Saturday – Sunday

I didn’t post at the end of the day yesterday because I was trying to get Daniel to go to bed at a relatively normal time in hopes of one of his typical seizures emerging. In order to make that happen I needed to be ready for bed as well, and keep the lights low. I also didn’t have any developments to share, and I was a little frustrated about that and didn’t want to write about it.

As you know, we were working with sleep deprivation Thursday and Friday nights. Thursday he slept from 12-6 and Friday he slept from 1:30-6:30. That hadn’t triggered seizures, and being deprived of sleep isn’t a guaranteed trigger for him anyway, so I asked if we could just try a normal night. Normal, however, doesn’t include having EEG leads stuck to one’s head for days on end. I’m just going to describe this for you, and I want you to try to imagine it happening on your own head if you haven’t had this done yourself before.

So, this is an EEG electrode. Before it gets stuck to your head, your head has to be prepared. Painstaking measuring and marking of your head is done, then each spot where one will be stuck is prepped with an alcohol wipe, then some abrasive creamy stuff is rubbed onto each spot to ensure a good connection. Then some goopy stuff is put in the cupped portion and the electrode is stuck to your head. To keep it in place, little pieces of gauze dipped in a terrible smelling glue are put on top of the electrode and some cold air is blown into that little hole on the top of the cupped portion of the electrode to harden the gauze and make sure it is not going to come off. (About that terrible smelling glue – when we got off the elevator on the epilepsy monitoring floor on Tuesday we immediately knew we were in the right place because we could smell the glue. It’s not a nice smell. Anytime someone new comes on the unit and gets hooked up we can smell it all over again.) The process is repeated again and again until twenty-something of these electrodes have been pasted onto your head. It looks kind of like this boy from the stock photo. After that, gauze is wrapped around your head so you look like you’re wearing a white hat. Then, you wait, go about your activities, eat and sleep. One day goes by, then another, then another. You haven’t been able to wash your hair, or take a break from having these leads on. Imagine how your hair feels when you haven’t washed it for three days. Now imagine how your hair would feel after three days with gluey patches stuck on your head. The goopy stuff in the electrodes dries out after a while and the connection isn’t great, so the EEG technicians come around and stick a probe into the hold on the end of the electrode and squirt some lotion in there. That feels better for a little while. Sometimes the technician isn’t super careful and pokes you in the head with the probe and that doesn’t feel good at all. Has the word “itch” come to mind yet? After about three days the itching gets pretty bad, but you have to keep going. Day four. Day five. The itching is about driving you insane. And you are only eight years old. And you are supposed to be having seizures, and you aren’t, and you can’t make yourself, and your parents are telling you that you have to stay there until the seizures happen. It’s very hard. Such an understatement.

Anyway, that terrible itching was the death knell to my plan for him to get to sleep at a normal time and there was lots of frantic scratching and struggling and extra meds to deal with itching were brought on board. Eventually he got to sleep around 10:30. There were several interruptions throughout the night, including the night staff talking and laughing in normal tones at the nurse’s station which is right outside our door. That caused interrupted sleep, at least for me, numerous times during the night.

The good part is that Daniel is such a charmer and people are drawn to him. His nurses love him and even ask to have him as their patient. He has one nurse, Miss Jen, who he has connected with well, and thankfully she has been on four of the days so far. One of his doctors has been a third year resident doing his pediatric epilepsy rotation. His name is Dr. Mulphur. He’s really nice and Daniel likes him a lot and he likes Daniel too. On Friday he had worked 10 days in a row. He was here on Saturday doing research and he made a point of coming in to hang out with Daniel for a little bit. This doctor has been here for a couple of Daniel’s crying times, and Daniel has reached out to him for a hug and the doctor has been so sweet to try to help Daniel work through those moments. Sadly for us, Dr. Mulphur is moving to his next rotation on Monday, but he said he would still stop by to see Daniel. His visit yesterday was a highlight of the day. There were other people coming and going yesterday which was a nice diversion and helped the day go by.

This morning began with the food service worker waking us up by barging in with a breakfast tray demanding name and birth-date with no apology. Between that and the noisy night crew I did not wake up very cheery. Honestly, at this point I am upset, frustrated, extremely tired and feeling stressed. This is very challenging and we are not getting the answers that we thought we would be getting.

Yesterday morning I encouraged Daniel to take a little nap, and I snuggled with him in his bed to help him doze off. I held his left hand in my hand so I could feel it if he started to seize, and he settled down quite quickly and we both dozed off. Suddenly the lights came on and the nurses came flying through the door. Huh? What’s happening? There were no outward presentations of a seizure, but Daniel’s brain was showing seizure activity. Later the doctor showed me that the EEG showed clear consistent seizure activity for two minutes, but I never would have known. I guess this is sort of good, but this is not the seizure activity we need to see. So we are still waiting for a seizure like what he typically has.

So, that’s pretty much all I can share at this point. I’m pretty emotional today and struggling with how things are going here. I have a lot of questions without answers. We’re not having fun even though we are trying to do fun things to pass the time. I’m feeling pretty desperate at different moments.