So while we were there for the testing Mayleigh had her stoma stitched up on one side and this will prevent her from getting any more UTI's. The type of colostomy they did in China was not what they would have done here so they just did a quick revision while she was under for the tests. Oh and let me update you on the awful ER visit at St. Johns! Our pediatrician was really upset about what happened and encouraged me to write a letter to the CEO of St. John's and the director of the ER. After sending the email late on night I was called the next morning with a conference call of people who were all apologizing and basically kissing my butt! ;) They will not be charging me for my visit and they are going to be speaking with the ped surgeon who refused to see me that day because it was "not an emergency."
So back to Columbus...where I KNOW we will never be treated that way! Nationwide is such a wonderful hospital! So Thursday we started off by meeting Mayleigh's colorectal surgeon. It's funny because to my imperforate anus (IA) adoption FB group, Dr. Levitt is a superstar!! And now I know why everyone just loves him. He was just so nice and had such an aura about him if that makes sense. He was so sweet with Mayleigh and his nurse was hugging me saying how good it was to meet. Just so warm and friendly. It sounds weird but I don't know how to explain it. With such big surgeries ahead and the fear and anxiety that comes with this, Dr. Levitt has a way of just making you feel so at peace about everything!
Mayleigh did great through everything. I spoke with Dr. Levitt after he finished with the test. Basically he and the urologist went in and were able to see where everything is located and how easy or hard the surgery will be to repair everything and hook it all back up. IA has two categories really. High and low. Low is easier to repair. Mayleigh's is unfortunately a little high. I was a little discouraged when he told me but again, he is so confident about the surgery that he just makes it easy to take in. The biggest news we were waiting on is her MRI and the xray of her sacrum. About half of kids born with IA have malformed sacrums or a tethered spinal cord. This lessons the chance of the child being continent. We are praising God tonight after getting the news that Mayleigh's sacrum is normal and no tethered spinal cord!! Dr. Levitt said that these are great predictors of continence!!!!!!!! Such a relief to know that for one she has a better chance of being normal with her bowels and two that she will not have to undergo another major surgery to untether her spinal cord!!!! Such GREAT news!!
So now we enjoy our summer and get settled in Chicago and we will be doing the first surgery in Oct. They will then open her vagina and her rectum. It will be about an 8 hour surgery. We will be there probably about 5 days and then she will come home with a catheter for about 10 days. The hardest part I have heard is keeping the kids laying low. But for now we are going to enjoy our summer and start worrying about surgery as it gets closer!
Mayleigh and I fit in a little fun while we were in Columbus too. Two of my high school girlfriends live there and we met up for an evening. We hadnt seen each other in about 15 years. Such a fun night to catch up and meet each others kiddos!! Looking foward to seeing them more when we are there for surgery! I also have a good diving friend who lives there who I am looking forward to seeing next trip. Ended up not having enough time this trip. Sorry Angie!! :(
The biggest bummer about our trip was not being able to see my friend who I met through our IA FB group. We have never met in person but have become good friends through this journey. Our girls both have IA and lived in the same orphanage. (not in the same room) They travled to get their daughter a few months before we did. So from panicking the day we accepted Mayleigh, to advice for our China trip, to giving me all the info on Dr. Levitt, to just texting about life...she has been amazing!! Once we got bumped up with our appointments we thought we were going to be there at the same time. We were SOO excited! Unfortunately, at the last min. they changed a few appointments around so neither one of us had to stay the weekend and I got bumped forward and her appointments got bumped back. We ended up missing each other. We will meet someday! :) The sweet thing is how apologetic Dr. Levitt was that we didnt get to see each other! He is just so caring. We are in such good hands!!
Thursday night to my surprise I found out a family we traveled with to China was coming to Nationwide Friday for some testing! We were so excited when we realized we would see each other! Unfortunately, our girls overlapped being under anesthesia so they didnt get to see each other. But how fun for Stephanie to see Miss Mayleigh. She finally got to see the real Mayleigh. Not the depressed, sad, sick Mayleigh that was in China! And I was so excited to see her daughter, Abby! What a fun surprise!! :)
All in all we had a great trip to Columbus. Some great bonding time for Mayleigh and I and so much peace about what is to come in the future for this little peanut!! We are so blessed to be in such good hands at Nationwide. Many people have said how great it is that we are moving to Chicago and how I am sure we will find good surgeons there for Mayleigh. NO WAY! We will never go anywhere but to Dr. Levitt!
At the park enjoying the warmth!!
Mayleigh and her crazy flexibility!! :)
At the Ronal McDonald House getting ready to head across the street to Nationwide Hospital! The wagon is a lifesaver!!
Every time we passed Ronald, M said "guy"! :)
Yah!! Seeing Stephanie!! So fun for her to see a happy Mayleigh!! :)
Getting prepped for her test under anesthesia! She loved the socks!
I am telling you...her flexibility is just crazy! All M's friends from China are that way!
love this girl to pieces!!
being silly!!
This was right outside the surgery room. She was winning everyone over with her ridiculous cuteness!!
The team of doctors about to go in. Crazy! So beyond thankful for all of them!
This was a nice surprise while M was under and I was nervously waiting!! Got to see Ms. Abby who had just woke up from her testing!! She wasnt her bubbly self! But sweet as ever!!
Finally got to hold my sweet girl! She was tired!! But perked up quickly with some snacks!
Heading home!!
I was soo bummed that I had to miss Brennan's first game of the season! He had a blast and luckily I had friends to capture video and pictures for me!
Cant wait to watch him play tomorrow night!!
