Sunday, July 20, 2014

Cincinnati, Take Two



I know many have been waiting for an update since our Cincinnati trip but I felt like my emotions were not in a good place to write effectively. Time has allowed us to process all the information, settle our emotions and get into a new routine.

Upon returning from Cincinnati, we continued to give Mia daily foley catheter enemas. It was extremely rough in the beginning and we just wanted to say forget the whole thing. Thanks to a support group and her doctors, we stuck with it. We are so glad we gave it time because she is now an enema champ! As usual, Mia has risen to her challenge. The best part is she is in big girl undies remains stool free during the day. No more having to be "changed".

With her bowels being managed, our focus is now on Mia's urinary system. She has to wear thick, adult urinary pads due to her constant leakage. Her new medication, Oxybutynin, helps slow her leaking just enough to be able to stay in underwear with a pad. Unable to empty her bladder fully, Mia is now getting urinary tract infections. This is very problematic for her single kidney. That being said, we are headed back to Cincinnati for more procedures and testing of her bladder!

 Mia and I will be flying in on the 30th, staying at the Ronald McDonald House and flying home on the 2nd. We will meet with the urologist and gynocologist while we are there. During our last visit under anesthesia, they discovered Mia's vaginal opening, which was reconstructed when she was four months old, has closed. Yes, this will have to be surgically fixed.

To date, we have been told that most likely Mia will need bladder augmentation (increase the size of the bladder), bladder neck tightening (to prevent leaking), vaginal reconstruction, the M.A.C.E. or Malone procedure (http://www.cincinnatichildrens.org/service/c/colorectal/treatments/appendicostomy/) to manage her bowels and the Mitrofanoff (http://www.aboutkidshealth.ca/en/healthaz/testsandtreatments/procedures/pages/mitrofanoff.aspx) to manage urine. Basically, they will reconstruct and reroute her systems all in one surgery. It cannot be done here in Rochester so we will have to go to Cincinnati. Recovery time is 4-7 weeks.   
      

The big questions, "Is all of  this necessary?" Of course the answer is  both "Yes" and "No" so I will try to simplify. She has to have her vagina repaired, bladder tightened and most likely augmented (we will know more after this visit). Those surgeries are a must and her bladder surgery cannot be put off if we want to keep her kidney healthy. We do not have to do the Malone or Mitrofanoff, however, we feel it will improve her quality of life significantly.

If we do not do the Mitrofanoff for her bladder, she will have to catheterize herself through her urethra to void her urine every 3 hours. Because her bladder does not function properly, she has to empty it using a catheter in order to keep her single kidney healthy. The Mirofanoff will allow her to place a catheter in her abdomen instead of her urethra, therefore making it much easier for her. For her bowels, she can continue to get daily foley catheter enemas but she will always need assistance with her bowels. The Malone will allow her to administer an enema from her abdomen. Again, the goal is that she can eventually do this by herself and not have to rely on someone for toileting needs. Added benefits include her ability to be more like her peers, remain stool free and out of diapers, swim without worries and not smell. She may even be able to go on a play date without one of us! She wants to do big girl stuff like her sister and this can give her that!

We have thought long and hard about this. We feel that if Mia has to have surgery anyway, we should do the whole thing. I belong to a spina bifida group and many have had these procedures. I have yet to read one person who has regretted it. The majority of comments center around how much easier their lives are and wondering why they they waited so long to have it done (comments are from those with spina bifida themselves and those that have children with spina bifida). The older she gets, the harder the surgery and longer the recovery. She is young. School is more manageable in first grade than it is in fourth. Her friends will not really understand at this age and it will just become "normal" for Mia.

This surgery will be a big one but hopefully with a big payoff for Mia! It is not scheduled yet but anticipating it will take place this winter. In the meantime, we will try to prepare ourselves for the difficulty of watching our angel fight, yet again, through a painful reality of her life.