Glenn and I went to our consultation with the urologist today. We are blessed to live in an area where Texas Children's is growing. Dr. Jones sees patients 2 days a week in The Woodlands and we get to avoid the drive, parking, and pain that would be involved in a visit to the med center. The downside: a 2.5 hour wait to see the doctor. Yes, you read that correctly. 2.5 hours!!!! There was some warning. About 30 minutes after we sat down, a sign went up at the desk stating that he was running 1 hour behind. So after 1.5 hours, I was directed to a room. But then I waited another hour there. Glenn ended up needing to leave after 1 hour of waiting. We had a babysitter that we did not want to keep to long, and the boys needed dinner and parent time! The waiting room was full of kiddos waiting to see many different types of specialists and therapists! It was nuts. I was in decent spirits though and tried to stay positive.
When the doctor came in, he hadn't reviewed Reid's photos. To say he has a crazy day is a bit of an understatement. He went and retrived the report, and drew me some pictures of what was going on in his body. He said that he would review the ultrasounds but that the report was very detailed, and he didn't expect to find anything. He told us that this diagnosis is normally point on, and not easily misdiagnosed. He explained that there is a limited risk, 10-20%, of Reid having some back flow problems, which would make him go on antibiotics for the first 6 weeks of life. He also said that he would have an ultrasound within the first week to confirm the diagnosis. Within 6 weeks we would have two other tests to determine if there is backflow and something else. These will be done together. If the backflow issue is non-existent after the tests, then he will be allowed to come off of the antibiotic. **If there is backflow, the bacteria in the urine could cause infection and damage the healthy kidney. If there is backflow then more steps will be taken at that time.
He said most likely he will have a kidney that reduces in size as he ages. We will have routine ultrasounds every 3 months. This will be to monitor the growth of the healthy kidney (should grow faster since it is picking up the function of what normally two organs do) and to make sure that the cystic kidney does not get bidder or cause any problems. There are rare instances where one of the cysts can grow in size and push against the stomach or other organs. In that case it would need to be removed. If there are any unforeseen issues in his first week of life, we will notice that Reid is not feeding, peeing, or gets a high fever.
I came away feeling good and bad. I think I have thought about how I am feeling, but not shown how I am feeling. I have not let it effect my life, my job, my kids, or my mind in a huge way. I have some friends that I have talked to about my fears and my feelings about this. But I have not cried, and I have not really processed outwardly. The doctor today asked me if I was going to circumcise the baby. It occurred to me today that the choices I make medically for this little guy are going to be questioned, and opinions will be formed, and several decisions will be made for me out of necessity. Choices that make my skin crawl. Antibiotics for a newborn baby for at least six weeks and longer up to a year if there is a problem!!!!!!!! While I realize the necessity in this situation, it still bothers me that a foreign product will be needed daily to help him grow and mature. And with everything comes side effects, and changes in the body's normal state. It bums me out. All of these things we will deal with in his first months and years bum me out.
Please don't get me wrong. I am grateful to God that this is manageable. I am grateful for the chance to witness miracles on a daily basis through His work. I am grateful for my life, and that of my children. I am just still very frustrated that we are going to be dealing with this and not simply enjoying my third and last baby with the whimsical and laxidasical attitude that every mom of three has.
My final thought with all these others constantly creeping in my mind is always...I will go to the ends of the earths for you little Reid. If antibiotics, extra care and attention, frequent tests and doctor visits is what keeps you with us and healthy- BRING IT ON!
4 comments:
Heather...you are strong and beautiful and Reid will be too! Caroline and I pray for Baby Reid every night without fail! Please let me know if I can do anything at all!
I'm so thankful for you and your family that medical options exist for your little Reid. He's going to be amazing. If I have seen anything about your character as a mommy and what you've been through already...I know without question you aren't even going to realize how above and beyond you will go for Reid and your family. You truly amaze me!
Heather, you are an inspiration. You are an amazing mom and Reid is sooooo lucky to have you! These babies don't always come to us with easy situations but they come to us because they know we can handle it, even if it doesn't feel like it at the time. Hugs to you mama:)
http://www.intactamerica.org A plethora of information on raising healthy, WHOLE boys. I hope this helps. #Intactivist
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