Tuesday, December 8, 2009

In Which We Have a Day of Highs and Lows

This afternoon Jeremy, Connor and I drove up to the hospital where they did his surgeries for his big follow-up appointment. They took some x-rays and said that everything looks like it's doing well. Then they gave us some great news; Jer can start doing some weight bearing activities! They'd like him to start out in the pool. Once he's comfortable there and the doctors think he is ready he can move to the parallel bars, and from there he'll be able to move to crutches. Jeremy is fired up about getting in the pool-- I think it's going to be his new hobby. He used to run marathons, but those are sort of out now, so he's talking about taking up swimming as his cardiovascular activity of choice. All the pools he'd be using this time of year are indoors, so it's fine with me. Maybe Connor and I will join him sometimes! While it'll still probably be a good while before Jer is able to walk again, we're taking the next step towards him being back on his feet. That's a really exciting thing!

So we were totally stoked about this news, and while on the way home we decided to stop by our favorite sushi place in Puyallup to pick up some dinner as a treat. I left Jer and Connor out in the car and went in to get our food. I brought our yummy-smelling box back to the car, handed it to Jer, and was setting my purse in the front seat when Connor abruptly went very quiet and slumped over in his wheelchair. He was having another seizure.

This was one of the ones that we're used to seeing with him, in which he stops breathing and turns blue. I ran around the car, threw open the side door, unbuckled him and laid him down across the front seat. I only had to give him a couple of breaths before he started breathing again, though after I got him breathing the first time he stopped again a few seconds later and I had to give him a couple more. This seizure was really fast-- it maybe only lasted about half a minute or so, and the only trembling I saw was right after I'd gotten him to start breathing the first time-- his jaw quivered for a second and then he stopped breathing again and the motion stopped at the same time. He also showed no awareness at all, unlike the last two seizures when he was conscious and very obviously knew that something was going on (up until he stopped breathing, anyway).

While I'm glad that this seizure was a very short one and seemed to be about on par with his "usual" seizures, I am concerned about the fact that this one came only four days after the last one. We still haven't heard from the neurologist (don't get me started) so I'll be calling them again tomorrow morning and if I don't hear from them by Thursday I'll be making a trip down there. It's obvious that Connor's seizures are no longer controlled by his medication and it's imperative that we get this figured out as soon as possible. I'm sure they have a lot to do, and I know they are still within their "three business days" window to get back to me so according to the rules they haven't done anything wrong, but it's not like I'm calling about how Connor stubbed his toe or something. Maybe it's more of a priority in my mind than it is in theirs, as they probably have people calling in about seizures all the time, but I don't really care at the moment. I'm angry anyway. Oh well.

So all in all it was a roller coaster of a day. I have a plate of warm brownies, a good book, and a mug of hot cocoa sitting next to me right now though, so at least it's ending on a good note!



Kristin said...

Yay for Jeremy!! I'm sure he's thrilled at having the option of being more active. I hope the recovery process continues with out much problem for him!

I'm sorry to hear about Connor's continuing seizures. I truly hope the doctor's delay in getting back to you is because they're trying to develop a treatment plan. *fingers crossed* that this gets resolved quickly.

xraevision said...

I can only imagine how excited Jer must be about getting into a pool - just a little bit more freedom! I'm so glad his recovery is going smoothly.

I'm sorry that you are in the frustrating situation of waiting for a response from Connor's neurologist. I hope something can be changed or resolved this week!

leah said...

Great news for the go-ahead on the weight-bearing activities and swimming!

I can't believe the neurologist hasn't called you back yet. I know other kids have seizures, but how many have seizures that have changed type and duration, and affect their autonomic system? They need a better "triage" system- kids who quit breathing get in first.

I'm sending lots of prayers your way, that the neurologist calls you and gets you in immediately, and that they can come up with something better than his current medication.

Niksmom said...

Sending hugs and prayers.

Wherever HE Leads We'll Go said...

So happy to hear Jeremy's news! That is so exciting! I bet he is thrilled.

I cannot believe the situation with Connor! It is ridiculous that the neurologist has not called back! I don't care how many other patients they have - a kid who stops breathing when having seizures takes precedence every day of the week!

I really hope that you are able to get some answers and soon. I agree with your plan to just pop in there if you don't hear from them. Pretty hard to ignore someone standing right in your face!

Katy said...

They may get a lot of calls about seizures, but I think it's unacceptable that you're having to perform rescue breathing on your son more than once a week. There are a lot of different types of seizures and Connor's are threatening his well being.

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