This morning started off as it usually does, with my son wandering into my room around 7:00 and jumping into bed with me for a snuggle. As always, I was barely coherent, kicking my way to the surface of consciousness as I got the report on his night’s sleep. His “awesome” dreams, his nightmares, his thoughts. Eventually, he dragged me out of bed and we made our way downstairs for breakfast.
Lately, he has made it through the morning meal feeling okay, has eaten and then is ready to face the day. Today, after he finished his Cheerios, he immediately made his way to the couch and lay down. I feel so sleepy, I need to lie down. I feel like if I walk around I’m going to fall and clunk my head. Words that spiral fear and dread into me.
But I was bright and chirpy, “Perhaps you’ll feel better in a moment and we can still make it to camp.”
Pretty soon I realized that camp was not on the cards today, and assured him that he could watch back-to-back episodes of an Iron Man cartoon he is a bit obsessed with. He relaxed with his show and I wondered. I mulled. I considered. I watched him ride waves of unwell all morning. One minute up, Oh I feel better! The next minute down, Ugh, my head feels yucky.
Our appointment with Dr. Dirks is on Monday, could he potentially make it to then? But if there is something wrong with his shunt, I want to get this show on the road, I don’t want to wait. I want him to make it to the first day of school, also his birthday.
After a couple of hours of consideration, I figured the best course of action would be to bring him in, to establish WHAT THE F**K IS GOING ON. I called the Nurse Practitioner of Neurosurgery and told her my thoughts. She agreed I should bring him and told me she would alert the team.
So, I very thoughtfully packed all of the things we would need for a hospital stay. Clothes and PJ’s, toiletries, reading materials, fun stuff stowed in Gav’s new Iron Man backpack. His old stroller in case he needs to be horizontal. After this exceptional packing job, I packed my little man in the car and we were off. On our way to hospital, I found some of his comments alarming and upsetting. He seemed forgetful and vague. He kept pausing to search for his words as we chatted, taking long moments to remember the names of friends and cherished characters on shows.
My adrenaline had already spiked an all-time high and I was pretty sure that I could take down an angry bear in hand-to-hand combat. Every nerve in my body was firing, my breath coming in short shallow breaths, but still keeping this calm and ice-cool facade on for my son.
On the (seemingly) interminable drive, I responded to his comments and observations genially, pointed out the building that’s been demolished at the corner of Gerrard and Elizabeth, and said in a Disney voice, “Okay, here we go!” as we drove into the parking lot. A part of me did all of that and more, but under the surface this angry wasps’ nest of thoughts was buzzing around and filling my eyes with tears.
How I wished that we never had to drive down into the bowels of the HSC parking lot again, looking for a spot. How I wished that it didn’t all feel so familiar, that I didn’t get annoyed at getting stuck behind newbies who troll for a parking spot on P1. P1, people, are you kidding? Those spots are taken by 8:00. Move on to P3 or P4 and quickly now, because we have places to be.
We made our way into the ER and Bean felt well enough to walk in on his own two feet and show off his backpack to all the nurses. We were soon in a room. Gav’s wellness came and went. We were joined by my dad, his “Da” who made life so much easier by just keeping Bean entertained for many long hours. And I explained our story to the intake nurse, the triage nurse, the ER nurse, the ER fellow, the ER staff doctor, and finally, finally, the neurosurgery fellow.
During this time Gavin underwent an abdominal ultrasound, now being implemented as a diagnostic tool in the ER. (Good call, HSC) It was unremarkable. But kind of hilarious, because he actually has a follow-up ultrasound booked for tomorrow which we still must attend. Oh, sigh.
After being seen by neurosurge, orders were put in for a shunt series x-ray, which is standard. Gav agreed to come but needed to be carried, because he felt yucky. Done in a few minutes, he suddenly felt way, way, better, and tap-danced his way back to his room. We were then told that a quick MRI would happen soon.
At around 6:00 in the evening, we were called down to MRI. By that time, Daddy had arrived and kept him company in the scan. Awhile after arriving back in the ER room, the neurosurgery fellow came to report.
The shunt is functioning. There is no sign of malfunction. But it is functioning too well. We can tell how the shunt is working by ventricle size. Enlarged ventricles mean increased cranial pressure. Gavin’s ventricles are tiny and have always been from the post-op days when his shunt was inserted. But now… they are too tiny.
In the short-term, this is sort-of okay. We don’t need to make crazy, emergent moves NOW all Grey’s Anatomy. But, this needs to be addressed. We still have our clinic appointment with Dr. Dirks on Monday, and I hope this will mean we can begin to hatch a plan. We don’t know what the plan will be yet, as the fellow was non-committal as to what he thought Dirks would do. Our speculations include: replacing the shunt, testing the shunt, living without the shunt? Obviously, the preference is for the latter.
The next couple of days will be about lying low and helping Gavin to feel as well as he can despite these very challenging circumstances. I have no idea how long this will continue for, so we all need to accept that this is the way things are for the time being, and to find a way to live our best life in between times.
I want to extend sincere thanks to all of our lovely friends and family for always supporting us through these last 3 very challenging years. Much, much love to you all!