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