I am very glad January is over, it was a very challenging month. While everything according to medical professionals appears to be stabilizing, we haven’t really seen this manifest in his physical recovery. Managing anxiety has been our largest challenge in January, both from Dave and from the children.
On the way home on Friday Seth made a comment about being angry that his dad went to Edmonton this summer. It was an odd comment that I needed to explore with my 5 year old child. In doing so I found out that he believed that all of this happened because his dad went to a course in Edmonton. It hurts a lot to tell a young child that this type of trauma would have happened regardless of where Dave was this summer and that it could have been much worse.
It hurts a lot to tell a young child that this type of trauma would have happened regardless of where Dave was this summer and that it could have been much worse.
Along with the anger Seth had at the situation I also found out that he thought what was happening was a secret, which to him meant that he couldn’t talk to others about what he was feeling and what was going on with his dad. I got to this one by asking if he wanted to speak to someone, without indicating that I meant an adult. Seth’s response was an immediate “yes” which made me think about how I had asked the question and then followed up. He had indicated that he wanted to talk to one of his friends in his class. Digging deeper is what clarified that he felt that all of this was a secret.
While behavior issues have been challenging with Seth over the last few weeks as he has been working through dealing with the anger, anxiety, frustration and sadness over the situation. It’s slow, but he is getting there.
Dax’s anxiety subsided after he received his report card. He was exceptionally concerned that he wasn’t doing well enough in a few subjects to make us happy. We have always told him that as long as we know he is giving his best we are happy with that effort. I had not been contacted by his teacher or anyone related to challenges or anything that would have indicated he had an issue. Dax has always been a bit anxious around report card time, but this one was quite a bit worse for multiple reasons.
I am very lucky that my kids talk to us, and that I have the tools to be able to help them work through that they are feeling even when it is a chaotic mess. With a few of the medical challenges we had in January our entire family was feeling out of sorts. On top of that Dax was feeling anxiety over his grades and his dad’s health, upcoming Health classes (sexuality – I likely embarrassed the kid by talking about it openly when I found out about that one) was creating worry.
Again, very lucky that my kids feel comfortable to sit around the table and talk about real life things like their sexuality, feelings and really everything going on around us. I know this would be, a percentage I can’t even imaging, harder if they didn’t participate in conversations, or respond to questions.
Very lucky that my kids feel comfortable to sit around the table and talk about real life things like their sexuality, feelings and really everything going on around us.
All of this came out after our last visit to the hospital in January. On January 27 Dave went back to the emergency room after having a painful seizure.
Hold on, I know that when many of you think of seizures you imaging someone falling to the ground and shaking or twitching uncontrollably, not being conscious, etc. Dave’s aren’t like that. He is conscious through the duration of them, can communicate in some fashion and is able to get himself into a safe position/space in case they become really bad and he requires additional assistance. You could call this being very self-aware or that he has auras. His seizures usually ramp up then down so that gives him time to get into a safe space. Bad that he has seizures, good that he is able to stay safe through them.
So, January 27 at 4:30pm Dave was loaded into an ambulance and back to emergency he did go. We were all home at the time (all being Gord, the kids, myself – MaryAnne arrived just as the EMT’s got there). This was both good and bad as it relates to witnessing events, being able to ensure my little people were taken care of and being in control of what was going on.
Something to remember – Emergency Dispatch has a script, specific to each different type of emergency. Yes, I got mad at them when they asked questions not related to what was happening – until I realized they likely had a script, determined what the script might be and rattled off the answers without the questions. At the time I felt that they weren’t listening, which was why I got mad. It didn’t take long for me to realize what was going on, but I did have to check my reactions.
Something to remember – Emergency Dispatch has a script.
Another thing to remember – Mondays suck if you have to go to emergency. Yes, it was exceptionally busy at Foothills Emergency. We waited for about 5 hours before he saw any other medical professionals other than the EMT’s that had to shift change while we waited.
While going to the hospital was a bad thing, we did learn something about a medication that seemed to stop the seizures for about 4 hours at a time. It is a ativan style drug and a small dosage stopped the seizures. While it’s used to treat anxiety, apparently it is also used for seizures.
They did not admit Dave to the Neurology Ward – there was no room – and things seemed to settle out over the evening with no further painful seizures. However, the seizures had returned. Doctors were fairly certain that these were breakthrough seizures (seizures that come on when a medication isn’t working properly and needs to be adjusted). This resulted in yet another medication change and an increase of another 2mg to the steriod, lovely back on 8mg per day.
Just before they were ready to discharge Dave the seizures started again, so off he went for an EEG (yes this is correct and not an EKG – nothing wrong with his heart or circulatory functions). EEG’s monitor brain electrical activity. The purpose was to ensure there wasn’t something else going on that was causing the seizures to start again.
By 6pm on January 27 we were being told that we could go home as he was again being considered “medically stable”. I really hate that term as all it means is that he’s not in life threatening condition and there isn’t much else that they can do for him in hospital. There was a plan to increase a couple of the seizure medications and to provide an emergency stop medication, Ativan, in case another painful seizure began. This was for two purposes. One to stop the pain and two to allow EMT’s to determine if he needed to be sent to Emergency in an ambulance or if he just needed to follow up with doctors to change medications.
We left the hospital at about 7pm with updated prescriptions and a bridge medication until the new medications could be obtained and went home. The kids were very excited that their dad was able to be back at home, even though there were still seizures occurring (minor as they were – mostly just facial twitching).
Over the last couple of months we did notice a trend, which Dave recognized as well. While we couldn’t fully determine what was triggering the seizures to re-occur, what we were able to identify was what had occurred prior to both major set backs. Dave had stopped resting as much as he had been. Both the December (while there’s more to that one – See Setbacks) and January events were preceded by days of intense activity and little rest. December – he went hunting and then a bunch of running around to get things to fix things in the house. January – a heavy weekend of socializing and then running around to get things to fix the house.
We learned that Dave is only able to handle a day or two of intense activity before he needs to rest a lot, and even that might be too much. Brain injuries are exceptionally challenging and require different things to heal properly. Rest is exceptionally important to the healing process for almost all types of injury, but brains seem to require more. Dave was pushing too hard too fast because we had seen such an improvement directly after surgery.
Rest is exceptionally important to the healing process for almost all types of injury, but brains seem to require more.
It’s really hard to have such a recovery and then such a dramatic set back. Dave is now taking his rest much more seriously with scheduled down time each day. So far this has been helping, but when he gets tired everything becomes impacted (and I do mean everything).
I can only hope that February is a bit kinder to us than January was as my positivism was greatly challenged in January.
The Adams-Schlag Family 