Friday morning, we all woke up much earlier than normal.
Chad had an MRI in Raleigh at Rex at 8:45, and we had to be there at 8:15 for paperwork.
Which means we had to leave here around 7:30 to make sure we avoided any traffic backups.
We made it there in good time, and the girls were in good spirits.
The girls & I made ourselves comfy while Chad filled out paperwork.
They called his name to register, and I was fielding a million questions from two curious little girls.
Where is Daddy going?
Why do they take so many pictures of his head?
That boo-boo in his head is just terrible, isn’t it Mommy?
Why does Daddy have to take more medicine?
Why do we have to go to the doctor so much?
Is Daddy staying at the hospital tonight?
It’s definitely getting harder with the girls. They both know something’s not right. Carys remembers things from before Chad got sick, and Cailyn just plays along with whatever Carys says. They are asking harder and harder questions — and they are definitely increasingly anxious when we mention doctor’s visits, hospitals or medicine. So, we’ve decided to take them with us when we can. It helps Carys, I think. Or at least I hope it does. I can imagine it’s pretty scary to hear second-hand knowledge about our doctor’s trips and hospital stays — so we take her along as often as we can. She gets to see that it’s not so scary. And, truth be told, this is just part of our life now. We hope that it will become less frequent, but doctors, blood work, MRI, and hospitals are just a part of our life.
Anyway, back to main point.
After I get the girls settled, we are unexpectedly whisked away to yet another waiting area — the MRI waiting room. We have never been to this particular hospital for an MRI — only to have babies! The girls thought it was cool to see the hospital where they were born. And it was. Happy times!
As we resettle in the MRI waiting area, we meet the physiologist that will be helping with Chad’s scan. He’s very nice, and dressed casually — no white coat. It was nice to see a more personal side to a doctor.
He told us the scan wouldn’t take very long, as they were only looking for certain “slices” of Chad’s noggin to match the CT Scan from Monday. Then they layer the images form the CT and the MRI together. This gives them the best idea of how to approach the tumor with radiation; at what angle and at what dosage.
Chad’s radiation mask. Taped “+” marks depict possible radiation beam entry areas. White base bolts to the table to ensure his head is stable and in the same position throughout the course of treatment. He also has to wear a custom bite plate to ensure his mouth is closed at the same angle for each treatment.
And with that brief conversation, Chad was taken away by a technician to start the process. With his radiation mask clad in a bright red biohazard bag in hand (he had to wear it to mimic the head situation he would be in for treatment), he disappeared into the MRI room. And then it’s announced that one of my munchkins has to pee. NOW. So we all head to the bathroom while Chad is getting ready for his scan.
We return from the potty & the snack bar and find Scooby Doo on the small TV in the room.
We haven’t been away for more than 15 minutes when Chad comes back in.
I couldn’t believe that he could be done yet — and then I saw the look of frustration on his face.
When Chad received his shunt last month, we were told there was a possibility that the valve would need to be reset after having an MRI. Apparently, it’s not possible. It’s probable. As in, as soon as Chad walks into the MRI room, the shunt will turn itself off.
Which isn’t a huge issue. It just has to be reset within 24 hours.
Only, no one in the WHOLE hospital knows how to reset it.
So they call the neuro on call, who happens to be Dr. Koeleveld, Chad’s first neurosurgeon from 2007.
Dr. K doesn’t feel comfortable taking the risk of resetting the valve since Chad is no longer in his care.
So, we sit around and wait for the physiologist to get ahold of Dr. Tatter in Winston-Salem.
After some time, we discover that Chad’s MRI will need to be rescheduled. Dr. Tatter is sending over some information about Chad’s shunt placement & it’s technical issues to the MRI team at Rex. They will study and be better prepared to handle this sometime next week.
Which, of course, throws a wrench into our plans. Chad was to have a dry-run of his radiation appointment on Wednesday. And then we’re off to see Dr. Tatter on Thursday. Today (Monday) is a Holiday, so that only leaves Tuesday for an MRI. I seriously doubt that will happen.
We’ll see, though. It’s not like we’re in a huge rush — although I would like to actually start treatment some time soon. The quicker we start, the faster I can start ticking off 6 weeks of treatment from our calendar.
Chad had a seizure this morning (Monday) pretty early. It was about a minute in length, with a quicker recovery time. He didn’t really have much of a warning that it was coming; just long enough to say, “Skye – seizure” and that was it. He hadn’t been out of bed, and he doens’t remember feeling any pressure or anything. It’s strange when they just come out of the blue like that. Thankfully, he was in bed and not in the bathroom or kitchen where he could have fallen and hurt himself.
He’s doing phenomenally well otherwise. He’s been keeping busy with a little bit of yard work here and there.
He’s feeling pretty good, generally. He’s working from home a few more hours per day. And he’s hoping to get into the office one day soon. We’re not going to rush that, as he still tires pretty easily.
I’ll keep you posted about the week as it progresses. He should get clearance to drive on Thursday, and to go back to work as he feels able.