Monday- 10-14 update

Good evening everyone and welcome back to sis’s page.

First and foremost ❤ much appreciation to you all for keeping Ceci and our family in your thoughts and prayers.

Also sharing our need for prayers as we continue to try to get her pain under control.

Today’s been a full work up day with many visits from Ceci’s medical teams and specialists.

They drew more blood lab work and are strategizing what could be going on within our sweet girls body.

So far the tests have revealed 3 problems that sis is dealing with, but they still don’t explain the awful pain on Ceci’s Right side.

  1. Ceci has a kidney stone in her Left Kidney.
  2. Ceci has a Urinary Tract Infection but we’re waiting on final cultures to see how bad.
  3. One of the screws in Ceci’s spine from her scoliosis Fusion- on the Left side bottom is out of place and resting on surrounding tissues.

Then to make things even more confusing Ceci’s back started breaking out in blisters/hives about an hour ago.

She has several running along the spinal incision site and the doctors do not know what caused it.

We haven’t used any lotions or creams on her back, there isn’t a dressing that could cause irritation and she has started any new medications. So the plan is to keep an eye on her for signs of the blisters/ hives spreading.

Orthopedic surgery came to see us shortly ago and let us know about the loose screw. At this time the plan is to leave it alone and keep an eye on her rods on the left side.

It would be too high of a risk to reopen her spine. We don’t want to end up with another 2 month hospital stay ☹

Since it’s the bottom screw on the left side it’s what was helping hold the rods in position. The good news is that the rods on the left side are still aligned.

Praying hard that her spine is beginning to fuse.

Regarding the kidney stone on her left side we are waiting on more tests to come back.

Nephrology ordered more labs today so it depends on what the results show us tomorrow. Then we will figure out a plan of action for removal or observation.

Infectious disease decided not to begin anymore iv antibiotics until we know the class of bacteria that she’s dealing with in her urine. Once classified we’ll know exactly which antibiotics she needs.

I know waiting seems like a crazy idea since she’s in pain but poor Ceci is often filled with antibiotics so her body’s antibiotic resistance is becoming more and more troublesome.

So we wait…..

That’s a big part of being a frequent flyer in the hospital. The waiting!

You feel like you spend most of your life waiting and impatience isn’t a common characteristic for us special needs parents.

Ceci ate a few bites of dinner and just fell asleep.

She’s exhausted and the past 2 hours everyone under the sun has came in to examine her, causing her increased pain.

The nurse gave her a dose of morphine and she’s resting.

Her appetite is still struggling.

She’s only taking bites here and there and her drinking has gotten worse 😖 according to her smart cup she’s only drank 8 ounces all together today. Very far from our daily goal of 50 ounces.

We’ll try again tomorrow.

Something that made our girl smile big today was a sweet gift brought in from Child Life.

A very kind woman- The Pillowcase Fairy 🧚‍♀️ made this special Halloween Pillowcase and brought it to the hospital along with some others to cheer up the kiddos.

Ceci loves it! And the best part was the sweet gesture inside the pillow case 😊 look at the pictures to see what I’m talking about. Really made my day.

The Child Life gals also took some time today to decorate the floor in preparation of one of our families favorite times of the year- Halloween 👻

That also made her cheer up a bit. It really is the little things that make this sweet gal smile 😊

Well dearest friends I’m going to hop into the shower and try to lay down myself.

Sounds like another busy day tomorrow full of decisions.

Be back soon.

Lots of Love, hugs and appreciation,
Alexis (mom), Cecilia Marie and Our Special Family 💜

~ Spina Bifida Fighters and Survivor ~


Fundraiser party for Ceci:

Also check out the amazing Iowa Hawkeye Wristlet filled with giftcards Raffle. It’s a few posts down and tickets will continue to sell until October 20th. Let us know if you’d like tickets please.

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