An ambulance ride is something many parents have never had to experience doing with their child. It’s also a ride that many are sadly all too familiar with. We had our first experience with needing to call 911 and having Walt taken to the ER by ambulance just this past weekend. It’s one ride that I’m good never having to take again!
Walt gave us quite a scare on Sunday. He was his normal self all day long. Had a nice poopie diaper that I was changing (a small detail I’m sure you’re glad to know) and then he threw up! I cleaned him off and then he started having a seizure. Walt has seizures; that wasn’t anything new. He had seizures in the NICU, he’s been on seizure medication since then. We suffered from multiple infantile spasms daily for a brief period when he was 6 months old (which aren’t fun to witness!) and he was put on a steroid that stopped them and we haven’t had any since.
We know that he has focal seizures. His latest EEG showed focal seizures on the right side of his brain. He’ll stare off to the side for a second, like he’s gone off in his own world, then he’ll come back to. It’s the craziest thing and they are hard to catch if you aren’t watching him closely or know what to look for. He’ll be talking, playing, eating and then he’ll just go and stare off in the distance and then snap out of it after a few seconds. Sometimes he’ll return right back to what he was doing or sometimes he might get upset.
This picture was after the seizure was over but he continued to stare to the right forever, almost frozen like.
Anyways, this seizure was different from all the others. It was the worst and longest one he’s had. His left arm and eyes began to tick together in a rhythmic beat. He stared off to the side and wasn’t responding to anything I was doing. I was talking, touching, snapping…nothing. I started to record it to show his neurologist, something that helps when I try to explain it all to him. Seconds passed, then the video hit a minute long and I feared that this one was going to be different. Then my mind started racing. What do I do? Who do I call first? I called his neurologist, we’ve done that in the past to talk things through. It was Sunday so I got his messaging center, they took my message and passed it on to him to call me back…yay! We were 5 minutes in…I called 911 because he’s never had a seizure last this long before. I texted my mom to get to my house quickly…10 minutes in…
Brian was playing golf. He was out on the course and not answering. I called the golf shop and they found him on 18. He was one putt away from finishing his round. Of course, he was having his best round that day! He was shooting his lowest score at this course. I’m pretty certain Walt knew this and just wanted to be included in all of dada’s fun! He called me, I filled him in, he told his group what was happening, he sank his 3 foot putt and headed to meet us. He beat us to the hospital by 10 minutes.
911 dispatched an ambulance our way. Mom got to us. My dad came. Walt’s still not responding. My neurologist called me back. Asked me if we had a rectal medicine to stop the seizure, nope never needed it before and don’t have it. I pinched Walt, on the inside of his arm, which as you know is tender! No response…I’m trying not to loose it!
15 minutes.Still trying not to loose it.
My mom held Walt. She and my dad were talking to him. The ambulance arrived. They strapped me in and I held Walt. My first ambulance ride. He checked Walt out, vitals, blood sugar. All was fine. Heartbeat was strong. Breathing was good. Blood pressure was good. His blood sugar was a little high, but not bad. Medicine wasn’t needed, he didn’t want it to affect his breathing. The seizure had stopped by now.
This seizure lasted 20 minutes.At 45 minutes he made a noise and started to come out of it. at 55 minutes he was starting to get back to himself, moving and talking some.
Once at the ER the nurses checked him out. An IV was placed (That was fun!) I mean, who loves IVs? I tried feeding him a little. Walt told me he had enough when he threw it up all over the two of us! He needed changing, the wrap around his IV needed redoing, new sheets, new gown, and I needed new clothes too. They gave me what looked like cheap paper scrubs. A lovely shade of green….then they told me not to go running. Why would I go running? These would rip if I did that! Nope, these were for their psychiatric patients. Great, now I look like I’m a patient! And I may not get to leave the hospital. Walt was beginning to act like himself again. They drew blood to check his Keppra levels (thats his seizure medicine). He was given Zofran to help with the nausea and a loading dose of seizure medicine. We also got a prescription for Diazepam as a rescue medicine if he has another seizure that lasts 5 minutes. Diazepam was what his neurologist asked me to administer at home if we had it, well now we will.
Side note…can’t get this dose of Diazepam anywhere! No pharmacy has it or can get it. So an apothecary is making a compound for us. His neurologist gave the ok for it and it’s better than not having the medicine.
Walt seemed to be getting back to himself. We were discharged and headed home. I can always find some humor in anything. I told the staff that I would carry Walt out in my new green psych suit and have Brian yell, “She’s got my baby!” Of course we didn’t do it.
Seizures are scary. It’s hard to watch your baby have one and not be able to do anything. What about in the eyes of a sibling? Whit’s almost 4 and truthfully was unaware of what was happening at first. He was happy to see T-Maw and Papa Mac come over. He thought they were coming to play. We were telling him that brother wasn’t feeling well, he was having a seizure, and needed to go to the doctor. Whit is very familiar with Walt’s therapies and needing to go to the doctor or appointments. When the ambulance arrived at the house he was quite interested in it. As I walked down to get in I could hear Whit calling my name and wanting to go with me. I told him that we would be fine, just needed to go see Walt’s doctors for a bit and that he’d have fun with T-Maw and Papa Mac!
Whit now likes to tell people that his brother went in an ambulance and is all better. It was the sweetest thing when we got home; Whit was happy to see us but even happier when we told him Walt was all better.
Walt gave us quite a scare. He’s back to himself now. Took a few days, the first night was awful. He had the hardest time sleeping and resting, but we are back on schedule again. we took it easy, had lots of snuggles, slowly got back in the swing of things and thanked God for it not being worse. We have a game plan if this happens again and I pray it never happens again.