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

East Side

Wow.  I have always known that Team Carly was an amazing group, and this weekend was more proof. On Saturday Team Carly East gathered for the New York City brain tumor walk.  Eighteen orange wristband clad friends made their way around Governers Island and we could feel the love coming from them all day long.  Team Carly East raised $3,170 for brain tumor research bringing the Team Carly total to $17,151! Thank you all so much, words really can't express how much we appreciate the support.

Carly has been feeling pretty good since her shunt surgery.  She has had some long periods of being awake and has been using her hands a lot, sticking them in her mouth more than I have seen in a long time. Over the weekend Christa spent a few nights away with friends and I got to spend my first solo nights with Carly. We had a great time together, and I couldn't think of a better way to celebrate father's day than with my sweet little angel.

Love,  Brad

Out Again

Carly's recovery from surgery is going well and she is feeling much better than yesterday. She was already back to smiling this morning and she was discharged from the hospital in the afternoon. I think she has set the record for quickest discharge from UCSF after a shunt surgery many times now, and it is a testament to how strong she really is. Let's go seventeen!

Love, Brad

Seventeen

Carly's surgery went well and she is now resting peacefully in a room on the pediatric floor. The procedure took about three hours, with the first hour being the placement of a central veinous port that we opted for Carly to get in order to make IV access easier in the future. This has always been a struggle with her, so hopefully it will help. After the port placement Dr. Gupta replaced the shunt valve and distal catheter, which were both clogged. He used the high protein valve this time around and we are hoping that number seventeen is planning on sticking around for a long time. Thanks for keeping Carly in your thoughts and prayers.

Love, Brad