Our girl is heading into a Morphin induced sleep.
That headache she was complaining about last night after surgery has continued being an issue through the night and this morning.
Tylenol and the codeine have not given her relief, so they are given her doses of morphin until they can figure out what’s causing this new symptom.
It’s concerning because it is a symptom of a Cerebral Spinal Fluid leak or infection ☹ I know our Hydro parents and followers are thinking the same. Please don’t let it be the case dear Lord.
We are waiting for Neurosurgery to come see Ceci to talk about this.
We received more troubling news this morning.
Ceci’s urine cultures came back and there’s heavy growth of Psuedomonosis. So she has a bad uti as well as the surgical site E-Coli infection.
Infectious Disease is working hard to figure out a new antibiotic regimen and schedule to treat all this and protect our girl from further spread of infection.
The biggest concern is stopping it before it gets to all the hardware that was just placed in her spine. If it were to get there Ceci would be in a very dangerous situation.
Unfortunately we found out that her back infection is resistant to penicillin class antibiotics. 😣
Ceci had to be placed back on 2 liters of oxygen through the night and this morning, but we were able to take her off a bit ago and she’s holding at 92-93%. Not exactly what we want but we’ll take a positive change.
We’ll discuss more with all of her medical team throughout the day and keep a close eye out for any changes.
In my last discussion with peds, I was told that we may have to prepare to take ceci’s home on some long term iv antibiotics.
Emotionally Ceci and our entire family is exhausted, worried, frustrated and very saddened that this is going on.
It’s very hard watching your child struggle and being helpless to do anything about it.
I’m continuing to be vigil in my prayers and holding on to my faith that she’s going to be better.
But honestly I’m having moments of anger…..
I’m angry that she didn’t get the summer she deserved- I’m angry that she missed her beloved Miss You Can Do It special needs pageant that she’s been happy to be part of for 7 years- I’m angry that she missed her favorite thing in the world: Camp Independence- I’m angry that she craves to be a regular kiddo and wants to just be able to go to school and can’t- I’m angry that our family had to cancel a much needed family vacation to Disney (we’ve never been able to take one ☹) in April because Ceci was in the hospital very ill- and more angry that she blames herself for that!- I’m most angry that she worries about our financial situation with all this going on.
No kid, I mean no kid!!! should be worried about their families financial well being because they aren’t well.
My mind is racing a million miles an hour filled with medical terms, diagnoses and what ifs and I feel like the world is going on without us.
So many people take for granted the ability to wake up in the morning and head to work/ school and do the same thing they do everyday. And Ceci and I dream about it more than anything.
It’s hard right now, but I’m not going to question all of this…
Instead I’m going to leave it in God’s Hands and hold on to my faith tightly that this is going to get better very soon.
Lots of love and hugs,
Alexis, Cecilia Marie and our Special Family 💜
~Spina Bifida Fighters and Survivor ~
915 8th street
Rock Island, IL 61201
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