Home 22q11.2 July 17th, 2021

July 17th, 2021

by Summerly Rowlands

Saturday, 7/17

At 1:45 in the morning, Izzy aspirated.

This was the worst day of my life.

We’re on the neuro floor. Izzy gets laid down in her crib to sleep. Sterling and I are trying to rest on the couch together. We’re laying there and we hear a sound. A choking sound. Immediately we both knew that wasn’t her normal. The monitor began beeping. I shot up, fumbled for my glasses, flew to her bedside.
She was blue.
She was covered in her own vomit.
She wasn’t breathing.

STERLING! Without hesitation, he frantically pushed the nurse call button. The monitor showed her oxygen levels sinking.
90, 80, 70, 60, 13
I’m sprinting to the door, I’m screaming into the hallway, “WE NEED HELP!”
Suddenly, our room is full.
Doctors, nurses, techs, surgeons, residents. One of the staff members pulls the call button out of the wall, sending an emergency alarm on repeat throughout the entire hospital: “CODE BLUE 7TH FLOOR NEUROLOGY”.
This brought up the PICU staff within seconds.
She’s being suctioned out. She’s given an oxygen mask. Her numbers are stabilizing. She’s starting to take breaths on her own. She’s taken off all food again.
She’s wheeled back down to the PICU floor where she can be a 1-on-1 observation.
Sterling & I numbingly pack up everything and follow.

We have no feeling & every feeling all at the same time.

After everything happened, Izzy came down with a fever. In addition to her IV, they inserted a PICC line (a peripherally inserted central catheter) and they put her on antibiotics. Finally, GI chimed in and said they want to try and get an NJ tube inserted into Izzy (longer than the NG – bypasses the stomach and goes straight to the intestine) since she aspirated with the shorter one. The thought was that her stomach couldn’t handle the feeds, but if the formula goes straight to her intestine, then she gets the nutrition without having to digest it. She will then get a chest X-ray to look at her lungs & to make sure that the NJ tube is placed far enough in. Against our thoughts & wishes, they’re stopping the use of suppositories despite the fact that Izzy is crying in pain from her stomach hurting so bad. GI said they would order an oral medication instead. Who knows how long we’ll have to wait for that…

Also met the endocrinologist. Since Izzy’s calcium is still low, her medicine dosages will be increased.

I guess all it took to start seeing some of the doctors we needed was to stop breathing.

Current medication list: Phenobarb for seizures, Calcium Carbonate, Vitamin B6, and now Vitamin D (Calcitriol).

Positives from today: no more glucose heel pricks since her blood sugar levels have been good (these draws have been occurring multiple times every day), able to stop fluids & start formula again (tube is in the right place), chest x-ray showed clear lungs despite the aspiration, fever is gone.

And my daughter is alive.

Our daughter is alive.

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