Slowing The Flow

Carly continued to have trouble adjusting to her new shunt, and for the first time ever the issue was too much flow when she is upright. Thanks to the new, larger tubing the shunt is working but the valve we have been using was purposely chosen to be as simple as possible and did not have a component that prevents over draining when upright. Carly was not able to adjust to this low pressure and she could not be upright for more than 10-20 minutes before she would start having what looked like seizures. Over the last few days she was getting worse, so today she headed back to the OR for a new shunt valve. This valve has a mechanism to prevent over draining and it is also has several pressure settings to fine tune it to her needs.

The surgery went well and Carly is resting in our favorite room at UCSF. She is still having the seizure activity that we saw before surgery, which we hope is just part of re-adjusting to a more normal pressure. It has been a tough stretch for her recently and hopefully this is the beginning of an improving trend. We are envisioning her with a smile on her face, a big appetite, and able to get out and about to spend time with her friends and family. Her strength, and the strength of Team Carly, will help get her there.

Love, Brad

Missed

Carly has been slowly recovering from her most recent shunt surgery and pneumonia. Her respiration sounds much better and is nearly back to normal. The new larger shunt tubing seems to be making a difference, and when Carly is sitting upright we think it is flowing briskly. This is affecting how she feels too, so it is a matter of trial and error as we figure out how long she can be upright and when we need to lay her flat. Hopefully this is something that she grows accustomed to over the coming weeks and she can be upright as long as she likes. It is nice seeing her more awake and smiling more each day.

January 27 is a day that we will always think of our dear friend Tyler Palmer. Five years have now gone by since the day we all lost him. He meant a lot to many people, and we miss him terribly. He was a great son, brother and friend and I am proud that our son Kempton can carry the middle name Tyler. In honor of him go enjoy the outdoors, make a conscious effort to do something that helps our planet, give someone a big heartfelt hug, and take a step toward following your dreams. We love you Tyler.


Love,

Brad

Something New

In the days since Carly's birthday she has continued to be under the weather. The antibiotics may have been helping her pneumonia, but she continued to be really weak, sleepy and had little interest in eating or drinking. By yesterday morning we decided we couldn't put off a shunt surgery any longer. She went to the O.R. yesterday afternoon and Dr. Gupta replaced all of the shunt hardware. This time he tried something different, replacing the belly catheter with tubing that is typically used for drainage of abdominal cavities. The tubing is a lot larger in diameter, with an area that is over 6 times larger than shunt tubing. The hope is that this larger area will prevent the tubing from clogging, giving Carly more time between shunt revisions.

Carly has been recovering well, with things being a little more complicated because she is also fighting off pneumonia and a case or rhinovirus (the cold.) Because of these other issues, Carly spent last night in intensive care (the PICU.) We are still there now and will be here for another night. If she shows improvement tomorrow she will be sent home to continue her recovery there. It is good to be trying something different that shows promise at helping address the shunt clogging issue. Hopefully this is the beginning of a long stretch of better days for Carly.

Love,

Brad

They Say It's Your Birthday!

I will start off with the most important news of the day, our beautiful little girl turned 5 today. It is hard to believe that Carly is 5, I can still remember her first days at home like it was only a few years back. She is the strongest, most resilient and most angelic person that I know, and since the day she was born she can brighten anyone’s day with just a smile. She has been given more challenges in five years than most would see in 20 lifetimes, but she bounces back time and time again. I love her more than words could ever say.

The tough ride has continued since my last post. Carly hasn’t gotten back to feeling like herself since her last shunt surgery on 12/22. We did have the good fortune of getting to spend Christmas Eve with Christa’s family and we made it to Michigan on Christmas day to spend time with my family. It was great seeing both of our families and we were very thankful for the time spent with them. The trip to Michigan wasn’t easy for Carly though, and we had to leave early to get back to the hospital at UCSF.

We spent 12 hours in the emergency room on New Year’s Eve day, and it turned out Carly was battling a urinary tract infection. We were admitted to the hospital about 30 minutes before midnight and we ushered in the new year with some champagne and tunes from past New Year’s Eve shows. After three days in the hospital Carly was feeling much better and we headed home. Since then Carly had continued to have trouble getting back to 100% and today we had another scare that sent us back to the emergency room. We found that Carly has pneumonia, and the stress of the infection cased an adrenal crisis that left her feeling terrible. She bounced back amazingly well during our day in the emergency room and thankfully she was able to spend the end of her birthday back at home.

She is one amazing little lady, and she sends her love to all of team Carly.

Love, Brad

Catching Up For The Holidays

It has been a long time since my last post, and a lot has happened during this time. I don't know exactly why I haven't written sooner. Partly I think that the frequent issues that Carly has had to deal with have been wearing me down some, and I was starting to feel like a broken record with my posts. That said, this blog is an important way to keep all of our loved ones up to date, and to keep Carly in the minds of so many. We also get a lot from the comments from all of you here and we have missed that. We are going to try a new phase of the blog and I will try to write more and post more photos, but also Christa will begin writing more often with updates on how Carly's weeks are going.

Now on to what people really want to know: How is Carly? I have described the last four months as hovering around mediocre, with some periods that were better and quite a few when it was worse. During the good periods Carly has been able to go to school, she is awake and interactive for most of her time there, and many of her classmates love to get to push her in her wheelchair during their outside time. She is full of smiles, eats well and as always she loves listening to music. We took Carly and Kempton on a 10 day trip to Kauai in October and she had her own bedroom with a big poster bed that had windows looking out to the ocean and beautiful gardens. Each day at sunrise birds would be singing outside her window and she would wake up smiling. That alone was worth the trip. The less good periods have been too frequent and typically Carly stops eating and drinking and she sleeps 20+ hours a day. Each time a shunt issue has been to blame.

Carly is now up to shunt 37, which she got earlier today. She had surgery for shunt 36 just last Friday and after a good day on Saturday she slowly got worse again over the week. Today Dr. Auguste found that something had been blocking the flow that likely got stuck there during the last surgery. She is resting well now and we were treated to a beautiful view of the Marin headlands when we got up to her hospital room today. It was one of the first sunny breaks in a long string of rain, and I am hoping that it is a sign that Carly has some sunny days ahead.

We should get home from the hospital tomorrow and we will get to spend Christmas Eve with Christa's family in Walnut Creek. If Carly is recovering well we hope to fly to Northern Michigan on Christmas day to spend some time with my family. We'll be keeping our fingers crossed that both of these things get to happen. I hope you all have a very Merry Christmas and a Happy New Year.

Love, Brad

Thirty Three

It has been a very long time since my last post, which this time has been a good sign for Carly.  Her most recent shunt lasted 10 weeks, which is a new record for Carly.  During these ten weeks she has done a lot of fun things, including going to her fourth High Sierra Music Festival and a recent trip to visit family and relax at Douglas Lake in Michigan.  The days were not all good for Carly, with some times when we thought a shunt surgery was just around the corner, but she would then pull out of that and follow it up with a few better days.  Consistently so-so is how I had been describing it, but that is a step in the right direction.

Over the last week the less good days were on the rise and we were certain that she would soon need to have a shunt surgery.  That day was today, and she headed into the OR around noon to get shunt # 33.  Dr. Gupta noted that it was clogged, but did not seem as extreme as past revisions.  Her protein levels have dropped a slowly and are now down to 207.  Dr. Gupta wants to see that get into the 100's, and at that point the expectation is that her shunt would be much less likely to clog.  She has her new shunt in place now and she is resting comfortably next to me in her hospital room.  We are hoping that this shunt will set yet another new record, and I will not wait for it to fail to make my next post.

Love, Brad

Pennies For Carly

Carly has been doing pretty well since her last surgery. It continues to take awhile for her to get back to her baseline after surgery, with a lot of trial and error to figure out how much we should be pumping her shunt. While this does make for a mix of good and less good parts of the day, the good parts are still more common. She recently got a new chair that supports her really well and makes it easy for us to take her around the house and involve her in our daily activities. This should be a great addition for us and will hopefully help encourage Carly to spend more and more time awake and interactive.

Recently we received one of the most touching and caring packages in the mail. A friend of ours, Julia, who is a teacher at Donald Hertz School P.S. 83 in the Bronx, NY spread the word about Carly and her fight against brain tumors. A teacher at the school, Connie Calabrese, and her community service club decided to choose Team Carly fundraising for the National Brain Tumor Society as their project. Through a program called Penny Harvest, this group raised $400 to help support the fight against brain tumors. The package they sent included letters and poems from the kids filled with love and support for Carly, as well as a picture of all of them holding a Team Carly sign they made. It was incredibly touching, and such a great example of how inspiring Carly is and how thoughtful and caring people can be. Carly, Christa and I want to thank Julia, Connie, Jesada, Giselle, Maria, Shylia, Vivian, Joshua, Ariella, Bibi, Chris, Jorge, Daniel, Elisaul and Bernadette and all who supported them from the bottom of our hearts. You helped brighten Carly's day, filled her with smiles and will help her to keep getting better each day.

Love, Brad

Thirty Two

Carly was having a lot of up and down moments, with the down moments getting more prevalent over the last week. Time for shunt 31 was clearly up, so Carly headed back to the OR yesterday afternoon.  Dr. Gupta found an obstruction in the peritoneal catheter this time, and he replaced all of the shunt hardware. The elevated protein levels that lead to build up in the shunt have been stable over the last month but still need to come down a bit to ensure the shunt will not become obstructed.  Carly recovered well and we had a nice, quiet room at the hospital last night.  She was discharged around noon today and is now fast asleep in her own bed here at home.  We are hoping that with all new shunt hardware, she has a long stretch of feeling good coming her way.

Love, Brad