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