Miracle McKinley

McKinley getting her night time medicines....

One of our good friends came up with the name Miracle McKinley and it is so fitting for her.  She continues to surprise us and the Dr's with encouraging news. 
We got the MRI results back and both the Urologist and the Surgeon were encouraged by what they saw.  It appears that McKinley has the muscles needed to make a functional rectum!  Although she doesn't have the actual rectum, that is something they can build, but they can't build the muscles, so it is so great that they are there!  We're not sure if the muscles are functional or not, but we'll cross that bridge when we get there.  In the mean time, our surgeon feels that it would be best to do the reconstructive surgery sooner rather than later.  The reasoning for this is that 1. she is in good health currently, her kidney is functioning well so let's take advantage of that  2. she isn't eating solids yet so her stool is softer and will be easier on the rectum as she begins to use it.  (Did you ever think you'd be following a blog that talks so much about rectums and poop??  I sure never thought I'd be blogging on these topics. :))  We have a meeting with the surgeon (Dr. Healy) and the Urologist (Dr. Grady) on Feb 24th and we're going to discuss a timeline for surgery then.  Most likely it will be within the next month.
The surgery will be 7-8 hours long and will require a 7 day minimum hospital stay.  This is by far the longest surgery and hospital stay that McKinley has had yet. (Aside from her NICU stay of course).  I am worried about her being under anaesthesia for that long but I know that the anaesthesiologists at Children's are amazing and that she is in great hands.  I'm also worried about a hospital stay that long and how I can be with her and Brooks at the same time.  But once again, thank goodness for friends and family who are willing to help!  The surgery will likely be done in 4 stages with the reconstructive surgery being the first.  The second surgery will be a few months after the first, and this is when they will take down her colostomy, and she can try using her rectum.  The 3rd surgery may or may not be needed, but this one would be for her incontinence, and they'd want to do that surgery before she goes into elementary school.  There is something with her bladder that needs to be worked on and Dr Grady is concerned that it may damage the nerves and cause her to not be able to feel when her bladder is full, and therefore won't know when she has to go to the bathroom.  This would be a problem with any person, but is even a bigger problem for McKinley who pees 4 times the amount of a normal person because of the fluid intake she needs to keep her kidney functioning.  The 4th surgery would be after she hits puberty to make sure all of her reproductive organs are hooked up and functioning properly.  The Dr's keep reiterating to us how difficult it is going to be to potty train McKinley so we're expecting that to be a challenging time. (As if it's not challenging enough with a perfectly healthy child!)
So, we continue on this crazy journey with McKinley.  She has a long road ahead of her and at least 2 more surgeries before she turns 1, but given every thing that is "wrong" with McKinley, she is doing so amazing!  She is a happy, beautiful child that captures everyones heart the first time they meet her.  Thank you for your prayers and please continue to pray that God will guide the hands of the surgeons and anaesthesiologists.  Our prayer is that the surgeries are a success and that McKinley will heal well, and quickly. Love to you all!