Home 22q11.2 July 26th, 2021

July 26th, 2021

by Summerly Rowlands

Monday, 7/26

14 days in here & maybe we’re getting somewhere?

Neuro is taking Izzy down from 2 daily doses of Phenobarb to 1. This change will last for 1 week. If all goes well & we see no seizure activity, then that single dose will decrease in amount after a 2nd week. In the 3rd week, she *could* be off of it all together! The reason for this weaning is because Izzy’s seizures are believed to solely be caused by her low calcium and not any type of seizure disorder.

They stopped giving Izzy the Vitamin B6 when they figured that wasn’t the cause for seizures. And thank goodness because that was given through her NJ tube and it kept clogging it, which meant they had to replace the tube again and again. I think all together she’s had about 9 tubes in & out between the NG & NJ…

New med: Pepcid. FINALLY!! A reflux medication. I guess it won’t stop the throwing up, but it WILL ease the burning feeling for her.

Current medication list: Phenobarb, Calcium, Vitamin D, Lactulose, fungal cream, diaper cream, Pepcid

Today we met with the hospitalist, plastics, speech, and genetics.

Hospitalist confirmed that the hard tissue in Izzy’s breast is indeed lactation and not an infection. It should go away on its own. PRAISE.

Plastics (the plastic surgeon) does not feel any type of cleft in Izzy’s mouth or palate. He told us there is nothing to be overly concerned about at this time. She does have a slightly smaller jaw than normal, but it doesn’t measure small enough to need surgery.

The surgeon again mentioned a possible sleep study for her breathing concerns, but that wouldn’t happen until after the nasal tube is out. Then again, breathing might just be something that her body needed more time to learn how to do. Because HUGE win – over the past day, her oxygen levels have remained stable!!

Plastics also informed us that we will not be adding ENT to our care team at this time unless the need comes up in the future.

With speech therapy, Sterling & I are over it. This type of “therapy” does not feel helpful at all at this point. One of the therapists is completely judgmental and unpleasant. I get irritated every time I see her face. I’m pretty sure she’s about 19 years old and has never held a baby. She’s extremely text book and follows a one-size-fits-all strategy and that’s not our girl.

So now we’re doing things our own way with feeding, and it seems to be working better. Time will tell, but we’re up to offering 60 mL by bottle every 3 hours and down to just 8 mL every hour by tube. She *has* had two choking & throwing up episodes since switching to the PM 60/40 formula, but WAY more good feeds than bad. For now, Izzy will stay on this formula because her phosphorus level came back good and we don’t want to risk it becoming too high again.

On the genetics side of things, we still don’t have many answers. With DiGeorge, a lot of the symptoms and issues are on a time-will-tell basis. But we did find out that we can continue to work with this geneticist even if we transfer to a different hospital…

After discussing things with Sterling, we are going to move Izzy’s outpatient care to either Rainbow Babies in Cleveland or Nationwide Children’s in Columbus. My mom’s uncle is a pediatric surgeon at Rainbow & he wants to help us and make sure Izzy gets the absolute best care. Nationwide has an actual DiGeorge clinic… We will do our research, talk to who we need to talk to, and make our decision when we leave here.

We’ve actually been pretty vocal about wanting to switch hospitals. We’ve spoken to the geneticist about it, one of our daily nurses, one of the hospitalists, and even a patient advocate here, who was extremely disappointing in his efforts to help us. We met him one time, explained our situation and how we felt unheard by the medical staff and why we needed his voice and his support. We even went into detail about the medical errors made on our daughter. He said he would talk to someone, a charge nurse maybe, but then we never heard or saw from him again.

We will continue to be our own advocates.

We will continue to be Izzy’s advocates.

“While you certainly couldn’t have foreseen everything you guys would experience in these past weeks, I hope you realize how much you’ve already helped Izzy by making yourselves so educated and informed and being the biggest and best advocates she could ever have.”

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