Home 22q11.2 July 25th, 2021

July 25th, 2021

by Summerly Rowlands

Sunday, 7/25

Results came back good on the CT scan – no sling thank God. Finally someone gave us some clarification on Izzy’s heart “abnormalities”. Apparently hers is built differently than a typical body’s in regards to the directions of her vessels (which was briefly mentioned to us a week ago with no follow-thru or explanation), but it should have no issues functioning just the same.

We also increased her bottle feeds to 30 mL every 3 hours instead of every 4 hours, and we decreased her tube feeds to 15 mL every hour instead of 20 mL.

It just always seems to be, “Well good news!”, followed by a laundry list of more things we need to worry about.

So far Izzy has tried Similac Advance, Similac Sensitive, Similac Pro-total Comfort, Similac Alimentum, & now we have to switch yet again because her phosphorus is too high. The new formula is a specialized prescription called Similac PM 60/40. It’s phosphorus-free, but also low in iron…

With the first feed of the new formula, Izzy had another episode with her oxygen dropping too low. And now she’s throwing up. Non. Stop.

This feeding/breathing issue is the #1 problem right now. Everything else could be managed at home with meds & outpatient visits.

Not this.

Sterling & I are still hoping that it’s just bad reflux that will eventually go away, but the doctors here want to run every freaking test to rule out these horrific sounding problems.

I get that it’s good & necessary to rule out concerns, but Jesus, with all these tests it’s like we’re setting her up to fail. There’s too much going on with and in her little body, which is already termed “abnormal”.

Tomorrow we have to meet with speech (to observe a feed) and genetics (to go over the DiGeorge results & ask our questions – even though it feels like we still won’t get the answers we’re seeking), and then new teams will join in – ENT and plastic surgery.

ENT is supposed to check Izzy’s throat for reasons as to why her reflux is so bad and make sure there’s nothing blocking any ear, nose, or throat tubes. Plastics is coming on board to check that Izzy doesn’t have a cleft palate that may not be visible to the eye. If she does have a cleft palate under the roof of her mouth, that might be a reason for these eating & breathing issues.

There’s also talk of possibly doing a sleep study and a pH test.

And shocker, the reflux and breathing issues could just be a side effect of her having DiGeorge, but no one has any answers.

If any of these medical professionals knew anything about Izzy’s syndrome or had done any research like I have, they might agree with me that the possibility of DiGeorge being the reason for her feeding & breathing symptoms is pretty high… but sure, why not put a 24-day-old infant under 92 more needle pokes, blood draws, & procedures.

Another “small” thing we’re dealing with is a mass in Izzy’s right breast. No clue where this came from. The doctors are going to take a culture of it to make sure it’s just lactation (apparently this happens with baby girls) & not an infection. Infections, fevers, and illnesses are always going to be much more serious for Izzy than another person her age.

“My mind is numb and I’m just going along with these conversations. Every conversation there’s something else. Waiting on CT results, finding a lump in her breast, waiting on doctor after doctor, switching formulas, numbers are off again, not able to eat or breathe properly, some specialists saying to add rice cereal to her bottles, others saying absolutely not because it causes diabetes and food allergies, etc, etc, etc. I’m tired. I don’t want people talking to me. I don’t want people asking me questions. I don’t have answers. We don’t know anything and neither does the staff. All we know is she has DiGeorge and we don’t even know what that means.”

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