over and over. I end up sending emails out. I was hoping our weeks would start to settle down a bit as we try to figure out how to juggle life outside of the medical aspect.

I also spoke to neurology in NYC and they were very concerned Ethan was not put on seizure medication. The neurologist isn’t overseeing Ethan’s case but is very familiar with his history.  She said she was going to contact the neurologist in Rochester to see if we can get that started.

Ethan still gets nervous before appointments. Some days are worse than others. Today was worse. Nervous isn’t really the most accurate word. Today for example he had school, then a home appointment for planning purposes to set up home dialysis, then we had to leave for regular dialysis (because we haven’t started training for home dialysis). Our home dialysis netting ended at 11:20 and we had to leave at 11:30 to start our trek to dialysis.

He started panicking because he didn’t know what he wanted to eat. He knew he needed to eat but every suggestion I made (for over 5 minutes) he declined. I told him I would make what ever he wanted and that he had to commit to something. I told him I could stop somewhere and get food. He started to panic as the clock was counting down to when we had to leave. As he was flipping out, one of his bandage contacts fell out. That was the straw that broke the camels back. It turned into a full on panic tantrum situation. Red alert! Red alert!

I grabbed a few things for him to eat in the car and settled him down enough to apply a new protective contact in. Luckily the eye doctor provided us with an extra pair. I popped in the new contact and again we started to leave, 20 minutes late.

This tells me I have to do a little bit better scheduling to avoid a situation where he perceives the appointments are scheduled too closely. We need to factor in eating time and plan our meals prior. Tweaking. Just more tweaking. 

Can’t wait for dialysis at strong to be over. We are burning through gas like crazy. Once we arrive, it is about a 20 minute process to be screened and to get a pass to be able to go to the 4 th floor. Then once we get up to the floor it is typically 30-60 minutes to get admitted and hooked up.  3 hours for treatment. It is such a lengthy and unsustainable process. It is draining.

After dialysis we went home. On the way home the pharmacy called and let us know Ethan’s seizure medication was called in and they did not have it in stock. It would be available for pick up tomorrow after it arrives.

We walked in the house and it smelled great.  I had dinner in the crockpot. Ethan was opening a can with the manual can opener. I was standing right next to him. He was fiddling with the can opener. I asked him if he knew how to use it. He said yes.

He continued to fiddle with it. I let it go on because I wanted him to exercise his muscles, especially in stroke hand. I didn’t want to jump in and do it for him. Then I asked him if he needed help. He said no.  Then I heard the can opener fall on the counter. I looked over and he was starting a seizure. He was still upright. I caught him and slowly laid him down. Paul helped me get him on his side. Avery called 911. She was so calm. I was proud of her.

After 3 minutes of full on seizure, we gave him the seizure rescue drug. Paul was able to get that for me.  Ethan bit his tongue pretty bad. He had some bleeding from his mouth. I know that was upsetting for Paul and Avery to see.

We all worked together as a family. I had Avery put the dogs in the garage so when the EMT’s arrived, that was a non issue. They got me a wet cool towel for his head. They got couch cushions to put under his frail bones.

The ambulance arrived super fast. After Ethan came out of the seizure he was in his post seizure fog. This is a period of time where he can follow very basic instructions like “open your eyes” but not quite “wiggle your toes”.

He gradually gains his faculties but this time it took longer. The EMT asked him the date and he couldn’t recall. He couldn’t even guess.

I had to give a history. I get like I should pull up a chair for these guys. “How much time do you have?” 

As we were preparing to transfer Ethan back to Strong, I decided to take a bag this time. Avery helped me throw together a quick bag overnight bag.

We packed the “Cece blanket”. Cece was one of the rockstar nurses from 9Tower that gave Ethan his gloriously soft blanket. It brings him comfort. We even remembered his shoes.

I rode in the ambulance with Ethan. We had to be separated for the ride due to covid rules. The ambulance team was great.

This is another setback that we hadn’t planned on. He is young and tough. He is starting on medication for seizures. He took his first dose already. 

With all the crap we deal with on a daily basis, I still enjoy the bright spots. Today I watched the birds at my bird feeder and had a warm cup of coffee.  I walked around the yard as my dogs walked themselves. I laughed at Penny chasing the frogs. I even let the dogs pretend they were going for a ride. Sometimes I just open the back of my van and let them sit in there for a few minutes and then they get out. They love it. They always seem so happy but they never even went anywhere. 

Another bright spot was discussing Avery’s off the cuff idea for opening a store to sell support stuffed animals for people to bring on job interviews with them as Ethan and I made fun of her. It was a silly, goofy conversation that resulted in much laughter. She is such a goofball.

Lastly, I am glad that Paul and Avery got to witness a seizure with me there to walk them through it. Paul was in the kitchen with us and Avery was close by as well. This was the perfect set up if he was going to have a seizure, to have everyone there so they are well versed if it happens again when I am not home.