Saturday, May 10, 2014

Hanging On

An update at this point is confusing to say the least so I will try to simplify! After Mia's water soluble enema and review by a team of doctors, our course of action has changed drastically. To begin with, we will not be admitted tomorrow for the colonic manometry study. Instead, Mia will have a same day procedure in which the doctors will scope her urinary and bowel systems. Because she was born with, what we've come to be known as, a cloaca (essentially one opening for her vagina, anus and urethra) and a single kidney that sits on her bladder, they need to determine what "wiring" is present and where everything leads.

Those tests will give us more pieces to the puzzle, however, each doctor we have spoken with strongly believes Mia will not achieve voluntary continence of her bowels. With the lower portion of her sacrum underdeveloped, the nerves needed to control her bowels are not there or have not properly developed. Therefore, we have begun a bowel management program  which entails giving Mia a daily enema to help her achieve "social continence". The idea is that by flushing her once a day, she will empty once and be free of bowel movements for 24 hours until her next enema is administered. We had our quick instructions and given our medical supplies all in about 1 hour. Our first attempt this morning in the hotel was beyond stressful!

It has also been confirmed that Mia will not be able to urinate in a "normal"way. She has a neurogenic bladder that has left her with a very weak sphincter muscle and a bladder that does not contract as it should. She will need surgery, at some point, to addresses her leaking and then she will need to empty her bladder via a catheter. In order to keep her one kidney healthy, we will need to do necessary surgeries of her bladder. We are told  that a healthy bladder equals a healthy kidney. She will be getting a blood work up to determine the current health of her kidney.

Maybe some of you have given or do give daily enemas. For us and Mia it is new and stressful. Our goal is to get to a point where Mia is not crying and the benefit of not having to wear diapers to school outweighs the uncomfortableness. The whole process takes an hour but if it works it will change Mia's everyday life.

My heart is very heavy. No, this is not the end of the world. Mia has her health which I am so very grateful for! But, if I am being honest, I hate doing this to her everyday even though I know the benefits are immense! With tomorrow being Mother's Day, I am so glad all the kids and my mother are here with me (obviously, my husband too!). I cannot thank my other 3 kids enough for their patience and understanding during our "vacation". They have been wonderful. Obviously, my mother has been our saving grace. As usual, she is here for me/us every step of the way. Fourty-one years later, she is still taking care of me.

On a good note, our camera was found and turned in! And a wonderful friend from AQ suggested a local ice cream place and we all enjoyed a nice afternoon! Thanks

Thursday, May 8, 2014

Quick update from Cincinnati

Our drive to Cincinnati went very smooth. It took 9 1/2 hours with just two stops! Grammy did great...and so did the kids. As soon as we arrived, the kids were ready to go in the pool. Nice start to this long week!



Mia's first appointment with Dr.Kaul (GI) was overwhelming but we expected that.  He is gentle, kind and thorough. We are very impressed and grateful to be in the right place! Upon examining and reviewing Mia's history, his recommendation is that she be seen by the Colorectal and Multidisciplinary Team, thus adding to an already packed week. Thankfully, most of the team has been able to fit us into their schedules last minute. Meeting with this team will give us the whole picture so we are able to make decisions that will not only be good for today but also for Mia's future.

Our appointment with Dr. Kaul was over an hour and a half. As our heads were spinning so was Mia's. She completely melted down and could not stop crying. Of course she didn't understand all of our conversations but she did understand that it all means more doctors invading her personal space and putting her through things she will not like.

After our visit, we went to the zoo with all the kids. It was a nice distraction for all of us! As luck would have it, we lost our video camera while we were there. I turned to Dave and said, "It looks like it is going to just be that kind of week."

Last night, Mia was up most of the night. After our first full day and night, we were not very optimistic for our next, much more strenuous, day. Well, little Miss Mia proved us wrong! As usual, she was so brave. With the help of an outstanding Child Life Specialist, she didn't even shed a tear! We were at the hospital from 9-2:30, went to three different appointments complete with water soluble contrast enema, x-rays and an EKG. Again, we tried to end the day on a positive note. The kids swam in the pool and then we ate at the Riverview Restaurant here at the hotel. It is a revolving restaurant that over looks Cincinnati, Kentucky and the Ohio River.

Tomorrow our appointments begin at 7:40am. Dave and I both agree that it feels like we have already been here a week! Each night we are exhausted from overload of information and high emotions. The real hard part doesn't even begin until Sunday when she will be admitted. We are so glad the whole family is here and so is Mia. I would be remiss if I didn't mention how unbelievably grateful we are to have my mother here with us. She is our angel, taking care of the other three kids back at the hotel so Dave and I can both listen, learn and be there for Mia. We couldn't have done this without her.

That's all for now. I hope to post again soon. Thank you for all your prayers. There is no doubt it is helping us get through!