Long post warning.
Because Tyler was discharged from the hospital early we were able to move her post-op appointment to yesterday morning. She passed with flying colors. When talking about the recovery process and core re-building exercises, Dr. Hsu even told her she had great abs. Lol. I told her to take that compliment as he is the only person who has actually seen them up close as personal!
She was Dr. Hsu’s surgery #284. She got to put a pin with her number where Highland is on a map of the US that shows where all of his MALS surgical patients come from. Before she left the appointment Dr Hsu asked her if she would do him a favor and speak to a 16-year old girl and her family who were in the office from Florida getting her initial MALS diagnosis. It was really awesome to watch Tyler talk to this family about her experience with MALS and her surgery. My heart was full.
One of the neat things about Dr. Hsu besides his focus on this rare condition and developing a specific program and surgical technique to change the lives of MALS patients is that he and his staff treat their patients like family. They also understand that by the time the patients get to them they likely have suffered years of pain and GI-appearing symptoms. They have been told all tests are normal and they are fine. They have been referred to psychiatry and counseling. They have had to quit activities and some taken out of school. They have had friends and family and coaches say they are making it up and not really hurting - I think this hurts the most. They have lost out on opportunities because of the pain. Their personalities change from chronic pain. And they have doubted and questioned themselves. Their parents have doubted, questioned, cried, screamed and felt tremendous guilt about all of it. They come to him broken in so many ways. He knows this. He gets it. And he educates his staff and the staffs at the hospitals he works out of so they handle the patients and their families with great care.
Since Tyler go the ok from Dr. Hsu, we flew home yesterday so she can continue recovery here. She has surprisingly few restrictions at this point. The recovery will not be a straight line. It will be up and down. She knows this. The surgery was super-invasive with the doctor basically having to touch every organ in the abdomen to access the MAL and cut it off the spine then strip nerves from muscle tissue so there is a lot of internal healing to do that can take up to a year to finalize.
She is doing better than average at this point and I expect that to continue. She’s looking very forward to being able to go to the gym and excercise without feeling like she’s been punched in the gut.
Thank you everyone for your support. Thank you Auntie Amy and Jeff for picking us up at the airport and Grandma Zobrist and Aunt Stacy for the welcome home banner. It all means so much!
P. S.
If you ever get the chance to support the Ronald McDonald House Charities, please do. They are amazing. They take great care of their families. They put on programs to help the patients and families relax and have a little fun while staying there. One of the things we did was to paint a picture following the lead of a NY artist. It was a lot of fun. Tyler and her surgery buddy, Jenna, were able to be up and participate and it was nice to watch them focus on something other than their recovery. It was also a lot of fun for the parents.
