Shunt Revision #1

We arrived at the RMH on Tuesday. I had been corresponding by email with another mom who has twins. Not just 1 set, but 2! :) Cindy and Riley and I had been emailing for a while re: chiari. Riley had her decompression surgery on Valentine's Day. I have to say that I do not know how many times I told Cindy how awesome Riley looked. Gabe never looked that good that soon after surgery. We actually have another friend, Kaci, in common. Kaci is a chiari/cranio mom.

Through Cindy I met Kristen and Nicholas. (Which after I get permission I will link her blog) Kristen used Angel Flights to fly in from OK. I will admit that I was in stitches when she was letting me about her flight. Something along the lines of, "Well, I could feel the air coming through the plane on my arm". BRAVE BRAVE BRAVE woman. Nicholas was diagnosed with Chiari 5 years ago and he did not have surgery. His symptoms are getting progressively worse. Nicholas was having a MRI on Wednesday.

We all sat together and had dinner, which was yummy and sponsored by Southwest Airlines. (Thank you southwest) We were talking about the things that Chiari parents talk about. Our friend, Beth (Gabby's mom-carepages: FAILUREISNOTANOPTION ) came over and we were talking about Gaby. I felt guilty as we had to keep saying to Cindy and Kristen, "Our kids are not the norm. They are complicated cases".

Gabe and Riley played so well together. I wish that I had my camera with me when they were playing. Nicholas is such a sweet well behaved young man. Kristen if you are reading this, Nicholas is awesome.

Gabe had a LOT of anxiety Tuesday night. He paced the 33,000sqft house a lot.

As you can tell, he was not too happy before bedtime.

Gabe was very kind Wednesday morning and told me that I could have breakfast before we went to the hospital, that we would play in the playroom. :) Thank Goodness he did. We took the shuttle to the hospital and got there early. We went to check on Kristen as she was waiting for Nicholas to get out of his MRI. By the time we got there she looked very worried and I wanted to give her a big hug. His MRI was taking longer than they anticipated which of course makes moms worry more. Kristen got called back right when we needed to head to surgery waiting.

We arrived at surgery waiting (early of course) and filled out our paperwork. And we waited...and waited...and waited.... Surgeries on the kids before us were taking longer than anticipated and that does not bode well for us. Call us superstitious, but still we like the cases before us to go smoothly. Then we had to wait for anesthesia. We were not taken back until 1:30pm. We did get to see our favorite med student, Kim, who wrote an article/did a study on Gabe.

Post op in his room. NOT a happy man. Eyes are swollen, face is swollen, chest is hurting and DAMMIT where is my dinner.

Gabe 22 hours post op. Waiting for last dose of antibiotics and for Amanda to come back from clinic to discharge us.

Surgical incision. To replace the portion of the shunt they did, they have to make an incision at the top of his side and one at his tummy level. (He already had these from shunt placement) However, they pull 10cm for tubing out of his tummy and pull the shunt hardware up through the top incision. They then remove what they need to and the PULL the hardware back down into his body from the tubing at the bottom of the incision. They then push the 10cm of tubing back into his tummy and VOILA they are done. However, while the surgery sounds simple, and it is, they have to dissect muscle and scar tissue to pull this hardware out so you are tender on your belly and side.

This is the component part that they removed. It is 1.75 inches from tip to tip.

Close Up.