On Friday Carly was still not feeling great, so neurosurgery adjusted the shunt again and also tapped it to remove CSF to hopefully help relieve some pressure on Carly's brain. These two things helped and Carly did well over the weekend and we all had a few good nights sleep, but we could also tell that she was not feeling like herself. Today it seems like she is heading downhill a bit, so tomorrow we are going for a different approach and will try something we have been discussing with Dr. Gupta for the last few months.
To investigate the cause of the high CSF protein and ventricular inflamation that has been plaguing Carly for so long, Dr. Gupta is going to do a small biopsy of the ventricular wall and place an external ventricular drain (EVD) tomorrow around noon. He is hoping that the biopsy might provide some indication to the cause of the issue and help direct a new treatment option. The EVD allows them to closely monitor Carly's spinal fluid and provides access to flush the area and hopefully allow it to clear up and heal. While the EVD is in place Carly will have to be in the intensive care unit and it will be challenging to move her around, but hopefully it will help break this cycle she is stuck in. We expect that she could be in the PICU for a week, or possibly a bit longer, but we won't really know until the biopsy results are in. Please keep Carly in your thoughts and prayers and we all hope this will be a short and productive stay in the hospital.
Love, Brad
10 comments:
Here's to trying something new! Lots of positive vibes coming your guys' way. Hugs and Love -
Nikkie and Ryan
Your East Groupies are sending loving thoughts & prayers your way! Hoping this EVD does the trick!
love, xo, Beth & ECG :)
Of course, she's always in our thoughts and prayers. We will also be blowing kisses her way and envisioning the absolute best for everyone involved and especially "Baby" Carly.
Much love to you all
Sending hugs and prayers for a great new direction for sweet Carly! Keeping all of you guys in my thoughts and sending healing vibes.
Thinking of you and best wishes, I hope this provides some insights.
Wishing for a short hospital stay and a quick diagnosis and recovery. all my love.
We'll be sending lots of love and positive vibes in yours and Carly's directions and hoping Dr. Gupta can figure out a better plan to keep you OUT of PICU for good!
Sending love and good vibes for a successful procedure and short and easy PICU stay!
Sending lots of love and positive thoughts your way today and during the week ahead. Hugs to you all.
Thinking of a healthy Carly as I do almost every day when I see her face on my office wall. Sending lots of love your way!
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