Tuesday, December 27, 2011

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

Tuesday, December 20, 2011

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

Thursday, December 8, 2011

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