Level Up: When your Medically Complex Child decides it's time for an upgrade on your education!! Introducing...Epilepsy.

I began writing a facebook update today for our incredible network of people who love and support us, and realized this is not a quick update! This is a new branch to our pathway and literally as I write this our young warrior is being sedated and going for testing that will hopefully give us some answers - for this particular weekend and/or for his lifetime. It is Friday afternoon just before shift change and I am eternally grateful for his day nurse (and the many doctors behind the scenes) who have been moving mountains to make this next test happen today.

This past week has been a good one, with nothing unusual or different. William fell asleep easily and two hours later when his sat monitor (which continually monitors his oxygen levels and heart rate) went off, I assumed it was because he had pulled off the tube providing extra oxygen through his trach in his sleep - which he does easily and frequently.

Looking over the side of his bed I was shocked to find him all out convulsing, not able to breath or snap out of it. His body was out of control in a very rhythmic and terrifying way. I called for Dad and together we got to work. We cleared everything out of the way that he could hurt himself on, tried clearing his airway and increasing the oxygen, got phone support from his medical team when he seemed to be easing out of it and then called 911 when it took a turn for the worse. We captured videos to be able to show the experts and cleared a path for the emergency services that were rushing to help us. When going back and piecing everything together, we have figured out it was between 40 and 45 minutes long before he came out of it. He was given a dose of Midazolam and that helped end the seizure and get him stable enough for transport.

Thankfully the paramedics agreed to let me go with him in the ambulance but could not transport him out of town to his children's hospital as he was not yet stable enough for the 45 minute drive. (Going to this local hospital is hard, as it is where this journey began 6 years ago with a traumatic birth upstairs.) Both paramedics and emergency department personnel were amazing for letting me get involved and literally saying several times that I was the expert when it came to him and that they were grateful for my help and knowledge as it made their job more effective. They did agree that he needed to get to his children's hospital where they are more prepared to handle someone like him.

Two hours after his first seizure, William had another which presented completely differently. He was given Ativan and this one lasted only a few minutes. One hour later a large dose of Keppra was administered to try and stop more seizures from happening, though he did have one last one 12 minutes later, again only a few minutes in length. At this point he was not responsive to us and got very cold. We put four warming blankets on him, I curled up with him for body heat, and they put warming lights on him. He also was on his ventilator that Dad had brought over with him.

We learned that the alarms beeping off on his vent were because he was not breathing on his own anymore. Between the medications and the exhaustion his body had from all the seizures, the machine took over and did the work for him. This was the first time the vent has had to do this for him as usually he uses the vent at night to push him to take deeper and bigger breaths; basically because he likes to cheat the system and take shallow breaths that are long - but not big enough to clear out all the C02 in his lungs. When healthy though, he is the one initiating all the breaths and the machine is just there kind of like Mom reminding kids to brush all the teeth in your mouth - it pushes him to take a deeper bigger breath!

Four hours after this all began, the children's hospital team arrived and rolled a transport stretcher right into his emergency room. The relief to see familiar faces is beyond anything I can explain. There was no need to explain backstory or his norm; they just knew and my shoulders felt a little lighter. There was no response from him as we got him ready to go on our second ambulance ride together. It felt somewhat surreal being with him on this ambulance ride as the last time we took this same trip, we did it separately and were both in horrific state. It was good to take the journey with familiar faces and a stabilized boy, even though he was completely unconscious with machines breathing for him.

Most of the next day, yesterday, was pretty rough as he was out of it. He tried to stir a few times but just kept getting pulled under his medicated and post-seizure exhaustion phase. It was agonizing to wait as we didn't know if he would be affected cognitively since the first seizure was so long, but thankfully today he has come around and is almost back to normal, not quite but so much more alert and aware...and definitely more feisty.

TESTING: To share with other newbie parents entering into the world of Epilepsy, here is what we have experienced so far in regards to testing.

1. Thorough blood work, swabs, sputum samples, etc taken and sent for testing to rule out infections, abnormal sodium or sugar levels, etc. (for us, all of these came back normal and helped rule out a lot of possible causes for the onset of the seizures).

2. Questioning of parents and home nursing staff for anything out of the norm (ruling out exposure to things etc.)

3. EEG - William was hooked up for 24 hours to an EEG machine that monitored his brain waves and watched for any signs of seizures. This was really helpful actually for me as there were two times in particular where I was wondering if what I was seeing might be a sign there was a small seizure going on and we were able to rule them out and mark it down to his tone and dystonia. This EEG was also really important as even though it did not capture any further seizures, they were able to compare it to one he had done in December of 2022. The difference was clear and did confirm it was wise to move on to the next test and that he is now at risk for more seizures. As a result of this he will continue taking keppra to reduce that risk and will be going home with rescue meds and a seizure protocol (more about that when we know it).
   

4. An abdominal ultrasound - so this is one that I would assume is just kind of particular to my boy and his history of intussusception, blocked bowels, constipation and low motility of the GI track - but he got a good one to make sure there wasn't a cause for not having a bowel movement. This actually was when I watched him go from quite agitated to chill. Due to the nature of the test, the curtains had to be drawn, the lights turned off and she pull nice cool gel on his belly. She spoke directly to him and he laid there peacefully. Note to self, keep the lights at a minimum and cool objects close by - just like migraine time!

5. MRI - William is out since I began writing this and is fast asleep in bed. For trach parents - we did have his Bivona trach changed for a Shiley trach, which is MRI compatible. Of note, he didn't blink an eye at this and has not reacted differently to it at all, good to know in case there is a shortage of Bivona's again!! His PORT was also fine to go into the MRI. William was sedated and they said he did well. His medical team from the PICU was with him, including the nurse who had pushed so hard to get the MRI done today, even though it meant she was missing the shift-change happening upstairs and went home late. I was in the waiting room right outside and heard a big cheer go up when he came out of the sedation. This made me smile and also is another example of how amazing the staff at a pediatric hospital can be.

It is the weekend now, so I am hoping a radiologist will have time to just do a quick glance at the MRI and let us know if there is something major or not. I should explain why the time crunch is on. Normally I do not stress about rushing tests or getting answers when it comes to William (if there are any answers)- or at least I really try not to. This time the big push for MRI prelim results is because we don't know the cause of the seizures and the MRI should tell us if this is just a new regular addition to our medical journey (so something that is going to take a long time to sort out and get accustomed to and become part of our norm) or something much more and much more immediate. If it is complicated, we will sit down and take it on. If it is not complicated then I can get on a plane two days from now to fly across the world to Europe for a very much hoped for trip to the European Academy of Childhood Disability where I would get to learn so much as well as have the honour of presenting research findings with the amazing people I work with. (I feel selfish wanting to still go and for keeping my hopes up, and please know my child comes first. If there is any chance there is something up that I need to be here for, everything is being cancelled - but at the same time, I am keeping my fingers, toes and eyes crossed that I might be able to sneak away just for a moment!)

For service providers, EMS and ED staff, please take this to heart: no matter how knowledgeable and capable we medical parents may appear, there can always be new moments of upheaval and change that leave us shaking in their midst. I held it together, but I also needed that moment to lean on my husband, catch my breath and shed a few tears. I felt bad to be so involved and attached at his side, but I also needed to hear you appreciated it, so I knew when it was helpful or not. And for the neurologists who are dealing with parents facing epilepsy for the first time - please be as patient and compassionate as the doctors we have seen so far have been. Taking the time to let the parents ask anything and everything, encouraging them to share the details they are sorting through in their minds and watching videos they have (both of the seizure and one of normal movement patterns) - you truly are caring for the whole family when you do this and it makes such a difference.

So much more to come, I'm certain of that!!