Haven't we been here before?

I got a call while I was in a meeting today, from my wife. She's the only person I'll accept calls from when I'm in that situation, and I answer the phone in the same way, with a whispered, "Hi, I'm in a meeting, is everything ok?" Almost always, she'll say everything's fine, and just call her back when I get out.

Not today.

My son was having a really bad day today, having emotional outbursts and not fully processing what was going on or where he was. Since he's on a high-dose steroid, he's been fairly moody and irritable lately, but never to this extreme. Still, it didn't seem like anything more than just a really bad case of frustration and mood swings. My wife finally got him calmed down enough to take a nap, figuring that would do him some good (he has typically been taking a long nap in the afternoon anyway), but after maybe a half hour or so, she happened to look over at him and notice that he wasn't exactly napping — his eyes were open and twitching. She called the doctor, who then advised her to call 911. When he was on the ambulance en route to the local hospital's ER, she called me.

I excused myself from the meeting, grabbed my coat and backpack, and met her there. He was having a mild seizure. They gave him some medication to stop the seizure, and then they did a CAT scan to rule out the possibility of a stroke. The scan came up normal. Of course, I predicted as much — the entire 5-week stay in the hospital, every lab test they could think of came up negative; he just wasn't well, had ferritin levels higher than they'd ever seen, daily fevers over 104°F…

Anyway, with the seizure under control, they transferred him back up to Children's Hospital. I parked in the same parking lot and went to the front desk. I couldn't just flash my wristband and walk in this time, though; I actually had to stop and find where they brought him in. The desk clerk found that he was brought to the ER and offered to walk me there. I was about to object, since I knew the way there, but then I remembered that there is a card-access lock door from the main hospital leading to the ER, and I'd need someone to let me in anyway.

It's sad that I know this.

The primary doctor here in charge of his case was aware of this possibility. The medications he's on, the cyclosporine in combination with the steroid, can raise blood pressure, and the increase in blood pressure can trigger a seizure like this. In fact, he noted this at my son's visit last week. The day after he saw my son, my son had an appointment with the cardiologist, and the doctor said he saw today the blood pressure taken at that appointment and was very disappointed that the cardiologist didn't call him. Although the blood pressure taken wasn't extremely high, it was high enough that he could have prescribed some blood pressure medication to keep it down and prevent this seizure from being a possibility.

It's the doctor's initial opinion that, once we get his blood pressure back to normal and he recovers from the seizure, that he'll be good to go home again, just with some blood pressure meds as well this time. Unfortunately, he's also running a fever now (his first in over two weeks), so they're checking for infection (dollars to donuts they don't find one, again), and hopefully this fever is just a temporary thing that doesn't keep us from going back home tomorrow.

It's really depressing to be back here. On Sunday, we actually started to get close to normal. The whole family was finally able to attend church together. He slept through our sacrament meeting, but he attended his Sunday School classes and was smiling and laughing with his friends. He's even started to get himself up and down the stairs at home. And now… here we are again.


Sal Cartusciello said...

I'm sorry to read this about your son. Again, you will be in our thoughts and prayers.

Unknown said...

Sorry this is happening again. Let us know if you need anything. We will be thinking of you and your family.


bookladydavina said...

So sorry he's got more to go through. Ain't it lovely how instead of finding and fixing the problem anymore, main thing the docs seem to do is throw meds at it, then wait for those to screw more things up so they can throw more meds at it.. I really hope someone can figure out what is going on with him soon.

Maizrim said...

Thanks for the update man - sucks that it happened again, but hopefully they'll take care of the additional problems and you guys can go home again. I hate the fact that this could have been avoided.

Craig said...


All the Lord's blessings to you and your family. I will be praying for your son!!

Sent his name to the Temple role yet?

Best of luck,
VisionBender (Craig)