Twenty Six

The lump of coal in this years stocking was another shunt revision for Carly. She wasn't feeling great the last few days and she had a particularly bad night last night. Much to our dismay, it was clear that the shunt was not working properly. We headed to the emergency room around 9am and spent much of the day there. At 5pm the operating room opened up and Dr. Auguste performed the revision. He found an obstruction in the ventricular catheter that was just enough to block off the flow. He replaced this catheter and Carly is now resting peacefully in her room. One promising piece of news is that the inflammatory markers continue to be low, and the protein levels have dropped by 20% in the last week. The protein is still very high and not yet to the sweet spot for not clogging but it is headed in the right direction.

Love, Brad

Holiday Shunt

We continued to pump Carly's shunt regularly to keep it flowing, but a few days ago the reservoir stopped refilling meaning there was a complete blockage. Carly had not been feeling very good for several weeks so we knew a surgery was not far off, and today was the day. Carly headed back to the OR at 10am today for her 25th shunt revision.  Dr. Gupta replaced all of the shunt components and he said that there was an obvious clog in the ventricular catheter. He said that the other components did not look quite as bad as they typically do which could mean that things are improving. 

The protein levels are still high, at 660 when 50 is normal, but they have been stable or coming down a little and it is a long way from 1700 where it was at one point. There is a cell type that is an indicator of inflammation and this has dropped from 20% of the total to 1%. This is a major improvement and hopefully an indicator that the problem that has caused inflammation and high protein may be starting to resolve. Only time will tell, but it is all that we want for Christmas. Speaking of Christmas, it only seems fitting that shunt 25 falls on this week. The Christmas shunt of 2011 will hopefully be what Carly needs to get back to her smiling self for a Happy New Year.

Love, Brad

Big Sister

Carly has been having a mix of  good days and bad days over the last week. Her new shunt is not flowing as well as it should due to her high CSF protein and we can tell that her internal cranial pressure is getting higher. The most recent shunt has a large reservoir that is a silicone half sphere under her skin. By depressing the reservoir we can force flow through the shunt and help keep things flowing. This seemed to be helping, but over the last few days she has become more and more tired. We had neurosurgery tap the shunt this afternoon to remove a decent volume of fluid to help with the elevated pressure. Our hope is that this, along with pumping the shunt more frequently, will help get some more longevity out of this shunt. We will see how she does over the next few days and we are hoping for some good flow.

The big news is that Carly is now a big sister. Her new little brother was born at 5:37am, weighing in at 9 lbs 15 oz. Kempton Tyler Nelson gets his first name from Christa's grandfather Kempton "Mac" McCarthy and his middle name from our dearly missed friend Tyler Palmer. Christa said she wanted the names to come from truly good men, and both of these men definitely fit that description. Kemp and Christa are both doing well and we are expecting to head home tomorrow. We are very thankful for our families who are taking care of Carly at home while we are up here at the hospital. 

Love, Brad

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

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

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

Sigh Of Relief

Just after 1pm this afternoon Carly was discharged and we all finally walked out of the hospital doors together. Carly was full of smiles as soon as we got home, and she is resting peacefully in her own bed now. You would think that I wouldn't be surprised by how incredibly strong our little girl is after all she has been through, but still she never ceases to amaze me. She is so special, and we hope that a long stretch of good luck is coming her way.

Love, Brad

Deuce Deuce

Carly headed into the OR for the third time of this admission around 1:30 pm.  Dr. Gupta removed the EVD system and placed a new shunt, number 22. He made a few adjustments to the inlet holes in the catheter hoping that this might help keep it flowing. We are back in our room now and Carly is already eating well and smiling. We are hoping for a quiet night and we should be heading home tomorrow. Now all we can do is hope that it keeps flowing.

Love, Brad