Monday, July 27, 2009

No News IS Good News

I just realized that it has been over a week since my last Carly update. I can't believe an entire week has already gone by, but I am so happy that it has passed so easily. Carly has been doing really well and continues on her slow but steady path of recovery. Last Monday she had a head CT scan to see how her ventricles looked since her shunt was reconnected and things looked good. Her ventricles are smaller which means that the shunt continues to help alleviate the pressure in her head. There is still a lot of fluid between her brain and skull, but this will be there until her brain grows to fill the space that was once taken up by her tumor. She has been sleeping really well which has helped us to make up for lost time, something we will take as long as we can get it. She has also been smiling more and her awake periods are getting longer and more frequent. All in all, it was a good week.

Love, Brad

Sunday, July 19, 2009

A Song I Heard The Ocean Sing

We were looking to spend some time in nature so we took Carly on her first ever camping trip this past weekend. We headed north and found a perfect spot to pitch our tent literally on the edge of a cliff overlooking the Pacific. Christa and I have always done a lot of camping and it felt great to breathe the fresh ocean air but I think Carly may have liked it the most. As soon as the tent was set up we took her inside and the first thing she did was smile. She seemed at peace for the entire weekend, sleeping great and crying less than she has in weeks. She also did a good job holding up her head and even sat up on her own on Christa's lap for a few moments as we watched the sun set on Friday night. On Saturday the wind really picked up, sending our neighbors into their van for a good part of the day, but we were happy to sit there in our chairs at the end of the continent letting the wind power blow away the residual stress from the month in the PICU. We are already counting the days until our next camping trip together.

Love, Brad

Tuesday, July 14, 2009

Break On Through

The last few days have been hit and miss for Carly. The molars that started coming through last week continue to make their way in and now all four corners of her mouth are showing the signs of some teeth. Two out of the last three nights Carly has been very uncomfortable, crying all night and sleeping around 3 hours or so, but we keep reminding ourselves how much better this is than sleepless nights in the PICU. It is a bit more complicated since Carly has other issues that could be bothering her, but we are pretty certain that it is only teeth this time around. Because she hasn't learned to pick things up or to put things in her mouth yet she has less coping mechanisms than a typical kid, but eventually all her teeth will be in. Until then we can power through the day with a little extra caffeine.

Carly has definitely shown improvement over last month. Her neck is getting pretty strong and she can hold her head up for minutes on end now. She is also looking around a lot more than she has since the tumor surgery in April. Her right eye seems to be stronger than her left now and today her ophthalmologist told us we could stop patching her eye for now. In the last few days Carly has starting making some talking sounds, mostly "ahh", something that she hasn't done much of since October. We'll take all of the progress we can get.

Love, Brad

Wednesday, July 8, 2009

Back On The Train

Carly has had mostly good days this week which is just what we are looking for. Her stomach seems to bother her occasionally and three new teeth have broken through the skin over the last few days which has kept things interesting. Her nights have been pretty amazing as she has slept for seven straight hours or more for four consecutive nights now. I don't think we have ever experienced that and it has helped us all catch up on some much needed sleep. Even when she does wake up in the morning she seems completely content to just look around the room from the comfort of her bed which is what we usually find her doing each morning.

Carly had an impromptu checkup with neurosurgery yesterday to evaluate her shunt setting. The shunt has a magnetic valve in it that allows for adjustment of the flow rate by holding a magnet up to her skin and turning the resistance up or down. Her fontanel is very sunken now which means that the excess fluid is being drained very easily so the shunt resistance was turned up one level to try and get a bit closer to a natural drainage/absorption setting. They were very encouraged by how good she looked and happy to hear how well she is doing with the taper from her medications. She should be able to get back to her physical therapy soon and hopefully she can make up for some lost time pretty quickly.

Love, Brad

Saturday, July 4, 2009

Relaxation Station

Carly, Christa and I wish you all a happy 4th of July. We usually spend this weekend dancing away the day (and night) at the High Sierra Music Festival, but Carly can celebrate her second festival in 2010. Carly is doing well, sleeping much better than she has in a long time and getting stronger by the day. Two of her molars have decided to break through in the last two days, and the other two look close behind. They have her crying more than we would like, but regular baby issues are much easier to deal with. It is a bit of a surprise since she only has her two middle bottom teeth at this point, but when did Carly ever do anything on a typical schedule?

We all needed some rest, relaxation and rejuvenation after the last month so we are spending the weekend at the Cavallo Point Lodge in Sausalito. It is close enough to home and UCSF that we were comfortable coming here only days after getting out of the hospital, yet it feels so far from our time in the PICU. This photo was taken from our balcony, and we are all soaking in the view and the fresh air.

Love, Brad

Thursday, July 2, 2009


Life on the outside beats the hospital any day. Carly was a little restless in the night, but she loved getting to spend the majority of her day strolling around San Francisco. She alternated between dozing and soaking in the warm sun and fresh air and seemed to love every minute of it. Her final walk through Cole Valley ended with a nice long nap with a few of her favorite stuffed friends. Now that is how a little girl should get to spend her day.

Love, Brad

Wednesday, July 1, 2009

Way Back Home

We're out! What better way to usher in July than to be discharged. Carly had another good night, her best in a month, and we were sent home to allow Carly to get back on her healing path. There are a few medications that she still needs to taper off, but we will be able to manage that on our own over the next week or so. Little C seems happy to be back in her house, and after nearly a month away Christa and I were relieved to finally step through our front door again.

Since this journey began in September 2008, I have known that Carly was both a little miracle and a tough fighter. Never has she had to show that more than on this trip. The medical staff at UCSF are amazing, but Carly still managed to keep everyone guessing for so many weeks. The complete story will never be known for sure, but the version we are sticking with is this: Carly had a virus or some other type of stomach issue that caused severe abdominal pain. As the pain worsened, her body was not able to mount an appropriate adrenal response because she does not have her pituitary glad. She went into adrenal shock, despite the stress dose of hydrocortisone that we injected into her leg, and we had to rush her to the emergency room. After she was stabilized they did scans of her head and even used an external ventricular drain to make sure she didn't have excessive intracranial pressure. At that time her cranial pressure was fine so the search moved on from her head. During the next few weeks she continued to have intense pain and with each multiple hour crying episode the pressure in her head was pushed beyond the limit that she could manage on her own. The original source of her pain then ran its course, but she was left with increased cranial pressure that was only relieved when her shunt was reconnected. In the future we should be able to avoid a repeat of this because the shunt will prevent the pressure in her head from ever getting to a critical level.

Carly, Christa and I want to thank everyone for the love and support that has helped us get this far. She has a lot of healing to do, but she is a remarkable little girl and she will continue to heal and teach us something new each day.

Love, Brad