3 Lloyd Boys and Our Journey To Mayleigh Wei: Our first trip to Nationwide Children's Hospital

Tuesday afternoon Mayleigh and I headed to Columbus for our first visit with her specialists. It would have been nice to have the whole family go but knowing it was going to be a long drive and we were only going to be there overnight one night, we decided it was best for Jeff to stay home with the boys. So off we went....alone. I was terrified about that long of a drive by myself. She doesnt hate her carseat but she certainly seems done after 15 or 20 min. So since I was driving Jeff's car and he doesnt have a DVD player like the van, I borrowed one from a friend hoping that would keep her occupied at least some of the trip. I also left at her naptime on Tuesday afternoon and that for sure helped. All that worrying and she did great!! Rarely cried and she slept a lot!

Wed morning they had her scheduled for another kidney ultrasound, then a VCUG, and then we were going to meet with the urologist. He is the surgeon that will correct the chloaca malformation.
Ultrasound was fairly easy...I mean, Mayleigh cried but not because it hurt, just because she didnt like being messed with. But we made it through and we were on to the not so fun test. The next test was the VCUG which is a test that will show them if her urine was going back towards the kindeys, otherwise known as reflux. They explained to me that they were going to insert a catheter and then it would splice off and one would go towards the rectum and one to the bladder through the urethra. I ended up leaving the room. Don't know if that was the right thing to do. I dont know if it would have been better for me to sit there with Mayleigh but they gave me the option and I really didn't want to watch. She was going to scream bloody murder whether I was standing next to her or not! After way longer than they said it would take, they told me they had a lot of trouble and couldn't get the catheter into the urethra. Actually I believe he said they couldn't find it. ??? I am still confused. I am still learning all about her anatomy and how all these tests work. So after all that, they didn't get to do the reflux test because they couldn't get to her bladder. The poor girl was traumatized from having so many catheters stuck in her and she has been quite sore from it. They said she would be sore when she peed for the next few days. And I usually know when she is going, she stops and cries and then a few seconds later goes about her business. :(

We spent the next hour and a half with the urologist. They also bring in a social worker for families going through these surgeries. I was so pleased with the urologist. Super nice, easy to talk to and was very patient with my questions. Then of course after soaking all the info in, I came up with so many more on my drive home. We are getting that taken care of though. We were pleased to hear her kidneys looked "beautiful" he said. So I assumed that would indicate that she doesn't have the reflux. But I guess not. Dr. J just said that just means they are functioning properly and there has been no damage from the UTI's. Kids with these issues can have kidneys that don't function properly so we were so happy to hear that Mayleighs look great. After examining M he thought her sphincter looked well formed and looks normal. (well, without the hole) That is really great because in order for her to have bowel control, she needs those muscles. They were happy with the way that looked!! And we are too!!!! Obviously all the malformations can be fixed, but sometimes there is nothing you can do if there is no muscle control. So we are thrilled for things to look good as far as that goes.

The Dr. did explain that there was a large amount of "junk" and mucous in her rectum. So after I had mentioned that the colorectal surgeon had mentioned getting her stoma cleaned out, they thought this was needed after seeing her rectum. So when I thought we were heading home, we were actually making one more stop to see a stoma nurse who was going to teach me how to clean her out! Ha! I looked at Dr. J and said, "are you kidding, I did not become a nurse for a reason!" To clean her stoma out they had to put a catheter into her stoma to drain the rectum. NO THANK YOU! The good news is after meeting with her, she got it cleaned out really well and didnt think there was any reason for us to have to do it. PHEW!! Mayleigh screamed through the whole thing, even though there is no feeling in her stoma so it didnt hurt. At that point, she was just done with people messing with her and pinning her down on a table!!

Cruising in the wagon to the next stop in the hospital.

As we were waiting for the stoma nurse, there was this sweet Chinese nurse at the desk. She was loving Mayleigh. Talking to her in Chinese, holding her hand, and just loving her. We talked about where Mayleigh was from and where she was from. It was really fun. She wanted to take a picture of her so bad for her daughters (but they arent allowed to take pics of patients) so I took one and texted it to her. She was really sweet. Mayleigh liked her and pretty much everyone else in the hospital. Waving as we were walking through the halls. Smiling at all the doctors. (before they messed with her!)

So this is what we have for the future as far as medical stuff. In the beginning of April we will head back for a few days to do some more testing. The two surgeons will go in together and scope Mayleigh (under anesthesia) to see where everything is located and to come up with a plan for the surgery. She also has to have an MRI to check for a tethered spinal cord. Kids with imperforate anus can also have a tethered spinal cord. It happens at the same time in development. We pray she does not but if she does, its another surgery to fix that. To be honest, I dont know a whole lot about it, we will cross that bridge if and when we need to! She has a few other tests but to be honest, not sure exactly what they are!

Then it looks like we will do the first surgery to reconstruct the anus and the vagina in May. I had heard the surgery is about 8 hours! YIKES!! :( Then I think we will be in the hospital for 5 days for recovery. Then 8 weeks at home to heal and in July we will go back for the LONG one. They will take down the colostomy and hook everything back up so she can poop normal. That one we are in the hospital for 2 full weeks and the 3rd week we will be at the Ronald McDonald House seeing doctors. The first week after the colostomy take down Mayleigh cant eat. Then the second week she can.

When I think of all this at one time, it is extremely overwhelming. So one step at a time. One visit and appt at a time. We can handle that. The good news is by going to Nationwide this past week, it gave me a sense of what this will be like and a picture in my mind of where we will be. The hospital is amazing. So kid friendly. I heard the rooms are amazing with huge tv's and video games. There is someone that comes around to do art projects with the kids and siblings daily, their are playgrounds on site, and bagels and books where the kids get free books. All of this makes it easier to think that it wont be so bad for the boys when they are down visiting. It is going to be tough juggling it all but we are so lucky to have a lot of friends and family ready to help. I also have a few old high school friends and an old diving friend that live in Columbus and have already reached out to let us know that they will be there to help too. We truly have so much support, it is amazing!! The other great news is that my friend who I met through a FB group and I are trying to get our surgeries booked at the same time. They are totally willing to do that, which is so awesome of the hospital to try and accommodate that. The support with that will be awesome. For the times when are husbands have to be at home and we are there alone will really be helpful. We will have each other for support. I am really excited about that and hope our plan works out!