Clearly this blog has gone by the wayside for some time now. I try to update. I think about updates. I fail to update. But here is what I am hoping will be the mother of all updates.
Also known as "my big fat excuse for not updating for so long".
December 1st I got a phone call at work. It was Aiden. He said "I think, um, that I, um, passed out? Um, yeah. Could you, come? Now? I don't know what happened. I'm bleeding."
I got in the car and came home to find all three kids ready to give me an update and one very freaked out Aiden sitting on the couch with a bag of frozen peas on his lip. Now, I have a first aid card so I looked at the cut and thought it looked a little big. Mostly, though, I was concerned with the part where he passed out. I called a triage nurse at the VA and, after a bunch of questions, she recommended we go to the ER. So off we went to SMMC. This was a natural choice between the 2 hospitals since Aiden had just spent 4 days in the ICU for a bleeding ulcer in November in the same facility. (awesome)
The doc at the ER said he thought the passing out (syncope) was caused by a new prescription. Yes, Aiden had started a new script that day but he had been on this drug for 4 years before and it had only been 2 years since he stopped it. And he had only taken 1 pill, 4 hours before this happened. But okay, we knew. Don't take the pill. Follow up with primary care physician within a week.
We go home. Aiden already had an appointment for the 7th scheduled with his doctor so we just get on with our lives.
December 6th. It's a Tuesday. Aiden had a math final he was going to take in the proctoring center at the college. He needed the car so he was riding with me to work so he could take the car. I pull up to a stoplight. Aiden goes into full tonic-clonic seizure. (This is what we used to call grand-mal seizures. They changed the name. )
I freak out after I figure out he's not playing some seriously jacked up game. I pull over, call 911, and take him directly to SMMC. Again. On the way, he regains consciousness. He's very confused about where we are going and why. He says he is fine, even as he is still dripping spit and snot from his face. He is not yet aware of these fluids.
I pull into the ambulance bay and Aiden tries to get out of the car. Um, no. I force him to sit until the nurses come out with a wheelchair. They take him into a room and I go park the car. By the time I get into the ER with him, they have decided he is clearly a drug-addict. The inability to answer questions with any authority has NOTHING to do with him having just had a seizure. Nothing related to him having been unconscious. All they can see is that he has piercings and tattoos. He is transgendered and so he MUST be ON SOMETHING. The doctor just kept repeating "what did you take? What did you take, Ai-DEN?"
Later I found out that he ran a tox-screen to find out for himself what Ai-DEN had taken since neither he nor his "WIFE" (which is exactly how it's written in his notes in the ER report) would tell him truthfully.
After the tox screen came back, we only saw the doctor one time. He came to do an ultrasound of Aiden's heart as he was holding a steady heartbeat at 149 for about 2 hours.
He said that I clearly did not know what a seizure looked like and that I had brought A in because of a syncopal event. That there is often twitching and shaking to accompany passing out (syncope is fainting) and that I was wasting their time. He did treat the elevated heart rate with some adenosine. He discharged A with a heart rate at 99 and said we should really get in with a cardiologist as he had heard a murmur.
The next morning Aiden had an appointment with his doctor's fill-in (doc is on maternity leave). Ms. Rupe, NP, had all kinds of things to say about what was going on. She immediately told us to go home and pack a bag; we were going to Portland to the seizure clinic. She sent us to SMMC to get an MRI and had a massive plan of action in place. She also told us he cannot drink, take antidepressants, or drive (duh) until further notice.
Later that week we were told that we would go to the seizure clinic on January 5th since this wasn't that big of a deal and they were closed due to holidays and the days they were open were fully booked already. This is the first time I let myself cry about this whole thing. There was no help and I was being told that he utter and unrelenting confusion and disorientation was normal and I needed to just deal with it. Um, I AM NOT A NURSE!!
Saturday, December 10th. My birthday. Aiden dinks around all day and is very shaky and just... OFF. He decides to take a shower. I get in with him since he is so very shaky and unbalanced. I get his hair washed and rinsed. I put the shower head back in the holder and turn around just in time to catch him as he falls into a tonic clonic seizure.
I have Alex call 911 as there is NO WAY that I can get Aiden out of the tub on my own. I get his robe and some clothes in a bag and get the kids ready to go to the hospital. The EMTs help A out of the tub and take us to General hospital. After the last visit to SMMC, no way was I headed back there.
General has a great ER doc who is quite serious about fixing this. He points out that A's eyes are still seizing even after the major event is over. He does some poking and prodding and makes other parts of him seize also (feet, hands, etc). This man gives us a prescription for ativan and says to take one if any pre-seizure activity starts. Like the jerking and shaking all morning. It will help ward off any major activity. YESSS!!!!
The next morning, Aiden bounces out of bed at 6 am. He says it's time to rise and shine. He says he feels bright eyed and bushy tailed. I sense that something is very wrong. Aiden is NOT a morning person. I have never heard him say "bright eyed and bushy tailed" without saying "fucking" in front of it while mocking someone else who says it seriously.
I tell him if he wants to get out of bed, he needs to go see if Alex is awake and can babysit him; I have not showered or slept in 2 days and I am damn tired. I can't go back to sleep and as I finally drag my ass out of bed, Alex comes running in the room to say that he thinks Aiden needs one of his pills, he is jerking and shaking.
Now up to this point, none of the kids have seen a seizure. I have not heard Aiden hit the floor though so I know he's not seizing yet. I get him one of his pills and make him sit in the recliner. He starts to calm down so I tell him I am going to go to the bathroom and I will be back. I tell Alex to watch him. 2 minutes later I am peeing and hear the chair go all crazy. Alex comes running down the hall to say he thinks Aiden is having a seizure, should he call 911?
I get Aiden loaded up the car and make an executive decision that Alex is old enough to babysit a sleeping Ashley and an Annie that had come running down the hall to catch the end of the seizure show. The kids stay home this time.
We are in and out of General in 1 hour and 14 minutes. While this is record fast, it is frustrating since there was no real help. The doc this time tells me that I need to call 911 after a seizure so the EMTs can draw blood in the back of the ambulance to check for prolactin which is apparently produced in the body during a seizure but only lasts for 15 minutes in the bloodstream. Without a prolactin level, he says, no one will ever take me seriously about it being a seizure.
As a fun part, Aiden is hallucinating. A lot. He is very apologetic to the IV pole that it is not a person. He keeps seeing children sitting in and on things in the ER room. The doctor tells me this is just from the ativan and I should get used to it.
I am tired of people telling me to get used to it.
The next day, I call Ms. Rupe. She is my only ally in this. She gets us in for an EEG at SMMC. It takes 9 hours from entry to exit. I haven't been to work since the 5th. I miss work. No one seizes there.
The doctor finally gets the results from the EEG from Spokane. They didn't see anything except slow brain waves. Well, maybe that's from Aiden sleeping through the whole thing, right?
We go to Ms. Rupe the next day. She is pissed. She wants answers. I love her. She uses the F-bomb and is not shy about it. She is scattered and flustered with me and I love her. She acts how I feel and I love her.
She gets on the phone with the seizure clinic. She tells them this is unacceptable to wait until January 5th.
2 days later, we go to Portland. (I love her)
The neurologist, Dr. Motica, is patient and curious and thorough as anything I have ever seen. He leaves us in the room and watches the MRI films. He says there is a shadowy place in the right temporal lobe. The original doctor to read the films says it is old blood. They say it is benign. Dr. Motica says that they didn't run the type of contrast needed to be able to say that with any authority. He orders another MRI with epileptic protocol. And an angio-gram of the brain.
It takes a little time for us to get back into SMMC to get this MRI done. Aiden is now on anti-seizure meds (thanks, Dr. Motica) and wears a medic-alert unit ("I've fallen and I can't get up") *(Thanks Ms. Rupe.) (I love her). I go back to work.
Since the beginning of the year, Aiden has continued to have break-through seizures but they are very small. No tonic/clonic seizures. We are still a shit show but we are a more put together shit show. Finally, some sense of normalcy. I must have gotten used to it.
The cardiologist in Portland had Aiden wear a portable heart monitor for a month. They did a skype appointment where the doctor said that even though his heart rate is not normal, it is not a problem. He says Aiden is just incredibly out of shape. (I was not in on this appointment but later I point out that I am incredibly out of shape. My heart rate is not this crazy).
The second appointment with the seizure clinic came with another EEG before it. They really want to see Aiden seize on command. He fails to. Dr. Motica's NP, Collette?, tells us he wants us to come in for a week long study. It is scheduled for the last week in March (they want me there and I cannot afford to take more time off of work so this is during my spring break).
Last weekend, we went back to Portland. Why? Because SMMC screwed up the second MRI, too. So Dr. Motica had us come to his facility at OHSU and get it done by his people in his hospital his way. (I love him, too. But I don't love driving to Portland).
So yesterday he calls to tell Aiden that there is something on the new MRI from this weekend. He says it is possible that it is just an artifact or maybe Aiden moved during the scan. It is in the same place as the "benign" shadowy place from SMMC's films. They don't want to alarm us. It could be nothing. We need to go back and get it done again.
They haven't said it yet. I'm pretty sure it's going to be in Portland.
What is really fun is that with all of this appointment-ing, we still live day-to-day with reality. Reality has become that there are days when Aiden cannot sleep for anything. He tries and tries but eventually will realize there's no hope and he gives up.
There are also days where he will pass out standing up from being so tired. He describes it as narcoleptic. It seems to be true. Mid-sentence, he will just zonk out. In a restaurant, walking, it doesn't matter, he is just OUT. This week, he spent 48 hours, almost straight, in bed, asleep. But it's not sleep. It's just like dead. He cannot wake up for anything.
Half of the time I am convinced Aiden is having the world's slowest stroke. He loses words, says the wrong words, stutters more than he ever did, and gets confused about everything.
The other half of the time, I pretend like this isn't happening. I block out the part where his brain might never work right again. I ignore the neurologist having said "mental retardation". I try really hard not to think about the future. It's a scary idea.
Also, I don't talk to anyone about this. Every Monday, the ladies at work ask how Aiden is doing. I tell them the latest news and they get these looks on their faces. These looks make it hard to pretend it's not happening. I really want to not tell them anymore. But I have to talk about it with someone. I don't have time for therapy (which I'm sure I need, too). I don't have any friends or time to make any friends in Walla Walla. My friends that live so damn far away, when I talk to them, I don't want to just rag on about how awful life is. So I tell the ladies at work. And they are kind and say "oh that's awful" and then I go cry in the bathroom and then get back to work.
The kids, they have been amazing through this. They have had some behavior changes and made me want to run away... but they have also gotten used to it. They know the reality is different and we have had over 3 months from the first seizure now. (that original event on December 1st, they decided it was a seizure, too). They have adjusted as well as they can.
And poor Aiden. He has gone through all of this. Doesn't remember December at all. Has stopped asking me to tell him the story because he thinks he is stressing me out. Every time he does ask me to tell him, I do. And then a couple of days later he always tells me how this has made him consider his own mortality and that he is at peace with his life. He says he wouldn't change anything. He says he loves his life and he is happy and loves me and the kids and Walla Walla (and Ms Rupe) and our friends all strewn across the state and the country. He says he hopes that everyone knows that he loves them even when he forgets to tell them. He talks about missing his Coastie family (Leanne, Rachel, Laura, I'm talking to you guys, especially).
So, I've got a pretty good excuse for not updating very regularly but also a great reason that I should be updating regularly.
And if anyone wants to move to Walla Walla so we have some friends, I will introduce you to Ms. Rupe. You will love her!