Several people have asked for more details on Parker's upcoming surgery to fix his Vesicoureteral Reflux. I don't think I do a very good job of explaining it so I thought I'd attach the MAYO website with the details so those people can educate themselves if interested. To see that, click here. Parker's surgery date is scheduled for Monday, September 30th at MAYO Clinic in Rochester, Minnesota. This date is going to be here before we know it. I don't even know where August went?!?!?
Paul and I are opting for the less-invasive endoscopic surgery. This is explained under the "treatments and drugs" tab. Paul and I feel good with this option even though the success rates are lower. If there's a chance we can "fix" this issue without major, open surgery and a huge recovery time then we want to try that first. This is also what Dr. Kramer at MAYO highly recommended in Parker's case.
We will repeat some testing three months following Parker's surgery to find out if it worked. If so, then he will no longer have to be on his prophylactic antibiotic and will be good to go. Let's hope and pray that is the case.
In the meantime, we are praying that Parker stays healthy and does not get another urinary tract infection. If that happens, his surgery will have to be postponed. Parker has been dealing with respiratory problems for about 6 weeks now. We don't believe he's "ill" but something is definitely going on. It may be a reactive airway problem (early asthma), irritation, allergies, or who knows what. The unfortunate part of this is that he isn't tolerating his speaking valve or the trach cap which means he's not able to make many noises. This has been a huge step back and I hope we can figure out what's going on so we can start making progress in this area again. Our major prayer is that whatever this is doesn't take a turn and develop into something more serious - like pneumonia.
Our other prayer request is for Alexa. We found out that siblings have a one in three chance of also having Vesicoureteral Reflux (VUR). Parker's VUR is most likely due to his chromosomal deletion but there's no way of knowing if that is the case or if he would've had this anyway. So, the MAYO Physician recommended we have Alexa tested as well. She does have some of the symptoms (not all) so we have decided to go ahead and find out for sure.
Alexa goes in for a Voiding Cysto-Urethrogram tomorrow at Children's Hospital in Omaha. Alexa has never had any major medical tests done and screams as though she was dying if she scrapes her knee. So...needless to say, Paul and I are not looking forward to this testing. We have tried to prepare her, are bribing her with treats if she does well and I have asked for a child life specialist to thoroughly explain the procedure to her once we get to the hospital tomorrow. Hopefully, all will go well and my big girl will surprise me. We also pray that they find no issues and Alexa gets a clean bill of health.
Thank you to all of you who ask questions, want to keep updated on what's going on with our little family and those of you that pray for us. We are comforted so much by this and feel so blessed to have such a wonderful support system and network of wonderful people who care for us! THANK YOU!!
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