Drain

Carly's surgery went smoothly today and she is now resting in the PICU.  It took just under 3 hours for the entire procedure, with the biopsy taking the most time.  Because of the protein and debris in Carly's CSF it wasn't easy for Dr. Gupta to look around with the scope, so he had to spend some time irrigating with saline. Nothing stood out in the initial results, and there was no obvious sign of tumor which is great news.

We will now spend the week in the PICU with the external drain in place.  They are going to monitor the protein levels and CSF production, and run a few tests each day to see if that can shed some light on the perpetual shunt clogging issues. The drain is a bit cumbersome because anytime we want to move Carly we must first close it, then move Carly, then realign the collection bag with the center of Carly's head using a laser pointer, then open the drain back up again.  It takes 2-3 people to make this happen, but she is a trooper and is more than happy to deal with that to get snuggled.

Love, Brad

A New Approach

On Friday Carly was still not feeling great, so neurosurgery adjusted the shunt again and also tapped it to remove CSF to hopefully help relieve some pressure on Carly's brain.  These two things helped and Carly did well over the weekend and we all had a few good nights sleep, but we could also tell that she was not feeling like herself. Today it seems like she is heading downhill a bit, so tomorrow we are going for a different approach and will try something we have been discussing with Dr. Gupta for the last few months.

To investigate the cause of the high CSF protein and ventricular inflamation that has been plaguing Carly for so long, Dr. Gupta is going to do a small biopsy of the ventricular wall and place an external ventricular drain (EVD) tomorrow around noon.  He is hoping that the biopsy might provide some indication to the cause of the issue and help direct a new treatment option. The EVD allows them to closely monitor Carly's spinal fluid and provides access to flush the area and hopefully allow it to clear up and heal. While the EVD is in place Carly will have to be in the intensive care unit and it will be challenging to move her around, but hopefully it will help break this cycle she is stuck in.  We expect that she could be in the PICU for a week, or possibly a bit longer, but we won't really know until the biopsy results are in.  Please keep Carly in your thoughts and prayers and we all hope this will be a short and productive stay in the hospital.

Love, Brad

Let It Flow

Carly was discharged early Monday afternoon and she was clearly happy to be home.  Unfortunately over the last few days she has started to feel worse, leaving us wondering if it could be the shunt malfunctioning already or if it is something else with very similar symptoms.  By this afternoon all of the typical high pressure symptoms came back in force, so we needed to do something about it.  Christa took Carly up to see neurosurgery to have the shunt adjusted to flow more easily. As they checked the setting they found that it was between settings which could have caused some issues, so it was changed to the setting we initially requested.  The hope is that this will relieve Carly's high pressure symptoms, but we can always lower the setting tomorrow if it doesn't do the trick.  So far this evening she is not really doing better, so it is looking like we will need to adjust the shunt tomorrow and hope that helps. Keep thinking the good shunt thoughts, I know we are!

Love, Brad

Blackjack

Carly's shunt was clearly on the way out near the end of the week, so she had a scheduled surgery set for this Tuesday. To help her make it through the weekend Neurosurgery tapped the shunt and took off 40 ml of fluid to help relieve the pressure. This made Carly feel a lot better, but the effects only lasted about 24 hours. She had a tough night last night and this morning it was clear that the shunt would wait no longer. Dr. Gupta brought her into the OR at 2pm and replaced all of the shunt hardware yet again. The surgery went smoothly, and Carly has had a great recovery so far. We have a quiet room to ourselves and she is eating now as we listen to some of our favorite music. We are hoping that we can all get some rest here tonight, if all goes well we will be heading home tomorrow. Hopefully 21 is Carly's lucky number. Love, Brad

A Mixed Month

The last few weeks have been a mixed bag for Carly.  After her shunt surgery she had an unsettled period as she recovered, but soon that led to some good days.  She was due for an MRI checkup to monitor her tumor, but as that day approached she had a respiratory issue that made the anesthesia team want to wait a few weeks for it to clear up.  As a precaution we asked for a chest X-ray to make sure everything looked ok, and sure enough Carly had another round of pneumonia.  It looked pretty serious on the film and they wanted Carly to stay overnight in the hospital, but with Christa's urging they were convinced to let us go home to observe her there while she started a long course of antibiotics.  After a few days she was doing much better, and our pediatrician thanked Christa for standing her ground, as that turned out to be the best thing for Carly.

Later in the month my parents came out to San Francisco for a visit and we all stayed at a beautiful house in Sausalito for a week.   Part way through the week Carly had one of the best days we have seen in months. She was all smiles, babbling, and interacting with anyone that would play with her which was great to see. As the week went on she began to become more restless during the night, and our sleep was interrupted a few times each night.  This has continued for most of the last week, and it is beginning to look like Carly's shunt may be having some problems.  We will see how she does this week, and neurosurgery will tap the shunt tomorrow to evaluate the protein level in her CSF and see if the tap makes her feel a bit better.

The best news recently came late last week.  Carly's MRI finally happened on Thursday and on Friday we got the results.  The tumor has shrunk to almost half its size since the last scan, so it is looking like the gamma knife treatment is working.  It can take up to a year for the full effect of gamma knife to occur and Carly's doctors are encouraged that the tumor is responding this well early on.  We're keeping focused on this great news, and the good days that Carly has had, and hoping that these good days will become more and more frequent in the coming weeks.

Love,

Brad

Recoup

Carly's recovery started a bit slow, but she was feeling well enough to be discharged just before noon today.  It was a big help that all of the staff at UCSF knows us well and we live close to the hospital, otherwise they may have wanted to observe her a bit longer.  When Carly got home she was already back to smiling and she had a good afternoon.  She is now sleeping peacefully in her own bed, and hopefully having some sweet dreams.  The love from Team Carly is a big help for us all, as always.

Love,

Brad

Twenty

Carly went in for surgery at noon today, and they finished up just after two. Everything went smoothly, and Dr. Gupta found clogs in both of the catheters so he replaced all of the shunt hardware. The high protein in her CSF is still the culprit, as it has been for most of the shunts, but it has come down a bit over the last few months and we are hoping that trend continues. Carly is feeling sore, but she did just finish a bottle and is resting now. She has a lot of neighbors separated only by curtains, so hopefully everyone is feeling good through the night. We expect to be heading home sometime tomorrow morning.  Love,  Brad

Deja vu

Carly's symptoms didn't improve, and she hasn't really felt good for almost three weeks now.  For awhile it did not seem like a shunt issue, but as we headed into the weekend we were fairly certain that the shunt was to blame.  With it being a holiday weekend, both Dr. Gupta and Dr. Auguste were out of town so we were hoping to make it to Tuesday without Carly needing surgery.  On Saturday Carly was feeling terrible, so we went to the emergency room and the neurosurgery resident tapped the shunt and took off some fluid to relieve the pressure.  Within an hour Carly was felling a lot better, it was like night and day.  It was a big relief to see her feeling better, and to know that the shunt was at least a part of the problem.

While we were happy to see her feeling better, we also knew that taps only provide temporary relief so we here hoping that she would make it Tuesday or Wednesday.  Thankfully, she made it through the rest of the weekend without getting too bad, and she is now scheduled to head to the OR tomorrow around 11am to get shunt #20. We'll be visualizing another successful surgery, and hoping that this shunt wil last longer then the rest.  Thanks for keeping her in your thoughts.

Love, Brad