Twenty

Carly went in for surgery at noon today, and they finished up just after two. Everything went smoothly, and Dr. Gupta found clogs in both of the catheters so he replaced all of the shunt hardware. The high protein in her CSF is still the culprit, as it has been for most of the shunts, but it has come down a bit over the last few months and we are hoping that trend continues. Carly is feeling sore, but she did just finish a bottle and is resting now. She has a lot of neighbors separated only by curtains, so hopefully everyone is feeling good through the night. We expect to be heading home sometime tomorrow morning.  Love,  Brad

Deja vu

Carly's symptoms didn't improve, and she hasn't really felt good for almost three weeks now.  For awhile it did not seem like a shunt issue, but as we headed into the weekend we were fairly certain that the shunt was to blame.  With it being a holiday weekend, both Dr. Gupta and Dr. Auguste were out of town so we were hoping to make it to Tuesday without Carly needing surgery.  On Saturday Carly was feeling terrible, so we went to the emergency room and the neurosurgery resident tapped the shunt and took off some fluid to relieve the pressure.  Within an hour Carly was felling a lot better, it was like night and day.  It was a big relief to see her feeling better, and to know that the shunt was at least a part of the problem.

While we were happy to see her feeling better, we also knew that taps only provide temporary relief so we here hoping that she would make it Tuesday or Wednesday.  Thankfully, she made it through the rest of the weekend without getting too bad, and she is now scheduled to head to the OR tomorrow around 11am to get shunt #20. We'll be visualizing another successful surgery, and hoping that this shunt wil last longer then the rest.  Thanks for keeping her in your thoughts.

Love, Brad

Under The Weather

Carly's school started back up last week and her teacher and aides were happy to see her, but she was clearly not feeling that great. She was very tired and slept through most of the day, but she did share a few of her cute smiles with her aide Cece.  By the end of the week Carly needed to stay home, as she was feeling increasingly bad.

We tried a shunt adjustment going into the weekend to see if that was the problem, but that didn't do the trick.  Over the weekend Carly continued to feel sick and sleepy, and while the symptoms seem a bit like a faulty shunt it is not quite the same.  Caroline, the nurse practitioner for the neurosurgery team, said that it is not uncommon for patients to start to show a range symptoms due to inflammation from radiation around 3 months after gamma knife treatment. The symptoms vary greatly and depend on the areas of the brain that were adjacent to the radiation.  Carly is now 11 weeks out from her gamma knife treatment, so it is possible this is why she isn't feeling good.  We will see how she does over the next few days, and keep our fingers crossed that she starts feeling a lot better soon.  Thanks for keeping her in your thoughts and prayers.

Love, Brad

Quick Exit

Carly rested well through the night, and the stars must have been aligned because we managed to get discharged from the hospital before 8am this morning. This was a first, and it wouldn't have been possible if Carly wasn't such a strong girl. As we got home and put her in her bed for a nap, I realized that only 30 hours earlier we were waking up in the middle of the night with Carly feeling terrible due to a clogged shunt. It is amazing to see how much better she can feel in such a short amount of time, and it is a tribute to Dr. Auguste for putting the plan for surgery to action so quickly after we called the neurosurgery pager.  Getting to spend the afternoon enjoying the sun in Sausalito was a big improvement over Saturday and a great way to end the whirlwind weekend.

Love, Brad

Nineteen

Over the last three weeks, Carly's shunt has shown intermittent signs of clogging. Unlike most times in the past, there were several moments when we thought a shunt surgery was just days away only to have Carly pull out of it with good days. This was a great surprise each time, but last night the symptoms of a shunt failure continued to intensify and a surgery was clearly on the way. We phoned neurosurgery in the morning and Dr. Auguste had Carly in the operating room by 2pm. The shunt was clearly clogged in a few places, and these parts were replaced. Carly is recovering well so far, and she has even cracked a few little smiles. We are listening to some bedtime tunes, and hopefully we will all get some good rest. I expect we will be able to go home tomorrow, and we are hopeful that shunt #19 will continue the trend of longer lasting shunts.

Love, Brad

Turn It Down A Notch

As you all probably know by now, no news tends to be good news around here.  Carly had her usual quick recovery from her last shunt surgery, in fact it was quick enough that she was up in Qunicy, CA at the High Sierra Music Festival only 24 hours after she was discharged from the hospital.  The festival was great for all of us and Carly seems to like all of the live music. Over the last week she started to have more fussy periods, and we were all awake on and off through the night. As this increased it still did not look exactly like previous shunt malfunctions so we were hoping for the best.  Yesterday Christa took Carly up to UCSF to have the shunt adjusted to a lower pressure setting.  This is a painless one minute process that simply takes the turn of a strong magnet against her skin where the shunt valve sits.  Within thirty minutes Carly was clearly a lot more comfortable and we all slept through the night last night. She had a good day again today and is sleeping now, so hopefully this shunt setting is just what she needed.

Love, Brad

Eighteen

Carly is out of surgery now, with shunt number eighteen in place. The surgery went smoothly and Dr. Gupta said that the valve was visibly clogged again this time. With this valve lasting even less time than the previous type he decided to go back to the original valve. The team will be discussing the options for trying to lower the protein levels in her CSF which continually clog her shunts. Hopefully we find some solution soon.

Love, Brad

Back Too Soon

Shunt seventeen didn't turn out to be the one. After only two weeks it is not functioning properly and needs to be replaced. We spent last night in the hospital and Carly is heading into the operating room in the next hour or so for surgery. They will wait to see which parts aren't working to decide what type of hardware to use this time around. Hopefully whatever is used can last longer than this one did.

Love, Brad