Tuesday, November 22, 2011

Two Dozen

Shunt 23 was not the one. Only six days since her last surgery, Carly was back in the OR today for another shunt revision. We started noticing symptoms of a shunt failure as we headed into last weekend but we were really hoping that it was simply a slow recovery from surgery. It became clear this wasn't the case yesterday and we needed to have neurosurgery tap the shunt and remove some fluid to help Carly be comfortable through the night. Today Dr. Gupta found that the valve, despite its German engineering, was obstructed as was the peritoneal catheter. He replaced the entire system again, using the custom aluminum ventricular catheter with a new valve type that Carly hasn't had before. This cycle that Carly has been stuck in is a real test of our patience and faith, but we will never stop envisioning her feeling great and reaching her full potential and Team Carly will not be deterred.

Love, Brad

Thursday, November 17, 2011

Custom Made

Carly had a tough night on Tuesday and clearly needed to have surgery yesterday. She went into the OR around 4 yesterday afternoon, and everything went smoothly. The procedure took two hours and Dr. Gupta was able to replace all of the old hardware with Carly's new custom setup. She rested well overnight, with her biggest problem being a really sore throat from intubation that made it hurt for her to swallow. The sore throat has improved this morning and Carly is eating well now. She will be discharged soon and we'll be heading home, hopefully for a record setting run with shunt 23.

Love, Brad

Tuesday, November 15, 2011

Blocked Up

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