Home 22q11.2 July 15th, 2021

July 15th, 2021

by Summerly Rowlands

Thursday, 7/15

Got to hold Izzy one time throughout the night & rock her back to sleep. Had to stand to do this though because I couldn’t move her away from the crib due to the EEG and oxygen…

Speaking of EEG, it’s still on. It’s been on since about 7 pm Tuesday. From what we were told, Izzy could have it removed after 24 hours of no seizures. Her last seizure was 5:50 am Wednesday. It’s now been longer than the 24…

At some point, Izzy lost her umbilical cord. I wish she could have lost it at home… seems like a small thing, but it felt big.

Another “small” thing that felt really big – something happened with Izzy’s NG tube so they had to replace it. The whole process looks so unpleasant… I can’t watch them insert it even though I know it hardly bothers her.

And why not add one more stressor – Izzy’s blood sugar is low. Why? Probably because she’s been NPO (nothing by mouth) since 8 pm Tuesday… remember when I mentioned she was 6 pounds? A girl needs to eat. She’s not alert enough to take a bottle, though, so she’ll have to get formula through her nose tube. The nurse told us she would be on a “continuous drip” for this, but wouldn’t be able to start until after her procedure. Cue the IV electrolytes & sugar water.

It’s 12:30 pm, time for her second spinal tap. Ultrasound came and confirmed that there *is* fluid to test in her spine despite the attempt and fail yesterday. But now we’re being told that the regular PICU staff is going to try again…


We were told that radiology (IR) would be doing today’s spinal because they have specialized technology for better visibility and access. We will not sign off on anything or anyone else.

They say IR might be busy. Don’t care. We’ll wait. They reluctantly agree.

IR arrives to do Izzy’s spinal. It’s a sterile procedure so I have to leave the room (same as before). Sterling took this time to run home to do our laundry. He did this once every couple days – for his sanity & our cleanliness.

I put myself in a waiting room down the hall from Izzy’s room, but I swear it felt like it was taking forever. I got nervous. I had a gut feeling something was wrong. I called Sterling. Should I go back and check?? He told me to do what I felt I needed to. I moved to a closer waiting area. A few minutes later, I walked towards the desk where Izzy’s room sat across from. Curtains were closed so I couldn’t see in, but the PICU nurse was sitting in the doorway. She saw me, looked distressed, and just shook her head no. What does that mean?!

After about 45 minutes, the doctors & nurses are done, Sterling is back, & everyone tells us that the spinal went well. Although, due to the position they had to scrunch Izzy into, her IV came out, which meant they had to poke her artery for the blood they needed today. This time they told us that PICC (aka a specialized team for IV lines) was going to replace her IV.

Oh, so you *do* have a specialized team that could have helped us last night? Noted.

Also to note –
Constipation is still horrible.
So is reflux.
Izzy is in extreme pain.
Her stomach is rock hard.
Sterling and I ask (and eventually ask again… and again…) for either a dietician or a GI doctor.
We get neither.

What we do get though is a speech therapist. For a baby. Okay.
Everything they want to do will have to wait until tomorrow because Izzy isn’t alert enough today.
Would you be?

She was able to be taken off oxygen around 9:30 pm, though. HUGE relief.

Current medication list: Keppra & Phenobarb for seizures (getting through IV), Calcium Carbonate since bloodwork showed low levels (getting through tube), and Vitamin B6 (getting through IV). Still unsure whether Izzy is B6 deficient or not because the test didn’t give us much information, but the neurologist wants her to take the vitamin just to be on the safe side.


Before the day is over, we see the confusion set in. We see the whispering, the private phone calls, the heavy pacing and nervous anger. He said, she said, blah blah blah. People pointing, people blaming, people making sure their names are cleared.

Sterling and I look at each other. We were trying to piece together the puzzle since no one was sharing with us. “Excuse me… did something happen?”

Yes, something did happen.
And there is no excuse.

When the medical staff did Izzy’s second spinal tap today after the first one failed yesterday, the entire team missed a group of 5 tubes that were sitting on the counter to collect fluid into. Now they need to do a THIRD spinal tomorrow. Which again means no food after midnight & a third needle in her back in three days.

There are no words.

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