The Bryan Family Sampler: 2022

Ben had a bit of a rough month in October. Let me catch you up on what happened...

He had a cluster of seizures like normal but he struggled to recover. We have had this happen in the past where the cluster of seizures stop after we give him his emergency meds but he drops into a zone of "status" where he doesn't really eat, sleep, talk or do anything except sit on the couch and stare off into oblivion. When this has happened before we've been instructed to give him a double dose of his meds and within 6-8 hours he comes out of it.

This time was different in that he was a little more with us...he was eating a little bit, sleeping a little bit and a little more interactive but still in status. We gave him the double dose 4ish days into it but he didn't seem to respond.

When it had gone on for a week I called the neurologist on call (it was a Saturday) and she suggested we bring him into the ER and hook him up to an EEG.

I called Andy who was at a Stake service project and we both felt like it was a little bit drastic but he asked me to pray about it and make the decision.

I'm going to be vulnerable here and say that I have struggled with my confidence in my ability to receive answers to prayers so this was a tall order.

I worked through it though and felt like it would be the right thing to do to take him in. I let Andy know so he came home from the service project and we got ready to drive the hour and a half to the children's hospital.

These are pictures of Matt holding Ben right before we left.

We checked into the ER and spoke with the Dr eventually. We explained everything and that the neuro had suggested we get an EEG. He agreed so after a while a tech came in and began the laborious process of connecting him to an EEG. Since Ben was still so out of it, he wasn't phased. It took about 1/2 an hour to hook him up. Their hope was to see if he was having "subclinical" seizures that we weren't seeing on the outside.

After the EEG was in place they came in and gave him a large intravenous dose of Ativan (I think) and, I kid you not, within 20-30 seconds he popped up and started talking! It was amazing how quickly he responded! He ended up being quite loud and a bit grumpy for the next little bit but eventually fell asleep.

They wanted to keep us overnight to monitor and make sure he didn't slip back into status.

They moved us upstairs to the neuro trauma unit.

Once we were all settled Andy drove back home.

We ended up having a super rough night. Ben ended up not sleeping for more than 10 minutes at a time.

He was constantly trying to get the bandages off of his head and face. He ended up rubbing patches of skin raw because of his constant clawing. He also basically pulled his IV out in his madness so they eventually just removed it. When he was awake he was upset and trying to get out of the bed and pulling at the gauze. He was so tangled up in the wires and pulling at them so much that some of the leads came off or loose and so they had to come in during the night and fix them a couple of different times. At one point the tech came in and said that at least half of the leads were off and they needed to redo the entire EEG. Oh man! I was trying to hold it together but Ben was so mad and sad thanks to the meds and I just didn't know if I could handle 30 minutes of trying to keep him still while they started over.

I ended up in tears as I pretty much begged the nurse to find out if it was absolutely necessary to put it back on. It had already been on for about 10 hours and I thought maybe they might have seen what they were needing by then. She checked and came back and said they really wanted it back on. Oh, that was not a happy time. Ben was so angry and fought so much. He was yelling/crying (kind of a growl with tears) as they reattached everything. Yet, he was also so exhausted that he would literally be growling one second and the next second be asleep. He would sleep anywhere from 30 seconds to 3 minutes and then wake up mad again. It was miserable for everyone...especially him. Finally it was done. They filled him with another large dose of medicine and he fell asleep for several hours this time. I was able to get 1.5 hours of sleep with him in his bed before I woke up at 5:30 and couldn't fall back asleep. Reflecting on the night I had just endure, I texted Andy that it had been the second worse night of my life. The first one was when Ben was a baby and was in the hospital and had a 40 minute seizure that they were trying everything they could think of to stop it without success. This was pre diagnosis so things were a little more scary and uncertain. I remember being very worried and feeling sick myself...I actually had them test me for strep while I was there because my throat was so sore. Anyway, that was probably number one and this ran a close second.

This was my view out our window.

It was Sunday morning.

I responded to a lot of texts letting people know what was going on, read my scriptures and some conference talks and then started catching up on my blog from the summer while Ben continued to sleep.

A couple came by who were part of the branch there at the hospital.

They told me about sacrament meeting and Relief Society coming up that morning and said the sacrament and blessings were available as well. I wasn't sure I could leave Ben so I asked for both. They were so kind. I was super emotional during the ordinance and as the good brother gave me and Ben our blessings. His wife asked if we had been given blankets yet and said she would bring them to us after the meetings.

I decided I would try and make it down to Relief Society and get some breakfast since Ben was still asleep and the nurse said she would stay with him. Right as I found the room where the meeting was being held I got a phone call from the nurse telling me the neurologist and his team had arrived to talk to me.

The neurologist basically confirmed they were seeing abnormal electrical activity through the EEG and the goal was to see a normal EEG before they sent us home. My thought was "who's to say his normal is not to be having abnormal electrical activity at all times?" I just didn't know how realistic it would be to wait for no seizures in order to send us home.

When I had let my good friend Karen know that Ben and I were in the hospital she told me her brother, his wife and their daughter were in the same unit. I told her I would love to meet them so her brother came and visited our room while Ben kept sleeping. We visited for a little bit and then his wife came several hours later. Their daughter has been having seizures and so she too was having a more intense EEG. They had already been there for many days and she had had one operation. A second operation was scheduled in the next couple of days. They were both so kind and it was lovely to meet them. I really appreciated their kindness.

Once Ben woke up we tried to keep him happy with his iPad and Disney+ on the t.v. He would barely acknowledge either one before turning his attention away and yelling again. Basically, he was either asleep or yelling/angry at us for 2 full days.

Sunday afternoon Merill and Nancy came and visited.

They were there for 5 hours with us. They were so sweet to stay and keep us company.

Ben was happy to see them but it didn't curb his anger.

This is the blanket the sweet sister from the branch brought up for Ben. She brought one for me as well and told us if we were still there the next day she would come visit us again.

That night, Sister Michelle Craig was coming to speak to the Institute students at the Spectrum. I was supposed to be there along side Andy as he hosted her and her husband Boyd. I was so sad I was missing it. Andy sent me a video that she recorded for me telling me she was sorry to miss meeting me but I was where I was supposed to be and maybe, when she comes to Logan again to visit her sister we could get together for lunch. It was super sweet of her to send me that message and made me feel better about missing the devotional.

Andy had decided that once he got home from the devotional and got the kids settled he would drive back down to be with us for the night. I told him it wasn't necessary but he was determined.

It was good to see him again and have him there with me. We switched off every two hours trying to sleep on the rocking chair and sleeping on the super hard couch bed. For Ben, it was a better night...he slept much easier with only a few periods of upset every so often.

That morning when a different neurologist came in with his team I brought up the goal of a normal EEG before going home and he didn't agree with that. He, like us wasn't sure that was realistic. Instead, he suggested we start weaning him off of the high dose of Ativan that he had been receiving every 4 hours and making sure he stayed stable. We liked him and are tucking his name away for when our current neurologist retires :)

We took turns trying to keep Ben happy and in the bed.

He still slept quite a bit that day.

One of the nurses had brought in a stuffed bear for Ben and it wasn't until later that I noticed the tag.

This was especially neat because when he was in the NICU as a baby the nurses there had a little tag line they kept saying about him..."Ben Ben Everyone's Friend Friend"

That afternoon, almost exactly 48 hours after the first EEG was connected, we got word that they had seen enough and it could be removed!

Oh, it was so good to get that thing off!

We helped a very unsteady little guy down the hall to the bathtub and had such a time getting all that EEG goop out of his hair.

He was still really drugged and still mostly grumpy but with most of the wires gone we were starting to feel like things were getting back to normal.

Merill and Nancy came again that evening and that allowed Andy and I to take an hour and run down to Trader Joe's and just get out for a bit.

Andy headed back home after that and Merill and Nancy stayed for another couple of hours.

Ben had a hard time falling asleep. About midnight the nurse was able to give him something stronger than Melatonin to help him sleep. That was the best night yet. He slept through the night and I was able to have a mostly solid sleep as well.

He got some time out of his bed since he had an overfull diaper and we needed to change the sheets.

I think he enjoyed the change of scenery :)

Once he got back into bed he ended up falling asleep again.

When the neurologist visited that morning with his team of approx. 8 other people he said he would feel comfortable sending us home if Ben started eating and drinking (because he really hadn't been doing either) and staying awake for longer periods of time.

That morning I called in a favor. A friend and ward member told her daughter that was working there that we were there so Mariah sent me a really kind note saying she would be happy to do anything for us while we were there. I texted her and asked if she would be able to come sit with Ben so I could go run an errand within the hospital. She was able to come about an hour later while Ben still slept. She brought food and a plant for me. She was so super sweet and kind. It was wonderful to see her!`

While she sat with him I ran down to the gift store and picked up a few things for Karen's niece. Then I went and found their room. It was neat to meet her and wish her well for her surgery later that day. She was so brave! Her parents were so sweet and welcomed me in very kindly.

I had told Merill and Nancy that Ben was still sleeping soundly, that they were probably going to send us home later that day and that I would let them know when to come (they had offered to drive us back home when we were ready). They surprised me and came around 2. Ben was still sleeping and continued to do so for at least another hour. I was trying to finish catching up on my blog so they sat there on my bed patiently. When Ben finally woke up we gave him some food and water and the nurses started the long discharge process.

We didn't leave until 5ish but we were happy to be going no matter the time of day.

Sitting in the back of the car with the setting sun shining in on me I got quite sick feeling but, luckily, I was pretty tired too so I fell asleep for part of the drive.

It felt wonderful to be home.

After Ben adjusted to being back home he was actually extra sweet and loving for the next two weeks. Seriously, it was a noticeable difference than his normal...which is already pretty darn sweet :)

It was almost like he was trying to make up for all the grumpiness in the hospital.

A couple of weeks later we had a follow up with his neurologist.

We have a plan in place for what to do if this same situation comes up again.

He also prescribed a liquid form of his rescue meds. He told us it would be cheaper than the rectal gel that we have been giving him for the last 13 years.

When I picked it up from the pharmacy it was .70 cents/dose compared to the $90/dose that we have been using. Where has this been all his life?!?!?

We had the opportunity to use it a week ago and it seemed to work great so that will be nice from here on out.

The Bryan Family Sampler

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