Home 22q11.2 July 14th, 2021

July 14th, 2021

by Summerly Rowlands

Wednesday, 7/14

The frustration begins.

At 1:40 in the morning, I texted my mom, “The medicine isn’t working. She’s still seizing, and no one seems to know what the fuck is going on.” (Excuse my language, but there’s going to be a lot more where that came from…)

And that’s exactly what it felt like, and it was this very first night where we realized that third shift staffing was not for us. The doctors we needed weren’t there and the nurses didn’t have answers to any of our questions. Everything was, “I’m sorry, we really don’t know”.

My newborn daughter is laying there in an oversized, barred-in crib, hooked up to 24 wires, a heart monitor, an oxygen tube, an IV in her little foot, just seizing over and over and over… and you’re “sorry”, you just “really don’t know”?

Fuck you.

First of many sleepless nights. How does a parent sleep when their baby is having seizures? How does a parent sleep when there baby is on oxygen? How does a parent sleep feeling so helpless? How does a parent sleep not having answers? At this point, she was hooked up to too many things to even hold her.

So we just stared. At her. Into space. At the ground… Also not the most comfortable situation when the *vinyl* couch is barely wide enough for 1 person and the recliner can’t recline because there isn’t enough room. GET ME OUT OF HERE.

It was now 5 am and a doctor finally showed up. I was emotional, I was frustrated, I was tired. I told this doctor that whatever they’re doing, whatever they’re thinking – it’s not working. Sterling then took over, as it was evident I was crumbling. He asked a lot of questions and thankfully got someone to allow us to speak to the neurologist on-call. She called in around 5:30, told us that she was tracking Izzy from wherever she was (home?) and agreed that her seizures were still happening way too frequently. She wanted to try a third medication – a stronger medication – since the other two weren’t doing what they were intended for.

We were warned that this third medication had the risk of stopping Izzy’s breathing which would put her in the ICU…. but crazy enough, the reward outweighed that.

When first shift came back on, (🙌🏼), they told us that ever since the 5:30 medication change, Izzy only had one seizure at 5:50. Thank God – it was working… and she was still breathing. We were told she could have the EEG removed once she’s 24 hours seizure-free. Let the clock begin.

But of course we have to pause the clock because getting an MRI means having to remove the EEG – only to be put right back on afterwards…

Another thing we learned – all tests, procedures, scans, transports, rounds – literally everything – is a waiting game. So while we were waiting… and waiting… for the MRI, we were also informed that Izzy would be getting genetic testing done.

Genetic testing?!
*My mind flashed to the 20 week ultrasound.*
But everyone told us there was no concern.
We’re good.

Around noon is when the anesthesiologist met with Sterling & I to begin prepping Izzy for her MRI.

But now we were told that she would also be getting a lumbar puncture (aka a spinal tap) to examine her spinal fluid during the time of the MRI since she would already be sedated…

And then they would get to her bloodwork for the genetic screenings (along with literally everything else that blood could possibly test for)…

Oh and the neurologist wants to see if she has a vitamin b6 deficiency causing her seizures. She needs to be in the PICU (pediatric intensive care unit) for this test (pyridoxine test) because it’s too risky to complete anywhere else.

There’s so much going on.

But hoping to God these seizures ARE just a lack of b6… we will see.

pLoT tWiSt
(another thing we learned would happen a lot…)

It’s 2 pm. Izzy was able to get her MRI without being sedated, so *now* is the time for her spinal and bloodwork (and to put the EEG back on). Apparently the spinal can also be done without sedation because the PICU staff says they can just numb her.

Great news: MRI results show no abnormalities in her brain! ❤

Bloodwork results: T cell deficiency (TREC) confirmed (which was the original issue from her newborn screening), but everything else has come back normal with the exception of a low level in calcium, so they’re going to redo that test. The wait for the genetic results, however, could take up to two weeks.

Still unsure why the seizures are happening, but the vitamin b6 fluid is currently flowing into her IV & we will get those results later on.

Unfortunately, Izzy’s spinal tap was unsuccessful. They could not get to the location they needed in order to get her spinal fluid out. She will have to get a SECOND spinal tap tomorrow. This time they will have IR (interventional radiology) do the procedure because their technology allows for easier access…

Why wasn’t that IR team called from the start?

Izzy weighs a little over 6 pounds. Today alone she’s been connected to an EEG (twice), breathing solely due to the help of oxygen through her nose, she’s had active seizures, 3 new medications have been put into her system, she’s undergone an MRI and a spinal tap, she’s had an IV placed, multiple vials of blood drawn, and a pyridoxine test completed. She’s exhausted. She’s not doing well. She’s now on a warming blanket because they can’t get her temperature up. They tried to give her oral medication for her low calcium, but she started choking and couldn’t swallow. I told every single person here about her choking issues… no one listened to me. Now to add to the list, they’re going to insert an NG (nasogastric) tube in through her nose down to her stomach so that she can take liquids – calcium & electrolyte fluids to start. She’s still NPO. No food.

“She looks like death on the table. It’s horrible.
She’s so weak. Completely defeated and deflated.”

The day is almost over. The tube is in, but the PICU staff is determined to place another IV. They say she *has* to have more than one on this floor. The nurse keeps trying and failing, trying and failing, trying and failing. 9 failed pokes on a lifeless infant. It’s unbearable to watch.

I asked if we could be done messing with the IV. The nurse told me no.

Sterling asked for a specialized IV team to try. The nurse told him no.

“We don’t have that on the PICU because we all do lines all the time.”

All I can do is rub my daughter’s little body and try to give her her pacifier.

She thankfully falls into a deep sleep.

The nurse never got the second IV.

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