Carly had an ultrasound today to see if her belly started absorbing the CSF after her tap last week. Her stomach was looking a little bit distended so we were concerned that the fluid was re-accumulating, and the ultrasound proved that to be right. They are still unsure why this is happening but they think that either she is allergic to the coating on the shunt tubing, or her peritoneal space (the area around her stomach) just doesn't have enough surface area to keep up with the amount of fluid that her head is producing.
The next step is to try another round of tapping her belly followed by a course of steroids to try and reduce any inflammation that could be inhibiting her ability to absorb the fluid. She will have the tap on Thursday and another ultrasound early next week to see if this works. If the fluid returns, the next step would be to admit her to the hospital and have the shunt drain externally for a week or so to give her belly a rest. They would then replace the shunt with one made with a material that is less likely to cause an allergic reaction (which is very rare in the first place.) We are really hoping that one of these steps solves the problem as the next option has a lot of new potential complications and would require revision surgeries every few months. Through all of this Carly is still doing remarkably well and she looks as cute as a button now playing with her toys as she rocks out to some music. All three of us send our love and thanks to all of you.
Love, Brad
10 comments:
She is such an incredible little girl. My thoughts and love are with you.
i am keeping all three of you in thoughts. i hope they find the right fix this time around. carly's strength continues to amaze. i always knew both of you were strong so i guess carly's strength shouldn't surprise me.
love ya - shuman
Sending Carly lots of love and healing thoughts every day, all the time.
Carly's strength is incredible, and you are both amazing, loving people. We are with you every step of the way even though we're across the country.
As always, all our support through all of this... You really deserve to get to the point where you can settle down and rest... All our love to the three of you, Cécile Cornillon
Thanks for the update Brad! I'll be right there with you hoping that a solution is found in one of these next steps! Hugs and kisses to sweet carly.
I hope that the solution to this problem arrives quickly and will be as easy as possible. I am happy to hear that little Carly is being such a trooper! Thinking about you, Christa & Carly every day & sending love and healing thoughts to you.
***~~~positive vibes heading your way everyday~~~***
love you guys,
sarah & matt
I was referred to the site by one of your friends. As I read it I started to well up due to the strength you all demonstrating amidst these very difficult times. It never ceases to amaze me how powerful love can be. A stranger enters our lives and our lives are changed for ever. Seeing the purity of the child and the power of hope is an inspiration to all of us. Peace.
yes, you all really are proof of how powerful love can be. We are thinking about you three always and sending lots of love and prayers your way. SO impressed that she's rockin out through all of this, but not surprised. You are both showing her what it means to be strong and it seems she's learning well. Hoping this problem gets solved as easily and as quickly as possible for her.
LOVELOVELOVE TO YOUR FAMILY!,
Sheila, Keith, & Dylan
Carly is incredible and gives us all strength. You are in our prayers.
Judi Heydon (Brian Horn's mom)
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