Wednesday, March 21, 2012

Road Trip

Carly’s recovery from her last shunt surgery has been going well, so we hit the road early last week for our road trip along the Gulf of Mexico. Carly did great for the five hour flight to Miami and Kemp did really well too. After a few days at Miami Beach we headed south to the keys and then up the gulf coast to near Sarasota, FL on Longboat Key. We are visiting my parents and overlapped with my brother and his family for one day so Carly and Kemp were able to spend time with their Milwaukee cousins. Carly had her first taste of key lime pie which was a big hit, and she seems really relaxed when she is lounging on a beach chair under an umbrella looking out over the Gulf. Overall she has had many good moments, mixed with some where she is not feeling as great. Over the last day or two she has been more sleepy and not feeling her best. Her seizures have not dissipated and it is hard to know if that is shunt related or if we need to increase her dose of seizure medication. We are hoping that the seizures will stabilize on their own over the next week and that Carly will be feeling better and better as we make our way toward Santa Fe, NM (our final destination before flying home.) It is great getting to spend this much time together as a family, and I’ll be sure to start posting pictures of the day if you’d like to see what Carly is up to. Some more pictures from the trip are posted here: Road Trip Photo Album



Friday, March 9, 2012

Twenty Nine

Carly had been giving us signs that her shunt was not working quite right, and it became clear that she was in need of a revision. Today at 3pm we headed up to UCSF and just before five she headed into the OR. From her symptoms over the last few weeks we expected that the catheter going from the valve to her belly was partially obstructed and that is what Dr. Gupta found during the surgery. He replaced that catheter as well as the valve and she was out of the OR around 6:30. Dr. Gupta commented on how much better the CSF looks, being much more clear than it has been in a very long time. A tap earlier in the week showed that the protein has dropped to near 300, which is why it is finally starting to look more typical. At this protein level Carly is getting close to the point when the shunts should be able to work as designed, and hopefully obstructions will soon be a thing of the past. Carly was a bit uncomfortable just after surgery but she is doing better now and is resting peacefully. We should be discharged tomorrow morning, and will hopefully still be starting our road trip early next week. Thanks for sending love our way, it is always a big help for all of us.

Love, Brad

Sunday, March 4, 2012

Catching Up

We have hit a great milestone today, with it being exactly 4 weeks since Carly got shunt #28. Given the one to two weeks between revisions pattern that she had been in, getting to 4 weeks is a great turn in the right direction. For the first few weeks since the revision Carly was doing really well, with a three day run that was the best we have seen in many months. Over the last two weeks she has had more ups and downs with an increase in seizures and periods in the day where she is clearly not feeling well. It is difficult to know if this is a sign of the shunt starting to malfunction, or if it is in any way related to the amount of times that we pump the shunt each day to force some flow through it. We continually try to monitor how Carly looks and adjust the amount and frequency of the pumping. If she doesn’t show any big improvements this week we will probably have neurosurgery tap the shunt to help us figure things out.

If Carly is doing well we plan to take her, and Kempton, on a road trip starting in Miami and traveling along the gulf coast. When Carly was born we took her on a welcome tour of the southwest United States so it felt fitting to have a welcome tour for Kempton in the southeast. We have flights booked for Tuesday the 13th, and we are hoping that we feel comfortable enough with the shunt situation to travel that far from home. We will keep you posted and will send updates and photos from the road when the road trip gets underway.

The other great news is that Carly’s most recent MRI did not show any signs of tumor. The recurrent tumor that was treated with gamma knife radiation in June is now undetectable. Carly will continue to have an MRI every three months for monitoring, but things are looking great now. Thanks for the love and support as Carly moves forward on her road to recovery.

Love, Brad