Home 22q11.2 July 18th, 2021

July 18th, 2021

by Summerly Rowlands

Sunday, 7/18

When Izzy got her initial nasal tube placed, I asked if there was any way she could pull it out.

They said no.

So, Izzy pulled out her tube today.

We also dealt with another oxygen dip. This filled our room with doctors again, though it wasn’t anything near the code blue like the night before. 🙏🏼

After this happened, PICU called X-ray back in, they scared us talking about possible infections, they questioned whether she was having seizures again, they talked about putting the EEG back on and doing another spinal, they went back and forth and back and forth on her heart issues… Who communicates with who here? Does anyone know what’s going on, what Izzy’s already been through, or have any idea of a plan moving forward?!

I became extremely frustrated, which turned into crying and swearing.

I don’t even know what this X-ray is looking for, but thankfully it came back normal?! Izzy doesn’t have an infection, she’s still on antibiotics and she hasn’t had a fever since she aspirated. She’s NOT seizing. As her parents, we can tell you, as we already have, that THESE ARE NOT WHAT HER SEIZURES LOOK LIKE – SHE’S JUST STRAINING SO HARD TO POOP THAT SHE’S SHAKING. I won’t allow another EEG because all that’s going to do is confirm that she *does* have seizures and WE ALREADY KNOW THAT which is why she’s ALREADY ON MEDICINE FOR THAT. We are absolutely NOT doing another spinal, backed by the freaking NEUROLOGIST, so not even sure why you would bring that up out of nowhere. And if you’re going to continue talking about her heart, then bring in cardiology.

Everyone wants to say, “Oh nothing to worry about, nothing to worry about”, but then she has a little oxygen issue and all of a sudden it’s “Ohhh well she does have a lot of abnormalities so we really need to confirm this or that..” OKAY, then send in the necessary specialist. I’m tired of this fucking bullshit.

Unfortunately, hospital systems are pretty backwards when it comes to continued care on the weekends because there’s so many things that can’t happen on Saturdays and Sundays due to certain people not being available. It’s like patients don’t need any help outside of 8-5 Monday thru Friday…. so here’s how the rest of the day went…

We moved back to the neuro floor & the no nonsense neurologist came in. He stands by his order of no third spinal, and he told us that he will order Izzy an EEG for tomorrow (since today is Sunday…) *just to prove that the phenobarbital is working so that the other doctors will start focusing on the bigger issue at hand — GI — and stop blaming everything on her seizures*. He said Izzy needs to get her stomach taken care of because that seems to be the root issue with the throwing up and pooping… which is what Sterling and I have been telling everyone else since Tuesday.

GI was going to wait until Monday to replace Izzy’s tube (again, since it’s the weekend), but someone gained some sense and realized she wouldn’t be able to get her meds without that, so GI stopped by with the hospitalist. Now the NG tube is in for the time being until she can get an upper GI done tomorrow to look at her anatomy & see if we can get any answers as to why she’s having such trouble with her digestive system. And then IR can replace the NG tube with the longer NJ tube afterwards. Everyone has assured me that Izzy will be okay without formula today and she will remain on IV fluids and sugar.

Swallow study with speech therapy has ben pushed back again to Tuesday (no therapists on the weekends…). And then really hoping that after this we can remove the tube altogether and try bottles again.

Still no cardiologist, but I’ve literally brought up her echocardiogram to every person who has entered this room just to get all professional opinions, and it sounds like we truly are not overly concerned with her heart. Thank God there are no defects. There is one part that they may look into further in regards to the direction that her vessels turn to see if that could have anything to do with her eating problems, but that would not be a first step.

And no worries – what you can ALWAYS get done are blood draws… so those continue as scheduled multiple times every. day.

Current medication list: Phenobarb, Calcium, Calcitriol (aka Vitamin D), Vitamin B6, and now lactulose – finallyyyyyyy a constipation medicine!

And thank God for that because it’s definitely working! She’s had 3 good poops since it started.

Now she’s cranky and hungry.

After yesterday’s scare, Sterling & I began to create a playlist for our girl – lyrics that remind us of her & hit us deep in our souls – and melodies that seemed to ease her into much needed rest. Please feel free to listen here. Music is a love language for us and these songs brought joy, tears, relief, & tranquility during the storm.

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