Extended Stay

Good afternoon dear friends and welcome back.

Thank you for coming back by to check on Ceci.

Ceci’s real sick and it sounds like we’ll be staying here at Children’s Hospital for a bit longer.

Pediatric Surgery is very concerned about her wound and we can’t let her go home until she begins to heal.

Her site continues to pour out fluids, burning her skin and causing awful pain to the wound itself.

Just imagine pouring hand sanitizer on a wound 😖 That’s what sis is going through over and over again.

Her pain management is the #1 priority for us right now. She’s getting around the clock Norco along with motrin to try to keep it tolerable.

Pediatric surgery is hopeful that she can heal without another surgery to her side, but it’s going to take time and she’ll need to be flat.

So the plan is to keep Ceci inpatient and in bed and as immobile as possible.

She’s on a clear fluids diet for the next few days and we will not even attempt to do her cecostomy flushes.

Pediatric surgeon wants to keep her for another week and see where we are after that time passes. If she’s not healing on her own we may need to surgically intervene.

Another problem that our girl is fighting, is a Urinary Tract Infection. Urology will become part of her hospital team and will come do a consult tomorrow morning to see what antibiotics she needs to be put on.

Neurosurgery is also part of her hospital team and has been following ceci since she had her head CT and shunt series done yesterday.

The shunt series looked okay but the head ct did show an increase in her ventricle size. Its not something that needs to be addressed at this moment but she will be followed to make sure her condition doesn’t worsen.

Dr. Lin (neurosurgery) will also be coming in tomorrow morning to see her. There’s been talk about the damage to her abdomen wall being an issue for her shunt.

Ceci has a VP shunt in her brain to control her excessive fluid accumulation caused by her Hydrocephalus. The tube drains off the excess cerebral spinal fluid from her brain and sends it to her abdomen where it drains and the body gets rid of it.

The big concern right now is that the acids and intestinal contents could make its way to the area that the shunt tube drains to, which in turn would be disastrous.

It would cause a major and life threatening infection to ceci’s brain.

They have brought up the possibility of needing to take ceci in the operating room to externalize her shunt until things get better. But of course there’s risks with this too. Including putting ceci under general anesthesia while she has the flu 😔

So as you can see things are complicated and confusing for all of us right now.

We will reevaluate everything tomorrow. For today we just need to let ceci get some rest.

Since we are looking at a longer stay for our sweet girl. Me and her dad have been on the phone all day trying to make arrangements for our boys and prepare for everything. We have so much to get figured out.

Ceci’s sweet friend Miss Cindy is actually on her way here to spend some time with our girl. She’s going to stay the night with sis and im going to head home to stay the night with our boys and get some more things together for our stay.

Things are very rough right now but we are going to stay positive about this and keep the faith that God has a plan and will see ceci through this all.

Please continue to pray for our sweet girl and send up positive thoughts for healing.

I’ll be back soon.

Lots of love and hugs,

Alexis, Ceci and family

~Spina Bifida Fighters and Survivor~


4 thoughts on “Extended Stay

  1. Ann Mosich April 7, 2019 / 11:26 pm

    Are we supposed to now unlike your Facebook page and please remind me of the name.

    On Sun, Apr 7, 2019 at 1:22 PM Ceci’s Courage Crew & Family Too wrote:

    > Ceci’s Courage Crew posted: ” Good afternoon dear friends and welcome > back. Thank you for coming back by to check on Ceci. Ceci’s real sick and > it sounds like we’ll be staying here at Children’s Hospital for a bit > longer. Pediatric Surgery is very concerned about her wound and we” >

    Liked by 1 person

  2. Sandra Buchanan April 7, 2019 / 8:19 pm

    When my Dad was hospitalized years ago for a traumatic brain injury, I stayed at the hospital over two weeks to be with him…and my lifeline was group emails each day to all who asked to be kept informed on his progress. It still is a tangible memory of that time. It was slow, he had a shunt and had to relearn even how to swallow, walk, talk and read again…at age 87. He came to live with us for five years. My continued prayers for all of you on this difficult journey.💝

    Liked by 1 person

    • Ceci's Courage Crew April 10, 2019 / 10:07 pm

      Thank you for sharing with us Sandra.

      I’m so sorry to hear your dad went through that. It’s so hard watching your loved one go through so much. And it can make you feel almost helpless.

      Seeing ceci be in so much pain the past week has brought me to tears many times. But being able to write about it here while keeping everyone updated had helped my soul.

      Thank you for continuing to pray.


  3. Terri April 7, 2019 / 3:59 pm

    Sending mybthoughts n prayers to all of you

    Liked by 1 person

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