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Sep 1, 2020 Latest post:
Sep 19, 2020
Welcome to our CaringBridge website. We are using it to keep family and friends updated in one place. We appreciate your support and words of hope and encouragement. Thank you for visiting.
If you’re on this site, you know and love Charay. Charay is a story that I don’t have enough time to write today. It would take months at a minimum to tell you about this young lady and her amazing strength, fortitude and purpose. While her life certainly hasn’t been easy, it has definitely been richly blessed. Likewise, she has been a blessing to others. Before you ask, I am not biased because mother’s can’t be biased. That’s my story and I am sticking to it.
I am here to share information regarding Charay and her recent health struggles. It will be easiest for me to share in this space as opposed to having to send a multitude of texts or numerous phone calls to keep everyone updated. I am hopeful that this will be a short lived site and that Charay’s treatment and recovery is a speedy process.
On Thursday, August 20th, Charay awakened in pain and wanted to lay in bed. This was totally unlike Charay who likes to get up and get her day started. I gave her some ibuprofen and went to work. Upon returning home, Charay’s nurse informed me that Charay had a stiff neck. Upon further examination, concerns about her shunt (previously uneventful for 22 years) was thought to be malfunctioning. A trip to the ER ended in emergency shunt replacement surgery early Friday morning. After a brief hospitalization, Charay appeared to be adjusting to this new shunt well and we were discharged home. The following Friday, I became concerned because she appeared to have a headache and had difficulty holding her head up to make eye contact. Another trip to the ER confirmed the start of another shunt failure.
The neurosurgery team at Children’s have worked very hard to uncover the reasons for this shunt failure. Charay has had every imaging and blood test you can imagine and is currently on 3 antibiotics. Testing of her cerebrospinal fluid has revealed a bacterial infection that is typically found in poop. No explanation given as to how this bacteria entered into her csf, but I have a few ideas.
I will do my best to update this story and keep in communication with everyone. Please be patient. I’m going to try to work as much as I can and also balance my role as mom and advocate for Charay. All prayers, positive vibes and energy accepted,