“If you can heal the symptoms but not effect the cause,
it’s quite a bit like trying to heal a gunshot wound with gauze.”
These lyrics from Phish’s song Sand have been running through my head for the last three weeks. While Carly has undergone countless diagnostics tests they have attempted to treat her pain symptoms with medications, but the cause remained a mystery. The medications gave temporary relief along the way, but the pain always crept back. On top of that, the medications have their own side effects which seem to make Carly uncomfortable making it even more difficult to figure out what the root cause really is.
It looks like we are finally zeroing in on a cause. This all started over three weeks ago when Carly started to have intermittent stomach pains at home. It escalated to the point of her going into shock the day we brought her to the emergency room. The gastritis that GI found could easily explain the sharp abdominal pain that Carly was experiencing and the results from this morning’s MRI give more of the story. They found that there is a lot more fluid collected between Carly’s skull and brain which is leading to excessive cranial pressure. While she was able manage her CSF without a shunt under normal circumstances, it looks like she is not able to keep up when under extreme pain which naturally increases the pressure it her head.
To relieve the pressure in her head, and help her in the long term, she went into the operating room once again around 5:30 pm today to have her shunt reconnected. The procedure took three hours, a little longer than expected, and in the words of Dr. Auguste, “Carly made them bring their A game once again.” They had to replace all of the shunt hardware including the catheter that runs from the shunt valve into the right atrium of her heart, but they are very happy with the result and said that Carly was strong through the entire procedure. She will be closely monitored over the next several days but we expect that this will finally give her the relief that she deserves. Thanks for continuing to lift her up with all of your love and prayers.
Love, Brad
8 comments:
Hoping for Sweeter, if not Sweet dreams for the 3 of you tonight.
TOUGHNESS,PERSEVERANCE, PATIENCE, RESILIENCE,DETERMINED HOPEFULNESS are only some ways to describe what we see in you throughout this journey. And Carly is definitely her parent's own child, a fighter.
I read your words every day, hoping that something will come to light. The road is still long, but it must feel so good to be going in the right direction and you can get anywhere with all the love you have wrapped around you.
Sleep well tonight, all of you.
Love,
Susan
Love, Love, Love......I am following your posts and am with you! Since your last post spoke of Phish.....I always said to Christa, "It is always the best times when I see you guys".....I hope this is true for when I come to Sf in August. Reconnecting with you all is a top priority! I can't wait to meet Carly--what an amazing little girl!
So glad you have some answers and a treatment plan. I feel the light at the end of the tunnel getting closer where you are all back at home and Carly is pain free. Love you all.
Sounds like yesterday was a good day. I'm glad to hear some of the pieces of the puzzle are coming together... but especially glad to hear that Carly is getting some relief. Hopefully everything keeps moving in a positive direction!
Love,
Kevin
so glad they are figuring it all out. all i wish for is for you to finally go home and be back where you belong with your healing healthy little baby. sending you so much love! xo
You guys are just incredible parents, obviously focused on what's important in the moment. We are praying for things to get easier for you three and for a pain-free, healthy Carly very soon. sounds like you're on the right path.
sending you a ton of east coast love,
sheila and keith
Wow. Good to hear they're finally zeroing in on the cause but am sorry to hear Carly had to undergo another surgery. That being said, I'm visualing the success of the surgery and a time (soon) when you will all get to go back HOME to rest. ((HUGS))
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