Author: Veronica

As far as plans go, it’s not a great plan (a great plan being “magically stop my baby having seizures”) but it’s a plan and it will do while we wait for Evie’s metabolic tests to come back.

She started phenobarbital Tuesday morning and has been having regular doses of what I am terming “baby drugs” (different from “kiddy crack”, in that “kiddy crack” is actually chocolate milk) and so far, aside from a sedative effect, there hasn’t really been any impact on the episodes.

From here, we’re hoping to be discharged today, to continue giving her the phenobarb at home, while monitoring the seizure activity and following up in the clinic early next week.

Side note: I am all for gazing adoringly at my tiny baby, but do you know how exhausting it is to watch the baby constantly, to the exclusion of nearly everything else? Exhausting. It’s a good thing she’s so pretty.

If the phenobarb doesn’t work, we’ll try another medication. This we’ll continue doing either until something works, or she naturally grows out of the episodes, or the metabolic tests come back and tell us something.

The problem with Evie’s seizure episodes is that she’s not presenting like a newborn. Normal newborn seizures (usually benign, I should add) are different to Evie’s. Evie is presenting with seizure activity that is similar to something that shows up in 4-5 month olds.

She’s very advanced, obviously.

This is, of course , the reason we’ve done all of these tests, because she’s not presenting in a textbook fashion for the benign seizure disorders that show up in babies. Typical child.

Today when I see the doctors I will mention yet again the probability of Evie having Ehlers Danlos Syndrome (which, SURPRISE! can also be linked to a relatively rare metabolic condition] and see what they have to say.

But really, until tests come back, we can’t do anything except try and control the seizures.

(Or, seizure type episodes, as the doctors insist on mentioning, at which point I say that anything that alters my baby’s consciousness and causes her to have involuntary movements and limited to no responses during, is not normal, and I don’t care what we call them, can we just get on with fixing it? Also, EEG’s are great, but they’re not perfect and how do we KNOW that they’re not just originating from deeper in the brain? Where an EEG can’t pick up? I am probably too well researched for my own good here.)

So, that’s it Internet. An interim plan.

(Also, please let us get home today. This recliner is crap for sleeping.)

Update: HOME! We’re HOME.

That is all.

I would just like to point out that I haven’t stabbed anyone today. Nor have I shouted (except once, when Amy was incessantly pulling on my pants to get my attention instead of USING HER WORDS and that, my friends, is justified shouting), or thrown any crockery, or had a tantrum.

I mean, considering the circumstances, I am being VERY CONTROLLED in the face of extreme stress.

If you’ve guessed that today is the day for Getting Shit Organised, you’d be right. Unfortunately it seems that Evie’s medical teams are all busy with other patients and emergencies and yada yada and so far, no one has returned my calls.

My twitching, it knows no bounds. Neither does Evie’s twitching, but hers is entirely different.

On top of her regular seizures, it has come to my attention that I just don’t think she can see anymore. Except for bright lights – I know she can see bright lights, they are the only thing she responds to visually.

The last time she smiled at me, properly, was a few days before we noticed her seizures. No smiles since. She doesn’t look at my face, she doesn’t track with her eyes, she doesn’t follow our movement around the house. All things that she was doing prior to the seizure activity. Now, nothing. She also doesn’t blink if you snap your fingers in her face, or flick your fingers at her eyes.

Nor did she blink when Isaac nearly poked her in the eye.

I sat down in front of her yesterday and tried to catch her gaze. It wasn’t until I spoke to her that she responded, by jumping out of her skin and looking offended.

There is something called Cortical Visual Impairment which can go hand in hand with seizures.

(And something even more terrifying that causes seizures and CVI together, along with a few other markers Evie has that we’re waiting on the test results for, but we’re not thinking about that possibility.)

I need my medical teams to call me back so that I can announce to them that Evie isn’t seeing things anymore. So that we can get things moving.

Instead I am wandering around the house, unable to settle, waiting for phone calls.

[I know my medical team is very busy with an entire ward of paediatric patients, so I’m not terribly grumpy that they haven’t called yet. I’ll ring again in a few hours and see if I can catch them them. Our main Paed (working hand in hand with the hospital) has a full list of patients this morning too, so he’s busy as well. I’m just impatient and grumpy. Also, worried.]

UPDATE: Spoke to our Paed. We’ve been told to take Evelyn back to Emergency. Wish us luck.

It’s R U Okay day today and of course I’m not okay.

Because, this:

She’s absent for the first 40 seconds (notice the lack of blinking?) before the crazy eye movements start.

I’m not okay. My new normal involves holding my baby while she has seizures. It involves watching her for a lot of the day to make sure that she doesn’t choke when she vomits coming out of it (about 20% of the time). It is giving her supplements in the hope that it’s a deficiency causing her to seize (so far, no luck, but her doctor is organising for her to start a new supplement soon). It’s ringing the hospital to chase up what is happening with her test results and the specialists involved.

For the record, the Royal Children’s Hospital hasn’t gotten back to our team yet and I am resisting the urge to shout, because they’re so busy that one more patient is just a patient, but for me, she’s my BABY and I want answers yesterday.

Our new normal is going to be hospitals and specialists and watching the clock during a seizure to make sure that we don’t have to ring an ambulance.

It’s not knowing what is happening, because half of her tests haven’t come back yet.

Normal is knowing how to administer sucrose during blood draws and watching the bruises show on her skin later. It’s knowing that I won’t pass out during procedures, so they let me stay in the room to rub her head. Normal is so far from normal that I don’t even know what I’m doing, as I spend the days with Evelyn asleep on my chest because all she does is sleep and all she wants is holding.

Over two weeks into regular seizures, her body is getting tired. She’s still sleeping nearly constantly and her feeding is starting to suffer. We’re watching her closely to make sure she doesn’t go downhill fast, but it’s taking a toll on everyone.

I am not okay, because I don’t know that it’s ever okay to have to watch your baby have a seizure and to know that all you can do is hold her through it and clean her up when she gags at the end and loses half of her feed.

It’s going to be a few more weeks until the last of her tests start to come back and we’re in a holding pattern until we know what they show.

So am I okay?

No. No I am not.

And that is okay, because in this situation, it is perfectly fine to be not okay.

Are you okay?