Sigh Of Relief

Just after 1pm this afternoon Carly was discharged and we all finally walked out of the hospital doors together. Carly was full of smiles as soon as we got home, and she is resting peacefully in her own bed now. You would think that I wouldn't be surprised by how incredibly strong our little girl is after all she has been through, but still she never ceases to amaze me. She is so special, and we hope that a long stretch of good luck is coming her way.

Love, Brad

Deuce Deuce

Carly headed into the OR for the third time of this admission around 1:30 pm.  Dr. Gupta removed the EVD system and placed a new shunt, number 22. He made a few adjustments to the inlet holes in the catheter hoping that this might help keep it flowing. We are back in our room now and Carly is already eating well and smiling. We are hoping for a quiet night and we should be heading home tomorrow. Now all we can do is hope that it keeps flowing.

Love, Brad

Getting There

Carly's brain washing system continues to work well and she felt pretty good today. Her CSF protein levels are low, but it will be hard to know how long that will last until we stop the infusions and see what happens when her ventricles are left to their own devices. Tomorrow around noon Carly will have surgery to remove the EVD's and replace her old shunt with a new one.  With a new shunt in place we will most likely just have one night left in the hospital before we get to head home.  After eleven nights in the PICU, we are all ready for life on the outside again.

Love, Brad

Making Headway

Carly had a good day today and her custom EVD system is working well. It is holding up to the high flow irrigation, which is allowing the high protein CSF to be washed out. The protein continues to be produced, but the hope is that the steroid infusions will reduce inflammation and in turn bring down the protein levels. The treatment will continue for another day, and Carly is tentatively scheduled to have a shunt revision surgery on Friday afternoon. If we can keep to that schedule we would likely be able to go home on Saturday. We won't get ahead of ourselves and we'll continue take each day one moment at a time, but there is no denying that it will feel great to get home.

Love,  Brad.   

Brainwash

There was a technical difficulty and last night's post was left out:
It was another sleepless night up here on the hill as we dealt with continuing issues with Carly's EVD's. By morning she was feeling more comfortable though, and her day was much better and she continues to feel pretty good now. We spoke with Dr. Gupta early this afternoon and he is also frustrated that things have not gone as smoothly as hoped. We do have a plan for the next steps though, and it is good to have something to put into action.

Because Carly's EVDs clogged so easily, Dr. Gupta wants to try something with a larger inner diameter to help keep the flow going. They don't have any traditional EVD's that are larger so he plans to use either a feeding tube or another type of tube that is unconventional for this type of use. Seeing that Carly is anything but conventional this makes perfect sense. After he places the new EVD, they will infuse with steroids twice a day in an attempt to decrease the ventricular inflammation. This is another uncommon practice, but hopefully it does the trick for our little c. We're feeling the power of Team Carly, thanks!

And here is tonight's post:
Carly went into the OR this morning to replace her EVD's.  The procedure lasted about two hours and it went smoothly. As expected, she now has a very non-conventional setup that includes a feeding tube sutured to an angiocatheter, taped to a tongue depressor. I kid you not! It may look unusual but it is working really well so far. Carly is on a 12 hour cycle where they flush normal saline through the catheters for an hour, inject steroids into her ventricles and clamp the flow for five hours, and then allow it to flow freely for six hours. They will keep this up for the next few days, and hopefully it will bring the protein down and help reduce her ventricular inflammation. We feel like we can see the light at the end of the tunnel for this hospital stay, and maybe a little sleep is just around the bend.

Love, Brad   

Up And Down

Carly's clogged EVD's continue to be difficult to manage. Because they are not flowing freely, each hour the nurses have to force flow and estimate how much CSF to remove. As it is an estimate it is easy to take too much or too little, and over several hours this can add up and leave Carly with internal cranial pressures that are either too high or too low. Earlier today her pressure was too high, and now it may be a bit too low, neither of which feels very good. Fortunately Carly did have several good hours today peppered with smiles and visits from some friends. The plan for the next steps is dependent on some lab results that we should know tomorrow. Thanks for keeping Carly in your thoughts and prayers.

Love, Brad

Plumbing Problems

Today was pretty challenging with Carly's EVD's continuing to have obstruction issues. Neurosurgery had to come by to flush about 8 times in the night, and nearly every hour during the day. Even with the flushing, the EVD's did not function very well so the pressure in Carly's head was continually changing throughout the day was not comfortable for her at times. They have discontinued the irrigation for the night and Carly seems pretty comfortable so hopefully she has a good night's sleep. Neurosurgery will check the protein level in her CSF in the morning, and use that information to help decide what the next steps should be. Thanks for keeping Carly, Christa and I in your thoughts, we can feel the support and it makes a big difference.

Love, Brad

Cloggin' Up

Carly had a more restful night last night, needing some consoling but having some longer stretches when we all got some rest. The biggest challenge today is continuing to deal with clogging issues with her EVD. It shouldn't come as a big surprise, but the protein that has been perpetually clogging her shunts is now clogging her EVD. She is now hooked up to an irrigation system that is pumping fluid into one EVD and draining back out another, in hope that this will help dilute the CSF and clear her ventricles. She is still clogging pretty quickly, but so far the clogs can be cleared with a little intervention every thirty minutes. They plan to keep that up overnight and hopefully it will start to flow more freely on its own.

Love, Brad

Two Quakes and a Faulty Drain

Carly's second night was not as restful as night one. As bedtime approached we could tell that she was feeling irritated, and this continued through the night. It is something we have seen before, Carly rocks her head and moves her hand around a lot and to keep her from crying you need to hold her hand and pat her side. We had to keep this up constantly through the night and in the end we all got about an hour of sleep total.

Carly was more comfortable early today, but in the late afternoon she started to get agitated again. Around five this evening CSF started to leak out of the incision near the EVD, something that isn't supposed to happen. The neurosurgery resident came by and was able to get CSF to flow through the EVD again, but it seems like it might have a partial clog. We are keeping our eye on it overnight, and hopefully it was a one time incident. Carly is still needing tending now to be comfortable, but hopefully she can get more comfortable soon so we can all get some rest.

Love, Brad

One Down

Carly had an uneventful day, which is exactly what you want when you are in the PICU.  She slept well last night and today she shared some smiles, ate well, and rested. Today they just wanted to let the EVD drain for some time and tomorrow they will send off some of the CSF for additional tests.  We are hoping that another uneventful day lies ahead.

Love, Brad

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