Here are the details: We received the phone call we have been waiting for. July 18th Mackenzie is set in for her surgery. It's extremely hard to get to very busy, major surgeons together in the OR. The surgery itself will take 12 hours without complications. Dr. Doolin (colostomy doctor) will take about 2-3 hours to do his part and Dr. Canning (urology) will take almost the full 12 hours to do his part. Dr. Doolin will be reversing Mackenzies colostomy and creating a MACE. The MACE in simple terms is a port on her belly in which she will hook herself up to a IV bag of saline solution and flush out her bowels which will exit through her bottom. This will be once to twice a week depending on her body. We won't know specifics until after the surgery. As for Dr. Canning his part is extremely difficult and probably the scariest of the two. He is closing off her bladder neck. This in itself is a really big deal. Once you close it off from below it's a permanent procedure. If they should every come up with something that would allow Mackenzie to go to the bathroom in the future she will not be able too. This is a decision Glenn and I made together. As of now and in the coming future there is nothing coming available. Also with Kenzies anatomy she will not be reconstructed from the bottom. There are too many cons versus pros to do so. Also, from her back surgery when she was a year old (they released a tethered spinal cord) and from the tethering it leaves her incapable of releasing or expelling her urine. Back to the surgery- Dr. Canning will also be reimplanting both ureters in hopes that it reduces the amount of reflux she has to both kidneys. She has a grade 5 reflux to the left kidney which is the most severe and that kidney is extensively scarred. The right side has some scarring but it doesn't reflux as much. They are doing a cystoscopy which is basically a camera to look around (that will be first) just to make revisit her inside anatomy. She has urogenital sinus cavity inside which urine pools and becomes stagnant so he's going to attempt to address that as well. The other potentially bad thing he will be doing is the augmentation of her bladder and intestine. By augmenting them she will be able to go a full three hours without having to catherize herself. If not she would have to do it every half an hour to hour. By augmenting we are putting her at a very high risk of bladder cancer. She will be screened as she gets older.
In a nutshell, Mackenzies bag will be gone. She will catherize her bellybutton every 3 hours to pee. She also needs to flush her bladder to make sure she is getting all the mucus out. As for pooping, she will flush her bowels through her bottom. This is her life plan. The recovery time is 10-12 days without complications in the hospital and minimum of six weeks recovery at home. She will most likely miss a week or two of school (pending all goes well). It's not going to be easy, but nothing every is. She is seeing two psychologist currently. A urological psychologist and a "all around" psychologist. They are amazing and they do wonders keeping her on track. Thanks for patiently waiting for this. I didn't want to post until I had all the details in stone. I will be updating the gofundme.com fundraiser. Thanks for staying with us through her journey. It means more to us to know there's someone willing to listen. Just to get it off our chest makes it easier to breathe.
The only thing I am waiting to hear is if they are going to admit her the day before, but I do doubt it unless Dr. Doolin wants bowel prep then it's a possibility. We are down to 8 trips to Philly until then the date.
We as a family don't like to ask for help, but I don't think there's anything in the world that can mentally prepare parents for a surgery like this. So many potentially bad things can happen or can go wrong during and even after the surgery. I'd like to thank you in advance for any donation to help us get through this difficult time. It will be nice to know that we can solely focus on our children and not have to worry about finances so much. Please keep her and our family in your thoughts and prayers. It will be needed.
Check out STAR Awareness Page on Facebook for further information and to follow her journey after the surgery.
Peace. Love. Happiness. Understanding.