While we were ready for a long calm period, the shunt roller coaster continues. Carly had a good period after her last surgery, but then over the last week or two we could see that things were changing. We were hoping that it was something that would pass, but it is very clear now that shunt number 22 is obstructed and on the way out. Neurosurgery tapped the shunt yesterday which offered some relief, and they sent the CSF for the usual testing. The protein levels have some back up, but still not to the all time high points of the past so there is a chance that the protein is slowly coming down.
For the next revision Dr. Gupta is going to try a few new things, as the current system is clearly not working for Carly. He had a custom ventricular catheter fashioned out of aluminum, rather than the typical silicone tubing, as it is inert. In the chance that the high protein is related to an allergic reaction to silicone, this could help bring it back to normal levels. I also tracked down a German shunt manufacturer that makes a valve out of titanium, with slightly larger flow paths, that could potentially help keep the flow up. These have been special ordered to UCSF and Dr. Gupta will use this along with the new aluminum catheter. We are hoping that this new system will help break the cycle that Carly has been dealing with for quite awhile now. Surgery time isn't set yet but it may be as early as tomorrow afternoon, or possibly Thursday. We'll keep you posted and are thankful for all of the love and support for little c.
Love, Brad
7 comments:
way to track down those new parts, brad! best dad ever. I hope they work for lil c! Will be keeping you all in our thoughts. xoxo
Brad and Christa: Team Carly for sure. Nice work, Brad. Here's hoping it works well for little c. I have high hopes!
And thanks so much for the detailed update. It's good to know exactly how to focus those positive thoughts!
We're keeping our fingers crossed that aluminum is the ticket to keeping protein levels down.We'll envison free flowing CSF through the german valve.Das ist gut!
Love from Ann Arbor.
Let's hope that German engineering does the trick - good researching, Brad! Keeping you in our thoughts.
xo
Jen L.
Hoping the new system is THE system for sweet Carly. Thinking of you all and sending love.
Hoping that these new things do the trick this time. well done tracking down an alternative-material shunt! Fingers crossed that it's just what sweet Carly needs! Sending you all lots of love and prayers and keeping Carly in our thoughts always.
That sounds like a great plan and I'm thinking of you guys!
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