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
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
4 comments:
Wow! Modern day medicine is a miracle. Carly's custom made drainage system sounds like it was just what she needed. Carly...She's phenomenal. So you are you two. And those doctors...I applaud them.
Thanks for the good news. Let's keep it, ahem, flowing.
Sweet Carly is such an amazing little girl. And you guys are the most devoted parents. I hope that Carly feels better today. Sending love and prayers.
As a little Boilermaker, of course Carly needs a Rube Goldberg-esque EVD! A little outside the box engineering is going to do the trick.
We love you guys!
I'm feeling that unconventional is just what Carly needs! Hoping for a quick departure from the hospital and some good sleep for all!
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