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Monday, February 8, 2010

How your life can change in just 1 week!!


So a week ago today we were at Lebonheur for Carter's 1 year Urology test. Everything has been going fine as far as Carter's cathing routine, and he has not has had a single UTI in several months. Not since since we haven't had to reuse and wash his caths anymore. So I was really not that worried about going in for his urodynamics and VCUG. I just figured that this was just a "Routine" test that sucks to have to go do, but then we would be done for the next year. BOY WAS I WRONG!!!
First we went to meet Mrs. Judy for his Urodynamics test, which he did really well with. You have to stay completely still during the test and he did a wonderful job at that. So then after that test we went straight to get his VCUG. Have I mentioned that I HATE this test. They have to strap him down on a board with his arms above his head. NOONE should ever have to see your baby this way!! The Radiologist and the same tech were the ones that did his test after birth, which was nice. So right after starting the test the Radiologist looks at me and says "Carter didn't have reflux did he?" And I said "NO" and then she looked at me and said "well he does now!" My Heart SUNK!!! If you don't know anything about Kidney Reflux it is graded from 1-5, with 5 being the worst, and what do think Carter had, but of course Grade 5 VUR (http://en.wikipedia.org/wiki/Vesicoureteral_reflux)!! We couldn't believe it! He has had absolutely NO symptoms!
So after that terrible test we headed straight to Dr. Jerkins office, his Urologist to see him and have an ultrasound. I was terrified to go! When Dr. Jerkins walked in he said that Carter had been doing wonderful and when he saw the report and the images that he thought he was looking at the wrong patients chart. He told us that the cathing that we were doing was not enough to protect his kidneys and that he would have to have surgery! My Heart SUNK AGAIN! I mean are you kidding me, as if this child hasn't been through enough. He told us that the surgery that they usually do to repair this he is too young for, so they will do a temporary fix for maybe around 2-3 years until he is bigger.
The surgery that Carter underwent Thursday morning is called a Vesicostomy. You can read about it here: http://kidneyreflux.info/Vesicostomy.php. Basically the cut a slit around an inch and a half wide in the top of the bladder and pull it up to the skin and turn part of it inside out and sew it to the skin. So anytime his bladder fills with urine it leaks out. This will protect his kidneys, bc before when his bladder would fill the urine would go straight to the kidneys. Dr. Jerkins told us that during surgery he could tell that his bladder was already starting to show some irregularities and show some sign of damage, but it could have been worse and that its a good thing that we caught it when we did. Carter did really well with his surgery. Infact, before Thursday Dr. J told us that we would atleast be staying one night in the hospital, and maybe go home the next day depending on how he is doing. Well we got to go home Thursday night! We were thrilled. It sucks staying in the hospital, esp when Webb and I do all of the care for him, we might as well be in the comfort of our own home! We gave Carter his first dose of Narcotics that he has ever had post surgery on Thursday night. He had baby Lortab, we wanted to make sure that he was comfortable while he slept. He did a great job, but leaked through his diapers and clothes all over his crib.
The biggest challenge for us thus far is figuring out a diaper routine that is going to work for us. Right now we went up a size in diapers to size four, so that there would be a higher rise and we are using a newborn diaper across his incision to soak up the urine at the top of the diaper, if not it comes out the top and will get all over him. Since we went to that technique he has had dry days and nights. The downside of this technique is the cost. We are having to change him just about every waking hour and using two diapers each change. So we ordered some cloth diapers last night and are going to try those out. It may be more expensive up front, but could save a small fortune in the long run. So those should come in this week.
As far as my emotions, I have been holding up pretty well(I guess). But I do have my moments! I go from everything is going to be ok, to pissed, to sad, to frustrated and back to everything is going to be ok! But I just have to keep on going and stay strong for my precious boy. I just get pissed and hurt bc he has been through so much and does not deserve ANY of it(and this is just the beginning). But on one happy note, he has NO idea and is still probably the happiest baby I have ever seen. If you saw him today you would NEVER know that he had surgery less than a week ago. He is crawling and moving all over the place and acts like it doesn't bother him a bit.
I want to thank everyone that has been praying for and thinking of our family during everything we have been through, don't know what we would do without everyone, We LOVE YOU and truley appreciate your Good Thoughts!!
Sorry this post is so long, but on a happier note this week, I ORDERED MY NEW LENS!!!! and it should be arriving tomorrow, right before my Birthday and just in time for Carter's Birthday Party!!! YIPPEE!!
Here are a few pics post surgery in PACU:

Court

1 comment:

  1. I recently came across your blog and have been reading along. I thought I would leave my first comment. I don't know what to say except that I have enjoyed reading. Nice blog. I will keep visiting this blog very often.

    Lucy

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