One Of These Days

We knew Carly's shunt was on borrowed time, and she has let us know that it is time for a change.  She will have surgery tomorrow around 2pm to bring on shunt number seventeen. It is frustrating that her shunts aren't lasting more than a few weeks, but the extremely high protein in her CSF continues to cause problems.  Dr. Gupta plans to use a new type of shunt valve that is designed for high protein cases, and we're hoping that it will give Carly some more time between surgeries.

Love, Brad

Naptime

Carly bounced back quickly and after a day in the PICU we were sent home yesterday afternoon.  We all were obviously tired because we fell asleep in our living room less than an hour after getting home, and we managed to eat some dinner before heading off to bed.  Carly had a good day today and is eating well and sharing some cute smiles with us. We'll be keeping a close eye on her over the weekend, and the neurosurgery team is ready for a shunt replacement whenever Carly tells us it's time.

Love, Brad

Good Morning

Carly continued to be really sleepy until around 3am today, when she started to take a quick turn for the better. Since then she has continued to improve, smiling a lot and entertaining her nurse with some giggles.  She is eating now and looking more like herself and is only getting a little supplemental oxygen.  Over the next few hours we will ween her off of the oxygen, and if she tolerates that well she will be sent home.

Love, Brad

Well, Almost Finished

Carly hasn't woken up from her anesthesia as quickly as usual so we will need to spend the night in the PICU for observation. They have said that any effects from the Gamma Knife wouldn't be noticeable this early, so it is likely related to being under anesthesia for longer than usual, or related to the shunt function in some way. We'll be ready and waiting with a bottle of apple juice as soon as she is ready to drink.

Love, Brad

Finished

The procedure is over and Carly is resting peacefully in recovery. Everything went smoothly, and as long as she rouses well we will be heading home later tonight. The effects of radiation treatment often take months to become clear so it will be awhile before we know the full outcome, but we are expecting the best.

There is a fourth step waiting for Carly, she will need a shunt revision soon. Shunt 16 has been showing signs of a clog for awhile now, and we were hoping it would at least hold out until today's procedure. They removed some CSF through the shunt valve on Monday which provided a few days releif and they tapped it again after the procedure today hoping that will give her at least a few days rest after the gamma knife procedure. Thanks to everyone for holding Carly close to you today, it helps all of us.

Love, Brad

Step Three

We just met with Dr. Sneed and the radiation plan is in place. The tumor has grown since the last MRI, but is still a good size for this type of treatment. The treatment will last 75 minutes after they get Carly positioned and they believe the plotted treatment area will take care of all of the visible tumor. The tumor is close to part of her optic pathway, so all of our energy is focused on keeping that area safe while the tumor goes away. Thanks for the love and support that we are feeling all day.

Love, Brad

Step Two

We just got an update that everything is going well. The MRI is finished and Dr. Sneed (radiation oncology) and Dr. Gupta are planning the treatment now. This could take a few hours, and they will review the plan with us before starting the treatment.

Love, Brad

Step One

We just handed Carly off to the team that will be taking care of her today. She is under anesthesia now and Dr. Gupta will be placing a halo frame on her head soon. Once that is in place she will get an MRI to image the tumor. They will use these images to plan where the radiation will target, and the frame will allow them to precisely align her in the Gamma Knife machine. After they have a plan they will call us over to discuss. This should be in about three hours or so. Thanks for keeeping her in your thoughts.

Love, Brad