Alex and Maddy

Alex and Maddy

Monday, May 22, 2017

Surgery Update

I will keep this short as I am really tired. It has been a long day.

I'll start with the positives: Alex's new port went in with absolutely no problems and is working beautifully. The PICC line was pulled and Alex is so happy to have his left arm back to normal! The Echo looked good. They saw no signs of endocarditis (infection in the lining of the heart).  They want to review everything one more time, but we are really close to stopping our IV anti-fungal treatment.

The GI stuff was not quite as positive. His colon is HUGE. Dr. O said it over and over again. He has been so full of gas for so many years that his colon is completely dilated. It is without a doubt a big contributor into our feeding intolerance. Dr. O took biopsies to look at the whole colon, but especially the rectum. He needs to rule out Hirschprung's Disease. The biggest shock of the day though was that Dr. O found a growth outside of Alex's colon (pushing into his colon).  It could be a cyst or a tumor. Both Dr. O and Dr. I (surgeon) feel like it is benign, but it will require more testing and likely surgery to remove it regardless of what it is. We have made the choice not to share this with Alex right now. He is emotionally exhausted from worry over the past month. He needs/deserves to go on our trip and be a kid and have fun. We will address whatever we need to when we get home!

Thank you to everyone who lifted us up today. We felt the love and prayers.


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