Sayla’s Successful Day of Procedures – Cincinnati Children’s Hospital Medical Center

“Girl you my Hunny, cause you’re busy as a bee.” – P Diddy (the hubs)

January has been packed full of both exciting and scary stuff. This mama has been running nonstop.  We finished off this month strong though with a day full of procedures for Sayla at Cincinnati Children’s Hospital Medical Center (CCHMC).

Sayla had three procedures done under anesthesia.  We are so thankful the physicians worked together and that the scheduling department was able to organize it all on one day!  Below is a lost of her procedures and outcomes:

1. EGD (Esophagogastroduodenoscopy – I’m a nurse and had to google the spelling)

This is an upper GI scope, and Sayla’s gastroenterologist ordered this to assess the status of her upper digestive system, and take a closer look at her hiatal hernia to see if it requires surgery.  She doesn’t seem to be symptomatic from the hernia, so we have decided it is not in her best interest to “fix” it at this time (hallelujah, one less operation).  Her GI nurse emailed us this past week and said the biopsies taken during the scope were within normal limits.  All good news!

2. Botox and Phenol Injections

Sayla has been getting Botox injections every 4-6 months for the past few years from her Rehab Medicine Physician at CCHMC.  This is to relax her muscles where she has spasticity and high muscle tone. There is a limit as to how much Botox a person can receive (just say no to botulism) based on their weight, and Sayla has maxed out the dose that is allowed.  Unfortunately, this is not enough medication to cover all of her large muscle groups that need to be loosened.  This time Rehab Medicine decided to add phenol injections to the Botox.  Phenol injections work a different way, but the outcome is the same in most patients.  These injections are very painful and a person has to be completely still while receiving them, so these are done under anesthesia in children.  We saw immediate results the next day from these injections!  Her arms were dangling down at her side while in wheelchair, and her legs were relaxed making diapering so much easier.  We are thrilled with the results.  She was also able to reach up and play with her hair for the first time ever (see Vlog).

3. MRI of brain (w/wo contrast)

Sayla has an MRI of the brain annually.  This is ordered by her Neuro-Oncologist at CCHMC.  They want to look for any reoccurring brain tumor.  Her tumor was removed when she was 5 days old, and has never returned in the past 8.5 years. Since there is still a small possibility, her physician is diligent in checking.  Sayla has a VP shunt, so the MRI also checks to see if the shunt is functioning properly, and is working to prevent hydrocephalus.  Her MRI results were stable, with no change from her last imaging.  We are thrilled to hear this, of course!

I hope you enjoy the Vlog that captures some moments from our day at CCHMC, and the process of Sayla’s procedures.  Thank you for reading and watching!!  We are constantly blown away by your love and support for our girl.

 

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