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Limbo Day 8 – Next Steps Revealed

Thank you to all who prayed and wished for Ryan to have a seizure. Admittedly a weird thing to thank for but the prayers and wishes worked so a thank you is well deserved.

Last night, after visiting hours, and after reposting Ryan’s live video as a blog entry, it happened…Ryan had a major tonic clinic seizure.

Cuts from hands clenching during seizure

It is difficult to say what triggered it. Ryan ate nitrates in the late morning. The doctors removed his gluten allergy so he could try eating gluten for a possible trigger. There were also some pretty good thunderstorms going on in the area. Or maybe, just maybe, Ryan had the seizure because it was time and not because it was triggered by anything he did.

We will probably never know. I’m not even sure that we care. Now we want to know the next steps. We want to know if the one seizure was enough. We want to know what the data says.

The surgeon came by this morning and said that the team is looking at all of the data and the longer they take the more data they get. He also explained that Ryan is looking at surgery towards the end of the week but it still is up in the air as to the type of surgery. They may even decide they need more probes inserted to get more information.

While the information from the surgeon was good, we really need to hear from the neurologist at this point.

The neurologist on rotation came through only to tell us they don’t know anything yet. She explained that Ryan has a complex case because while the seizures and jerks seem to come from the back left, there are similar spikes in four different points of the brain. In other words, they still can’t pinpoint the source or the type of epilepsy Ryan has.

So, what is the answer you ask? The rounding neurologist, the primary neurologist, and the surgeon conferences Ryan’s case today and decided they need to insert more probes.

Again the nerves have kicked in for both of us but at least we know what to expect now. Ryan is scheduled to have the additional probes inserted this Thursday.

If he has any seizures before Thursday’s surgery, then maybe they can cancel it and reassess what to do in these next steps. But I think we will start wait to ask again for prayers and wishes for seizures until after the surgery and not before.

Limbo Day 7 – In Ryan’s Words

Limbo day seven and hopefully the end. Ryan describes the day best himself in his live Facebook video.

Hopefully I will get a call or text in the middle of the night that Ryan had the seizure the doctors need to see.

Limbo Day 6 – Father’s Day

Today was Father’s Day. I hope that it was a better day for Ryan than it appeared to me.

There were no doctors making rounds. There was no physical or occupational therapies. There were no seizures. There was no visit from me or our son.

Ryan did get a visit from his dad. Ryan also got a video chat with our son. Ryan also had a couple donations to the Epilepsy Foundation made in his honor. Yesterday I was able to bring Ryan his gift from our son.

So, nothing to report but just to note that although Ryan spent Fathers Day in the hospital this year, the end result should give him many more with our son in the future. Happy Father’s Day to Ryan and to all

Limbo Day 5 – Hmm, Maybe Not Withdrawals?

Five days out of surgery and into Limbo. For the past three days Ryan has had off and on profuse sweating thought to be withdrawals from his medications. Now Ryan and I question whether the sweating is really caused by withdrawals.

Ryan has had constant hook up to an EEG from the probes in his brain. The EEG is monitored by people trained to detect a seizure at any time. If Ryan notices anything odd or has a myoclonic jerk, he pushes a button to tell the people monitoring him. The monitors also have a camera on Ryan to follow his every move, which further helps them to give information about any seizures or incidents.

Nothing has indicated and no one has discussed whether Ryan should push the button when his sweating episodes start. The neurologist put Ryan back on a low dose of one medication once a day in effort to stop what was thought to be withdrawal sweating. When that only helped a little bit, the neurologist upped the lower dose to twice a day. After tomorrow’s dose, the doctor intends to start tapering the medication again. Yet Ryan continues to have episodes of profuse sweating.

As Ryan and I texted each other after visiting hours tonight, I speculated as to whether his body is trying to reject the foreign probes in Ryan’s brain. Almost like a body would reject a transplant or implant.

Then I decided to search the internet (with the knowing that it is not always reliable). I was surprised to find multiple publishing’s of a 2019 article about a man who had episodes of profuse unexplained sweating episodes for three years when the doctors finally diagnosed him as having temporal lobe seizures. The article went on to say that sweating can be an aura, or sign, that a seizure is on its way.

I also found on Epilepsy.com’s Community Forum, people chatting about autonomic partial seizures that cause extreme sweating.

Sweating has never been an aura or sign of a seizure for Ryan. In fact when he and I first started dating I would get concerned because he would do activities that should cause sweating but didn’t. He seemed to have more myoclonic jerks when he didn’t sweat.

Now Ryan has probes in his brain that were placed in areas of his brain that could trigger a seizure. No one said the seizures triggered would present as they had in the past or that Ryan might start having auras he never had before.

Is this profuse sweating really withdrawals? Or maybe Ryan should start pushing the button to let the monitors mark when it starts and see if there is any change in the EEG readings. Limbo day six will bring new discussion with the neurologist.

Limbo Day 4…The Power Of Movement

No change. No movement. Day four into waiting for seizures with the information needed to move forward with the next steps to know how best to treat Ryan’s epilepsy.

Ryan’s usual trigger is sleep deprivation. However he usually is moving and going about his day to day routine without much rest in before the seizure will trigger. Here, in the hospital, he doesn’t have his usual routine and isn’t able to go too far from the bed.

Even though physical therapy didn’t come today, Ryan was able to do some stretching and squats. However, that was about it in the way of movement. He still had excessive sweating from withdrawals, which didn’t help.

Maybe tomorrow, after he has another tweak in his medications, Ryan will feel more like getting out of bed throughout the day and getting his body moving. Through the movement on lack of sleep, Ryan’s body will not get the rest it has been to prevent a seizure.

It’s been four days in limbo. With movement I would bet we will see movement. Let’s see what day five brings.

Limbo Day 3 – Progress But Not Really

Here we are the third day out from surgery. While it seemed like Ryan had some progress today, it wasn’t the kind he ultimately needs.

Yesterday ended with Ryan having withdrawal chills and sweats from the stopping of his seizure medications. Overnight did not get much better. Ryan’s sweating became constant. It was so bad the nurse had to change his gown and sheets at least twice. On top of that he was nauseous again.

By the time I got to Ryan today they were treating him with ice packs and a room temperature in the 50’s. The nurses continued to take his temperature and it was normal.

The doctors were so concerned about the withdrawal symptoms that they started Ryan back on one of his seizure medications but a very low dose. While the doctors need to see a seizure, they need to be sure it is not a withdrawal seizure but a true epilepsy related one.

It is difficult to say if it was the seizure medication he took this afternoon or if it was pure coincidence but the sweating finally stopped. Yes! Progress!

Now we need to see progress towards the next steps and surgery. The surgeon tentatively set a surgery time for tomorrow but it was unclear what type of surgery would be done because Ryan still needed to have one or more seizures. Today the surgeon said that the surgery time for tomorrow will be pushed to next week.

So that gives Ryan the weekend. He is so sleep deprived it is difficult to believe he hasn’t triggered a seizure. I speculated that maybe he needs to move around more. The physical therapist today helped Ryan to do some squats. It seems more activity like that on very little sleep should do the trick.

Whether or not he tries this, he can’t force a seizure. We never know when he will get one outside of the hospital so it won’t be any different inside the hospital. The progress needed is not there yet but it will…with patience.

Limbo Day 2 – Withdrawals

Two days out of surgery brought withdrawals for both Ryan and me. My withdrawals involved a very restless night’s sleep without Ryan at home with me. For Ryan the withdrawals were from the stopping of his epilepsy medications.

Ryan has stopped taking all of his supplements the night he got the call that the surgery was moved from February 2021 to June 15, 2020, only a week away. The doctors told him to take his last dose of Epidiolex the night before the surgery so he went into the surgery this past Monday having taken only two of his three medications. Monday night he had the two medications again. Tuesday morning the doctors reduced his dosages on the two medications. Tuesday morning was the last time he took any seizure medications.

So it should have been no surprise when I visited Ryan today. I could tell immediately that something was off but I couldn’t tell what. He even complained of feeling horrible but he couldn’t pinpoint where or why.

I thought at first that maybe he was having a tonic clinic seizure on its way. He had woken up in the middle of the night with a myoclonic jerk. He also had a myoclonic jerk when physical therapy came to get him out of bed. However, two jerks were not enough to give the doctors the information they need. Nor are they enough to be a sign of a seizure coming.

Later in the morning Ryan started saying he was cold. At first I agreed because the room was quite chilly but then Ryan got to the point where he was shivering like crazy. His temperature was normal. The room thermostat was moved to a warmer temperature. The nurse brought Ryan warm blankets.

No sooner did Ryan get warmed up when his body went the opposite direction. He was hot. He was shedding his blankets. I turned the thermostat back down.

View from Ryan’s room

It occurred to us that he was going through withdrawals. The medications he had been taking for so long that were suddenly cut off were finally leaving Ryan’s body. There’s no telling how long this withdrawal process will be but Ryan indicated in his good night call that this cycle continued after I left.

As with some withdrawals and detoxes, this too might cause Ryan to have a seizure. The nurses are concerned enough that they have asked him not to get out of bed any more tonight.

So maybe tonight he will get the seizure he needs to move on with the next phase of this process. I know he will be safe whenever it is because someone is always watching his EEG readings and watching him through the camera that follows his every move in the room.

In the meantime, I will try to get some rest despite my Ryan withdrawals. Hopefully Ryan is almost to the end of his medication withdrawals. Day two of Limbo equals withdrawals.

Limbo Day One – Waiting For Seizures

Ryan’s surgery yesterday was a success. The surgeon inserted 13 probes into Ryan’s brain. The probes are held in by “bolts” on the outside of his skull. The bolts also feed the wires to the EEG machine, which monitors Ryan’s brain activity. And now we wait…

And we wait… we wait for seizures. The seizures will help the doctors to decide whether Ryan is a candidate for surgery, an implant, or neither. The doctors would like to see at least three seizures before making any recommendations but there is always the possibility that one will give them the information they need. Also, Ryan has been presenting in the past with both focal and generalized seizures so the doctors may want to see at least one of each type.

And we wait… they have already started taking Ryan off of his medications, which should cause him to have seizures. Ryan has his last doses this morning so tonight he gets nothing in the way of seizure medications.

And we wait… while we wait Ryan has to deal with the pain from the insertion of the probes. They are giving him a variety of pain medications depending on the intensity of the pain at any given time. The pain varies by the minute.

And we wait…but at least Ryan has had a lot of company today whether he likes it or not. The nurse comes in every hour. The neurology team made rounds. The hospitalist made rounds. Ryan even had evaluations by a physical therapist, an occupational therapist, and a speech therapist. It doesn’t look like the therapists are really needed given the great physical shape Ryan made sure to get in before all of this.

And we wait…we are in a limbo anywhere from one day to two weeks to as long as it takes to have the needed seizures and get the needed information.

Surgery Day

No words can describe today. So if our followers can stick with it and handle the pictures, here is how the day went:

1:30 a.m. – I wake up and struggle to go back to sleep. The alarms are set to wake us in two hours.

3:00 – I wake up from a half sleep to hear Ryan moving around. Apparently he couldn’t sleep either. He starts his morning shower and second required body sterilization. This is for the surgery, not for COVID. He had to shower and sterilize before bed too. He was required to use clean wash clothes and towels each time. We also had to change the bed sheets before going to sleep.

3:45 – Ryan is done sanitizing but is now having myoclonic jerks. Go figure. He didn’t sleep well, is stressed, and has had to be off of his supplements all week. He takes a rescue med and his morning meds.

4:30 – We are at the hospital about a half hour early. We had our temperatures taken and received our hospital approved masks. Now we wait for someone on the surgical floor. We can’t find anyone yet. Maybe at 5:00.

5:10 – They are getting Ryan set up in the room. Once he is set up I can go back and sit with him until they take him into surgery. They have the surgery room blocked until 2:30. What?! Nine hours from now?! I realize from talking to the nurse that the whole time is not actually surgery time. Rather, they will do scans through the process to make sure everything is in place correctly. I am assured that once he goes into surgery they will call me every two hours with updates and I will get to talk to the surgeon face to face when everything is completed.

6:15 – I am finally back with Ryan in pre-op. He’s looking quite lovely with compression socks on, an IV in his arm, and betadine in his nose.

7:00 – Met the nurse who will be in the operating room. They won’t know how many needles they will use until they start. Ryan will be under anesthesia from the time he goes back to the operating room. They will still need to intubate him and do all of the other necessary prep work while he is under but will call me when procedure actually begins and then every two hours after. The best part of talking to the nurse was when she thanked Ryan for having his hair buzzed. Oh, and both of us getting warm blankets to wrap up in while we wait. Ryan and I are expecting another hour before they move him. The surgeon and anesthesiologist still need to stop by. Plus they are still waiting on the room to be ready.

8:21 – We have seen all of the doctors and they took Ryan back about 15 minutes ago. After everything this morning I had to get coffee and food (mainly coffee) to prepare me for the rest of the day. The day’s schedule is still very unknown. As we learned earlier, the amount of probes inserted will depend on what the surgeon decides at that time. In between inserting the probes, they have to scan Ryan’s head to make sure everything looks good. The whole thing could be finished as early as 11:30 (3 hours from now) or as late as 2:30 (6 hours from now). Ryan will be under anesthesia the entire time. That might be the part that scares me the most.

11:00 – I spent the past couple hours taking my mind off of things through work. I attended meetings via my computer. Even before COVID I was equipped to work on the road if needed. Today it’s coming in handy. My workmates were surprised I was in the meetings but like I said to them, “what else am I going to do? Sit in the waiting room wringing my hands until he’s out?” In the middle of my first meeting my cell phone rang with the hospital on the caller ID. It was the OR nurse apologizing that she forgot to call when they started the actual surgery. Turns out they started inserting needles/probes around 9. She reported that Ryan was doing great. Whew!

11:35 – Ryan is out of surgery. I am now waiting to talk to the surgeon to get the specifics. I won’t get to see Ryan until they transfer him to ICU. Hopefully that’s soon. I can’t wait to see him.

11:45 – That was quick…already saw the surgeon. They found places of interest from the beginning due to abnormal brain activity. Lucky number 13 needles/probes now in his brain. He will spend the next few days in ICU to monitor for a seizure. Then more decisions to be made.

1:45 p.m. – The past two hours have been spent notifying everyone of Ryan’s progress. I am overwhelmed by the support we have received. In the meantime, I am ready to see my husband! Yet I wait even longer.

2:30 – Finally was able to see Ryan. He was still in the surgery recovery and about to be moved to his room on the ICU. He will stay on the ICU while they monitor him and get the information they need. He complained of pain. He said he didn’t expect it to be so bad. Hopefully once he sleeps off the anesthesia and gets some food in his system he will feel better. I beat him to the ICU but I think he should be in and settled in his new temporary room by now. Time to go visit again.

4:05 – Poor guy. He’s in pain. He’s nauseous. He is falling asleep while trying to eat something. Given that he hasn’t eaten in about 24 hours, he would probably be better off having food in his stomach. I’m sure by tomorrow he should be feeling better. At least that’s what I keep telling both of us. I’m trying to get myself to believe it too.

5:35 – Ryan is finally sleeping. He wakes up every now and then and tells me his head isn’t hurting as much. There is not much longer for visiting hours. I’m going to hang out until he gets a chance to eat (I just ate cafeteria food for dinner). Oh, and perfect timing, his food just arrived. Once he eats I’ll head out and let him rest. Maybe I’ll get some rest too. It’s been a long day for both of us.

Keep Calm…One Day To Go

One day to go and it is all about dotting I’s and crossing T’s. Keep calm, take a breath, I’ve had to tell myself this and tell Ryan this.

Tomorrow is the big day. It’s Ryan’s brain surgery. Well, the first part of the brain surgery. The doctors will put their robotics to use by placing probes in Ryan’s brain so that they can monitor him and make some treatment decisions.

Many people have followed our story up to this point (and thank you to all of you for your support, concern, and interest). Our story through the preparations, through coronavirus, through the postponement, and currently through our one week freak out due to the surgery moving up again.

We are still faced with the unknown related to the surgery and recovery. We are also faced with issues of the still present coronavirus.

Just before the surgery was postponed due to COVID, Ryan recorded a video directed to Our son and a video directed to me. I was never able to watch either. Today, I finally watched the video for me and found it just on point today as it was three months ago.

As we finish the day with some crazy prep work ryan needs to do and prepping the rest of the household for tomorrow, I thought it only appropriate to share these videos again.

Be prepared, they are emotional but keep calm,..only one day to go.

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