Day 50 and Still Fighting Strong

Day 50…………..

I cannot believe that I am typing that out, but yes it is day 50 since the start of this medical battle that Ceci is in and honestly I am sad to say that we are not any closer to going home. We are days away from it being 2 months. 2 months!!!

How in the heck did we get here?

Ceci’s medical status board continues, to say TBD under discharge date and it is like a cruel reminder L

*sigh*……………. It’s beyond frustrating and saddening for Cec and the rest of our family. We cannot wait to get back home!

Dorothy said it best, and it couldn’t ring any truer in this situation- There is No Place like Home, There is No Place like Home!

Maybe if I tap my worn out mom sneakers together a big beautiful glittery (has to be Ceci statusJ) ambulance will appear and wisk us back home. LOL, I know crazy but I can dream J

Ceci is working with her school teacher and counselor right now so it has given me a few minutes to grab a coffee and sit out in the sun and it feels beautifully.

Our family is a big outdoors family so being stuck inside a hospital for so long has been a huge challenge for us. Especially with fall coming. Football, hoodies, bon fires, chili cooking and enjoying the autumn breeze are big on our list J Ceci and I have already been chatting about heading to the pumpkin patch with dad and the boys and the rest of our family and roasting marshmallows for s’mores.

Of course there’s also talk about one of our favorite holidays- Halloween J Ceci wants to be a Pink Lady from Grease, Aiden is going with Linus from Charlie brown and Nicky wants to be Bendy from the ink machine. The boys want to have a Halloween party at the house and Decorate in and outdoors. 

We have had a rough spring and summer. Fall is going to be better! We are going to keep telling ourselves that ❤

Tomorrow Ceci is scheduled for her next surgery. Surgery #60

She is scheduled around 4pm and will go in with her Neurosurgeon Dr. Linn to reculture the fluid that is starting to come out of her surgical site yet again, he will place an externalized shunt into her back to drain the fluid off of her spine and then explore her surgical site. It has been trying to come apart over the weekend and has had an increase in discharge.

There had been discussion about just placing the shunt in her back and having it drain into the same cavity in her body, that her brain VP shunt drained but of course that is a big risk that I feel like we should not take right now since she has tested positive for several different types of infections form that fluid buildup.

If she truly does have another infection in her spine and that is why the fluid is back for the 4th time, it would infect her Brain shunt and in turn infect her brain.

So for now the plan will be to have the tubing from the back shunt drain out of a tube that will come out of her left side and into a device to keep track of how much is coming out, if it is CSF colored again and keep track of the pressures.

Dr. Linn said we will have it drain this way out of her body for a week. Then next Tuesday we will reevaluate.

If everything is going better and the cultures do not grow anything bacteria wise, she will then have another procedure to place the shunt internally and then we could begin talks about her finally getting to go home.

So we are back to the waiting game. I swear this is the hardest part sometimes. Hurry up and wait another week L

Well guys I better sign out for now.

I lost my insulated tumbler that an amazing friend brought up for me, to make sure I am getting my own fluids down so I’m on the hunt. I have never had a cup keep my ice frozen overnight so I cannot bear to lose it J

I will be back to update as I can and will let you know when she heads back into surgery tomorrow.

Please continue to pray for pain control for sis and that she continues to be stable and nothing new pops up while we wait to see if tomorrow’s surgery will help.

Thank you dearest friends for continuing to share Ceci’s Journey and for bringing new Prayer Warriors and Good Thought Angels to join by our side and remind this sweet girl that we all have her Back! Don’t forget to hit Like to join #TeamCeciStrong

We are nearly to 8,000 strong! That is truly incredible

Lots of love, hugs and appreciation for you all,

Alexis (mom), Cecilia Marie and Our Special Family

~Spina Bifida Fighters and Survivor~

Caring for Courageous Cecilia Marie-

Thank you So much Grandma Cindy for my gorgeous Stranger Things Blanket ❤