That’s it. No other symptoms to prepare us for what was to come next. Nothing to cushion the blow the doctor was about to inflict upon my entire being. As mentioned, I had her when I was 16… She is all I know. Every decision, every life choice, every breath I have ever taken has included her; how will this effect her? How will this benefit her? What possibilities does this open up?
It was only a headache. A headache located always in the lower, back of her skull. Late October is when they began, sporadically at first. I got her a heating pad, gave her some pain medication, doubled her Hydrocortisone if needed, cold clothes… Mid November I called her Endocrinologist to see about playing with her steroid doses. She had just seen her and they had increased her Growth Hormone, so it MUST be that… We reprogrammed it, lowered her dose, and waited… They seemed to get a bit better, life moved on… Until it didn’t anymore, and they came back. Fast forward to late January, three severe headaches within a week instilling vomiting, tears and a phone call home from school or daycare every time. The third time, I called her pediatrician and said
“what do I do?”.
“Take her to the Stollery” the nurse said… And that’s the unknowing moment my entire, well.. everything had changed.
I drove towards daycare from my best friend of 16 years’ house around 3:30pm, planning in my head the bag to pack and the potential causes to tell the doctors… Maybe it was the suspected bladder infection from a few months ago getting worse, maybe her thyroid levels are too high, maybe her cortisol levels are too low, maybe her vision has changed and causing the headaches… I arrived at daycare to my baby sleeping comfortably on an arm-chair in a dark corner,, so I woke her up and got her dressed and headed towards home… I let her take a nap before we left, as she was clearly exhausted, while I took a quick shower and packed our bags. I know from experience hospital trips require things to do, snacks, water, etc… With her Hypopituitarism, it’s hard to say how long she stays as some doctors are more cautious than others, so better to be safe than sorry.
Six in the evening, we are on our way to the hospital. We are listening to Sum 41-War (her favorite song) as we head down Gateway Boulevard towards the Stollery Children’s Hospital emergency unit. At this point, Janaya is back to herself (great timing Janaya..), talkative, energetic and sassy. We park, check her in and find a comfy seat by a TV and the wait begins.
“Janaya” is called out, pronounced with emphasis on the ‘ay’ as if it was ‘eye’. Janaya looks at me with that look again, because her mom couldn’t be fancy and pronounce it that way so she forever has to tell people it’s ‘Janaya’ pronounced ‘eh’ not ‘eye’. We head back to the room around 10pm, settle in, and wait. A little while later, a resident doctor comes in and does his check and lets me know what we can do. He shut down any possibilities I thought it could be, as headaches in the back of the head weren’t a common side effect of said problems. He asked me “what is your main concern right now?” and I simply followed with “her brain”. I mean, considering her Hypopit’ and her Optic Nerve Hypoplasia, why wouldn’t I be if nothing else I thought caused it was the culprit? He offered up a couple of routine blood tests and mentioned a CT scan, however didn’t want to radiate if unnecessary. He went off to consult his superior, as I sat there looking at my baby read her Captain Underpants novel wondering “my girl… What is going on…”.
He came back around 1am stating we were going to proceed with the CT scan, and about 30 minutes later we were on our way up and back down again. She did well for the scan, didn’t move and it was over without a hitch. Janaya asks if she can see the scan, and the technician obliged after confirming there was no known brain injury.
Two-ish in the morning, he comes in and says
“I checked the CT scan, they appear normal to me and the blood tests came back fine. Looking at her now, I feel confident she won’t die overnight so we will be discharging her and the radiologist will take a look at the scan in the morning and call you. I believe she will say the same as me, so be in touch with Janayas Endocrinologist and Pediatrician to figure out what could be causing the headaches. Between them, you are in good hands. Good luck with everything.”
Something in my gut told me something wasn’t right, however we were tired and Janaya just wanted to go home… So we packed up, and headed home. We arrived home around 3am, Janaya came to bed with me and off to sleep we went.
And then the phone rang…
The time was 8:11am… I lifted my phone, still groggy with sleep, and the screen read ‘Stollery Hosp..’. I answered, and the conversation that followed was the beginning of the most life changing moment of my entire life.
“We found something abnormal with the CT scan and need you to come in as soon as possible for an MRI. Make sure Janaya does not eat or drink anything as we will be sedating her. Come back to emergency and we will see you soon.”
To Be Continued…
** Date the post was written was changed to allow posts to show in order **
** Originally written February 9 **