Wednesday, March 23, 2011

Breath of Fresh Air

Carly was discharged late yesterday afternoon and we are all back at home. It is amazing how much better she is after such a short time, she never ceases to amaze me. She is still congested and will take some time to get back to herself, but she is heading in the right direction.

Love, Brad

Sunday, March 20, 2011

Midnight Run

We have another medical adventure to add to the record books. Christa, Carly and I headed up to Tahoe for the weekend as we typically do during the winter. With more big snow storms on the way we were ready for some powder therapy in the mountains. On Friday night Carly had a cough that kept her, and us, up all night. In the morning the cough subsided and she looked better so we headed to Alpine Meadows to meet our babysitter and hit the slopes. The snow was knee to thigh deep and we had a great morning, but when we came in at lunch Carly did not look good and seemed to be having an adrenal crisis (low cortisol.) We gave her a cortisol shot and she started to look better but her breathing was still very labored so we took her to the ER in Truckee for an exam. They didn't like how she looked either and they wanted her to be seen by pediatric specialists at the children's hospital in Reno. Christa and Carly were loaded into an ambulance and with lights and sirens blazing they were rushed down to Reno while I followed in our car. The team in Reno placed a central IV (which was tricky) and took blood labs. The early lab results did not show an obvious cause for the labored breathing, and they felt that Carly would be best cared for at UCSF where she is well-known.

By 10:30pm Christa and Carly were being loaded into another ambulance and taken to the Reno airport where a small, four seat airplane was waiting to transport them to San Francisco. The plane was tiny and Christa had to sit in the co-pilot seat while the nurses tended to Carly in the back. There was a massive storm system in the area and they had a harrowing one hour flight through 100 mph winds and snow to San Francisco airport where a final ambulance waited to take them to UCSF. During this time I made the 4.5 hour drive (through snow and heavy rain) from Reno back to San Francisco, finally arriving at the hospital around 3:30am. There was a lot of activity around Carly most of the early morning, and things finally settled down around 8am.

It looks like Carly has a lung infection that is most likely viral. After some respiratory therapy and coughing her breathing has improved considerably today and she is smiling and eating well. The virus will likely take several days to pass and she will need to stay in the hospital until the doctors are comfortable sending her home, but after the progress we have seen today that could happen pretty quickly. It was a crazy day and we are short on sleep, but seeing Carly smile makes us feel much better already.

Thursday, March 3, 2011

Back Home Again

Our stay in intensive care was short and Carly was discharged around noon today.  She is doing well, is very hungry, and is already full of smiles again. She is a little wonder and lights up our home.

Love, Brad


Carly's surgery went fine, with a few unexpected surprises. Dr. Auguste did not find a clog in this shunt. He still replaced the ventricular catheter to the material that may help if she is having an allergic reaction. The high protein could be the cause of the symptoms that looked like a clogged shunt, and hopefully the new shunt hardware helps in lowering this. At the end of the procedure they could hear a lot of congestion in Carly's airway so they left her on the breathing machine and sent her to the PICU for recovery. A chest X-ray did not show any signs of a major lung infection so she was extubated a few hours ago and is resting pretty comfortably now. We are hoping that she can get some much deserved rest.

Love, Brad

Wednesday, March 2, 2011


Over the last few weeks Carly has shown some signs of a malfunctioning shunt, which we were concerned about happening because of the elevated protein levels in her CSF. She is still having good moments full of smiles, but it is clear that she needs to get the shunt fixed. She will have surgery today at 3pm, and they will try a new shunt material to see if an allergy could be behind the elevated protein (and all of the clogged shunts.) Please keep her in your thoughts.

Love, Brad