I am in the clutches of a particularly bad case of scanxiety. We finally got a date for MRI – it is scheduled for next Tuesday morning, January 24th. It comes the day after our six-month check-up with Dr. Dirks of neurosurgery. I would have preferred to have the scan done before the neurosurge clinic date but hospital scheduling is what it is. I am anxiously awaiting both appointments.
I’m not really sure why I feel so insecure this time around. I’m asking myself if I have seen any frightening symptoms, and the answer is, Not really. I mean “strange behaviour”? I’d like to meet a three-year-old who doesn’t act oddly. Most of the time. Vomiting, headaches, gait changes, lethargy? No.
We are not 100% sure if Gavin will get to do his scans anyway as he spiked a fever yesterday. Gavin has had exactly 2 fevers since his shunt revision. One was at the very end of December and one was yesterday. I should mention that he has a really bad cold right now, and also did for that other fever. Both fevers cleared up in less than 24 hours.
Yesterday afternoon he seemed completely fine, but I suddenly realized that he felt warm and took a temp, which came back at 38.7 degrees Celsius. So not ridiculously high, but high enough. Of course, my stomach dropped to the floor and I started feeling panic seeping in. If I was any normal parent, I would probably feel worried, but I wouldn’t be asking myself, What is this? Is this a sign of shunt infection or failure?
Then things took a slight downward turn. I don’t have a kid who vomits orange stuff or gets cramps or sore throats or ear-aches. No, thus far, Gav has had remarkable luck with those things. I have a kid who has a skull defect and a shunt. I was told that there was a six-month window of shunt infection being a possibility after insertion. The window has (just) closed on that time period. So infection is basically ruled out. BUT – what if we noticed some other head pressure signs? I suddenly realized yesterday, that in the area of Gavin’s defect, things were not the same as usual. For those of you who don’t know, Bean has a hole in the back of his skull. Most of the time this area looks quite sunken, almost concave, as his shunt reduces the pressure in his head. In the mornings, after being prone all night, it usually looks quite flat, and then sinks in after being up and about for some time. Yesterday afternoon, it looked flat rather than sunken. It was not bulging as it used to prior to his shunt revision in June, it was just flat. However, that is not what the norm has been for awhile. Different is not good! Different is reason to panic!
Panic I did. I convinced the long-suffering Bubby to come down and join Bean and I for dinner as Daddy was out. I wanted her two cents. We both agreed that Gavin was acting kind of weird and scatty, but that could be attributed to the fever. However, he went off to sleep normally enough, and when I checked his temp later, it had gone back to normal.
Part of me wanted to fly out the door to emerg. The other part knew that it would most likely be a complete waste of time, as I would not be able to consult with the doctor I want to consult with (Dr. Dirks) and after many hours of waiting would end up talking to the fellow who has no knowledge of Gav’s case, who would probably recommend a CT. Is there a point in doing a CT when we have an MRI booked for Tuesday? No. Is Gav, overall, well enough to wait until Monday and Tuesday? The answer, today, is yes.
I wish I could keep a world-renowned neurosurgeon in my closet, and just call him/her out for consults when I need them. In our very unique situation, there is pretty much no one in the community with the level of expertise required to calm my fears on these things. Calling Telehealth?? Oh please, that was in the time before. There are a handful of doctors at Sick Kids that are familiar enough with us that I trust their input, and like busy doctors everywhere, it can be hard to pin them down.
So despite the fact that Gavin’s behaviour was pretty normal and he was probably just a cranky kid with a fever and a seriously snotty nose, I went into the panic spiral. Short gasping breaths, mouth dry as paper, no food down, teary and weeping, and then finally, hours huddled under a blanket on a couch while my body shook with chills as the physical reaction to my overwrought emotions. Bubby calmed me down as best she could. (My God, where would I be without my mother?) Craig joined in the calming when he came home. We all agreed to sleep on it and see how things were in the morning.
In the am, Gav was pretty cheery and requested his breakfast as usual, played as usual, and had only a slight low-grade temp. We then realized that his head had sunken back to the way it was before. Hurrah! Back to normal! He seemed well but I wanted to keep him quiet today. Craig and I agreed to be watchful but saw no need to rush off to the hospital. We will wait til Monday. We did have to miss fun activities and a friend’s birthday party, (boo) but I thought it best to keep him entertained at home.
And entertain him I did. There is nothing like a big scare to make you very, very present with your child. You really appreciate playing with them and hearing their amazing thoughts. I mean, I always spend a lot of time playing with Gav, but today I played with him for about seven or eight hours. I am exhausted. We played construction site, hair salon, doctors doing surgery, (eek! I guess he needs an IV, we have to get some fluids into him, – Gavin) Scrabble (!) Calico Critters, musical instruments, carpenters, musketeers, and had our own private dance party. And then a few other things.
He has had a tonne of energy and was doing wind sprints up and down the house. That runny nose is not keeping him down. I have felt the back of his head so many times today that he has got seriously annoyed with me. (Wouldn’t you? It’s creepy.) It has kind of fluctuated a bit with the day. But overall, he seems SO fine. More than fine.
As for me – when am I going to learn to roll with the punches? Ever? When will my brain not leap from where we are and keep taking those steps all the way down that road. I see it all spread out before me and I know, first it’s this and then this and then this. That is what will happen, right? I know, defeatist thinking. Life will not always be such an emergency. Having a cold is not an emergency. I just need to convince my brain of that.
Come on Monday, come on Tuesday. I want to get past you and beyond. Into another three months.
2 responses to “Come on, Tuesday”
You are a brave strong Mama Erica. Everything will be good on Tuesday I know it!
Erica, just wanted to let you know that the other CRINET kids I am aware of in Germany and Scandinavia are doing fine. Maybe this is reassuring…..All the best, Martin