Tuesday, April 28, 2009

Highs and Lows

Today started off relatively well, if way, way too early. Since we only have one car, if I need it during the day I have to take Jeremy to work. Taking him to work this morning meant getting up at 5:20. Connor was not thrilled-- no one asked him if he needed the car today, and I'm pretty sure he'd rather have slept in.

I had approximately 8,000 things to do today, and the day started off pretty well on track. I picked up some paperwork for the school from the doctors' office, called and made two appointments and left Connor's doc a note with four or five more things I need from him, left a message with the nurse down in the GI clinic about Connor's g-tube, which has begun splitting at the end, stopped in at the housing office and gave our thirty days notice, and called back a couple of people who are interested in becoming Connor's respite care worker. (Katy can't do it any more, which is very, very sad. We miss you, Katy!) Connor and I did some therapy and sorted through more of his clothes. The box I was sorting into just happened to be the perfect height for him to stand against, and he did a great job! I had to take a picture, which proved to be difficult. That's my foot I'm using to steady him in the pic. I'm nothing if not a multitasker. I was pretty proud of myself for being so productive, and we stopped around 11:30 for a leisurely lunch break and what I thought would be a short nap.

In the afternoon we were supposed to take a load to the new apartment, do our inventory and walkthrough, drop some paperwork off for the Puyallup school district, and hit the grocery store. None of that happened, though, because just after lunch Connor had another seizure.

This one lasted for about a minute-- long enough for me to start freaking out and thinking about where the diaper bag with the Diastat in it was. I lay him down on the floor, did rescue breathing until he started breathing again on his own and then hooked him up to his oxygen for a little while until his color returned. He hasn't had any seizures since November, and then all of the sudden he's had two in a week and a half. I really, really don't like that he's had two so close to one another. I called the neurologist, but he didn't get back to me today. If we don't hear from him by tomorrow afternoon I'll call down to Children's in Seattle and see what they have to say. In the meantime, I'm back to that stage where I want him stuck to my hip, and every time he sets his apnea alarm off in his crib (he's figured out how to set it off to get my attention) I'm sprinting in there instead of sauntering like I have been doing for the last couple of months. I'm paranoid about him having a seizure and me being in the shower or the bathroom and not being there to get him breathing again until it's too late.

Needless to say, we did nothing the rest of the afternoon. Connor took a four hour nap-- his seizures make him really, really sleepy after he has one-- and then we just hung out for the rest of the day. Jer got home about 9:30, and as soon as I post this we're off to bed.

It was a crazy, crazy day.



Julia O'C said...

Another seizure? Oh, Jess.

Here's a trick I learned to get things moving with Emmett's neurosurgeon: Instead of leaving a message with the doctor, I ask to speak with one of his assistants directly. I can usually get one on the phone immediately. If not, they call me back within minutes. I treat this person like they're my best friend (dropping their name a lot,thanking them profusely for talking to me, etc.). Through the assistant, I can get Emmett in to see the doctor that day or the next, or get my questions answered immediately. It works for us every time.

I'm so, so sorry. I hope the issue is resolved quickly so that you, Connor and your husband can get some peace.

Michelle said...

I'm so sorry to hear that Connor has had another seizure. I know the feeling of wanting to have your child attached to you every second of the day to make sure that he's breathing! Your optimism and stamina continue to amaze me. I will be thinking of you all.

Sweet Lorraine said...

I'm so sorry, Jess. Y'all just can't catch a break, can you? Good news regarding Papa Daddy is quickly met with upsetting news about Connor. Wishing you all the best. Love you. Wugaboo!

Julia said...

So sorry, Jess. I hope you get some answers soon.

AshleyS said...

just a thought--maybe all the stress from the G-tube placement and GI issues has triggered the seizures???

Connor's Mom said...

Julia O'C: I think that's a great tip-- thanks. Unfortunately the military hospitals work a little differently from the civilian world. The doctor doesn't have an assistant-- he has a department secretary who will, regardless of the state of the emergency, simply be sending an e-mail to the doctor, who has three business days to answer. The general attitude is that if it was that urgent, you'd be in the ER instead of trying to get ahold of the doctor. It's rather annoying, but that's the military for you.

Michelle, Julia, thanks for your kind words.

Sweet Lorraine: at least Papa Daddy is home now. I have a limit-- only one family member is allowed to be in crisis mode at one time. This is a strict rule. See that you follow it.

AshleyS: Could be. Doctors are pretty sure that illness and stress can lower the seizure threshold. I guess that's one of the mysteries of the human brain-- they don't know why his seizures would all of the sudden start back up, and they can't tell us whether or not upping his medication, which is what the neurologist has done, will help or not. I guess we'll have to wait and see.

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