Surgery #19, 20 & 21 Mace, Bladder Augmentation & Mitrofanoff

Hayden will have a 12-hour surgery here in Austin with his beloved and trusted urologist on Monday. The recovery is anticipated to be 6 to 8 weeks long. If there are complications it could be longer. If it is shorter, we will be pleased and have witnessed miracles before.  This surgery will remove part of his bowel, he will have his bladder rebuilt with part of the bowel, and he will also remove the appendix and use it for a very specific purpose.

After weighing the pros and cons for months and trying to get control of the constant infection that has been managed by being medically monitored regularly with infectious disease consultations and a heavy dose of antibiotics, the scale has finally tipped and we scheduled surgery.

The elective surgery is to primarily give Hayden independence for his long-term future goals and lessen his reliance on nursing and the difficulty of someone in a wheelchair taking their pants on and off all day.  We also have hope that it will stop the reoccurring infections due to his urological abnormalities and that he will no longer need daily antibiotics.  The last surgery that he had, number 18, was due to an abscess that had grown that was untreated by the antibiotics. The abscess has again started to grow back.  Pictures are not appropriate to show for this procedure. You're welcome to search it out on the Internet. None of it will be done laparoscopically. It will be a large incision on the front of his body.

I feel fortunate that Scott will be able to be with me at the hospital during the first week. We respectfully request that no one visit us at the hospital until he is in the clear from infection risk.  If you would like to help, we would love humor. Daily affirmations are good but laughter is the best medicine.

As a mother, you never get used to this and it never gets easier, but we do get better at grilling the medical staff with questions and requests. There will be more surgeries on the horizon. We constantly monitor the benefits versus the risks. When the scale tips we schedule surgery. In the meantime, we do our best to enjoy every moment.  He is the greatest teacher I have ever known.