Ok, I knew last week would be busy, but, boy, I was not expecting it to be quite so crazy…
I’m still playing catch-up, but here’s the gist of what happened-
4 of our 8 children auditioned for The Wizard of Oz with Prairie Fire Children’s Theatre through Community Ed in a neighboring town on Monday morning. Jaron landed the role of Uncle Henry, Liberty was cast as a Winkie (the wicked witch’s slaves), Grace got to be a Flying Monkey, and 7 yr old Hope (this was the 1st year she was old enough to audition) got to be Toto. The first rehearsal began immediately after the parts were doled out, and our whirlwind week was underway.
Ian mentioned a headache.
Tuesday & Wednesday mornings brought more 4 hr rehearsals. The older kids in the play were having a blast while the younger ones and I were trying to keep occupied in the lunchroom and hallways of a local high school (yes, for 4 hrs at a stretch, and no, it wasn’t always blissful fun), and Ian relaxed in the auditorium seating and watched patiently.
He still had a headache.
He’s had lots of headaches, even before brain surgery. The weather had shifted, the pollen count shot up that week, and I was also having some serious sinus pressure and accompanying headaches. We treated for pain, but didn’t think much of the headaches themselves…
I think it was Wednesday afternoon when he said “This isn’t like any sinus headache I’ve had before.”
I thought, well, we’ve been getting up early, and he’s been a bit more active along with getting less sleep, that can certainly affect tension headaches. Maybe it wasn’t sinuses. Maybe he just needed to get more sleep. He has taking afternoon naps, but… maybe he needed more?
Thursday morning he was just too wiped out to come with us to rehearsal. It’s only about 20 minutes away (that’s a short drive when you live out in the country and everything else is 45 minutes to an hour, or more, away), so I figured he’d be ok just napping while we were gone. He seemed to like that idea, so I made sure he had plenty of water, something to eat, and his cell phone nearby, and I headed out with the kids.
He called about an hour later to tell me he was sick. He was vomiting, repeatedly. This was new, and this was not from chemo. He was 4 weeks into a 6 week round of a chemo that only caused him minimal nausea for the first few days.
I told him to keep taking sips of water, lie down, and hang on…
And I called the clinic.
Of course, Ian’s nurse was with a patient, so the person I talked spoke with took a message. Brain tumor patient, days of increasing headaches, now persistent vomiting… That should be an urgent message.
Ian seemed ok to just rest for a while. I nervously waited for the return call and attempted to occupy my youngest 3 children while the others finished up their rehearsals. We headed straight home, did not pass Go, did not collect $200, did not stop for ice cream.
Ian was clearly not merely exhausted. His pain was intensifying and his nausea was unrelenting.
I hadn’t heard back from his nurse. I called back, and again left a message. I waited 30 minutes, and was about to call back, this time absolutely determined to not get off the line without talking to his nurse (“No, I’ll wait, you need to get her, now”), when she called back. She agreed he needed to be seen that afternoon, zofran and tylenol were not cutting it. We hopped in the van and headed out. She called back to say that all of the clinic providers were booked solid and that I should just take him to the ER. He needed scans, and he needed them right away.
His scans showed hydrocephalus.
Each of ventricles had grown significantly in size since his last MRI (about 7 weeks earlier), and they were unable to identify a reason. At that point, the why didn’t matter.
He didn’t have a sinus headache. He wasn’t merely exhausted.
He had a potentially very dangerous increasing pressure in his head, on his brain.
He needed surgery.
It was late evening by the time he’d gotten his scans and they’d looked at them, compared them with recent scans, and consulted with the neurosurgeon. Ian was admitted to the PICU, given painkillers and anti-nausea meds, and observed overnight. Neurosurgery was consulted again early on Friday morning, and a time slot with his name on it was added to the surgery schedule.
I knew it was worsening by the difference I saw in Ian from Thursday afternoon to Friday morning.
There was a day, not that long ago, when a person would’ve died from something like this. It’s amazing to think of the medical advancements that have become so common now. I mean, brain surgery?! Shunts?! I haven’t researched the history, but isn’t it crazy to think of the first time someone said “Hey, what if we tried drilling a hole in the skull and inserting a tube into the fluid-filled area, then run the tube down under the skin and let the excess cerebral spinal fluid drain into the abdomen?” Seriously. Who thinks of things like that?! Crazy.
I’m so thankful to live here and now!
I mean, as much as I would’ve loved to have been a contemporary of Elizabeth Bennet, I don’t think leeches would’ve helped much in this situation… (or, in any situation…)
Ian had not-quite-emergency-but-pretty-urgent VP shunt surgery on Friday afternoon to relieve the dangerous pressure on his brain, while 4 of our children were having dress rehearsal before their opening night. It was a crazy week.
I was told that fluid backing up like that, this far out after surgery, is rare.
Rare is starting to sound like something that means “will probably happen to Ian…”
It’s all been so crazy, but, what can you do? Take each day as it comes, each hour, sometimes each minute. Trust the best neurosurgeon around and the team of excellent doctors at Children’s.
And trust Him.
Thou wilt keep him in perfect peace, whose mind is stayed on thee: because he trusteth in thee.
Trust ye in the Lord for ever: for in the Lord Jehovah is everlasting strength:
Isaiah 26:3-4 KJV
What else can we do?