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Thursday, January 5, 2012

Thursday Night Update

As Greg mentioned below when he posted pictures earlier, todays visit to the OR went well.

First, nothing was found in his stomach. Whatever was there must have passed through his system. Adios, "thing".

Next, I made a mistake in saying that he was getting an JG button. He simply has a G button, as in Gasto. Feeds will now go straight to his stomach instead of bypassing the stomach and going to the intestines. I don't know how I missed that.

So, PD gone. Adios.
Goodbye tape and tubes on the face.
Hello chubby cheeks and hello G Button.

In addition to the G button there were two other small issues that were taken care of in the OR. Since Oakes has had reflux issues, and we are now feeding the stomach they preformed a Nisson fundoplication on him. This is where the top of the stomach is wrapped around the bottom of the esophagus and stitched in place. This should greatly help to prevent reflux. In most of us, reflux is uncomfortable but not a huge health threat, but if Oakes were to repeatedly get stomach acid in his fragile lungs or airways it could be a significant problem. After the Nisson was completed a quick glance at the bottom of the stomach showed that Oakes'pyloric sphincter, the muscle that allows digested food to pass from the stomach to the small intestines was a little abnormal, it was a little too thick and this could have been contributing to his reflux issue. A Pyloromyotomy was performed which corrected the issue. Dr. Tarr, who performed the surgery today said this issue is very common in lung transplant patients.

So three hours in the OR and Oakes is looking good. He is not feeling so great right now, but in a few days I hope to see huge smiles sandwiched between chubby, rosy cheeks.

During those 3 hours I had several really good conversations with some of our favorite doctors. Dr. Lee came by to check on Oakes and I. Dr Eghtesady came to check on us, Dr. Michelson, Dr. Murphy, and at the end of the day, Dee Dee, Dr. Eghtesady's research nurse and single person in charge of pushing Oakes' stents along. She gave me a very different update from what I had gotten earlier in the week. She said that the stents have not been approved by the FDA, but she thinks that we will get the approval next week. She left me with an 8 page consent form that we needed to sign and get back to her so that the final paperwork could be submitted. Once the FDA gives her the go ahead the order will be placed and the stents will begin to be fabricated. She confirmed 2-3 weeks to get them once they are ordered and she didn't think that we would need to launch a stent recovery mission to get them. Anyway, sounds like we moving in the right direction and should not be too far off of those February /March time frames. The other interesting piece of info that I gathered from Dr. Eghtesady was that he now thinks that Oakes may only need the stent on his right side, and not the left, which is exciting.

Thank you for all of the prayers and sweet words today!
Love and heartstrings to all of our amazing friends and supporters!
More chubby cheek pictures to come soon, XO

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