The one minute bladder

In December of 2012, just 2 months after we took Greysen out of school, I noticed he was running to use the bathroom quite frequently. I started to wonder if maybe he had a bladder infection or a uti but he didn't have a fever or any other sysmptoms. You wouldn't know it by how much we visit the doctor now but I really don't take the kids to the doctor unless they have plenty of symptoms that warrant a trip there. I gave it a couple weeks but decided I better take him in. Our doctor wasn't available and the only other opening was with Doctor Jagodzinski whom we had never seen so I relunctantly made the appointment. We got to the doctor and I explained to the nurse that Greysen had been having frequent urination but no other symptoms. The doctor came in and examined him and said that his urine tested negative for any bacteria. She wasn't sure what was causing it but that sometimes little boys can have problems with bladder control. The thing was, Greysen had never had a problem with his bladder before. That was the part that DID work so I was actually concerned that out of no where he would use the bathroom, flush, then immediately go again. I even timed it once because I thought maybe I was crazy but nope, every 1-2 minutes he was going! I really liked this Dr. Jag because she was very thorough, didn't rush, and seemed like she actually cared. She asked if I had anymore concerns and I began to explain Greysens history of constipation. I told her that we had been trying the miralax and now that he was having bladder issues I felt like more investigating needed to be done. She felt on his tummy and could feel a large amount of stool and explained that maybe the constipation was now interferring with his bladder. I felt so bad for my boy. It seemed like his issues kept getting worse but I knew that now was the time to finally get to the bottom of this before he was in school. At this point I had had enough. I knew we needed an answer and that meant me being aggressive. Even though we had seen a specialist a few years back (remember the crazy bird lady??) she told me it was probably time to see one again. She explained that a new pediatric gastroenterologist had been in Billings 6 months and he was very good. I felt relieved. Finally, maybe someone will listen? She gave us the referral and the appointment was set for March. It was the longest 3 months of my life but it gave me time to write up Greysens history and get my questions written down. I was not willing to see a specialist again unless he actually listened to my concerns and acknowledged this was an issue bigger than constipation. I wasn't going to see a specialist again that had no plan of action and wasn't willing to do some homework to diagnose my son. We HAD to figure out what was wrong with Greysen...it just wasn't an option anymore.

Denver Bound...

We took Greysen to see Dr. Flass today and the good news is his stricture doesn't feel as tight as it was 2 months ago. The bad news? We don't know what is causing his incontinence. More bad news? This means a trip back to Denver:(

This week Greysen will do another Sitz Marker study to check his motilty. The test basically measures how fast your food is digested. This is done by swallowing several plastic shapes "markers" at the same time everyday for 3 days. On the 4th day, an x-ray is taken to determine where the markers are at in the colon and if they are moving thru at a normal pace. Its a pretty cool test plus Greysen gets to eat plastic shapes. Life doesn't get much better than that, right?! He did this test last year before he was diagnosed and the shapes that should have cleared out of his colon within 6 hours had barely moved anywhere after 4 days!!! It will be interesting to see how much better he does this time and, even if his motility is slow, I know it won't be as slow as last time!

Dr. Flass told us that even though Greysen has improved since having the Pull-thru surgery, he hasn't improved as much as he would have hoped. There isn't the technology here in Billings to be able to test the things that need to be tested so he is going to talk to Greysen’s surgeon in Denver and try to coordinate a post-op follow-up along with some other tests. He is also going to see if Greysen can get into the bowel management program. This is good news for us as I have been struggling with Greysen’s day to day issues in not knowing how to help him. A few options may be to place a cecostomy. This is a tube that is put in through the skin and goes into the intestines. It is basically a way to easily flush out the bowels everyday without having to use laxatives, enemas, etc. It’s more effective in keeping the bowels cleaned out and can help with incontinence. This would be a better option than having to go back to a colostomy. They may also use anorectal manometry to be sure his nerves and muscles are working correctly. Hopefully, I will hear back from Dr. Flass today after he talks with the doctors in Denver and we can see what they want us to do. So I guess for now we just wait until we know what the plan is and of course I will update you all once we know! We appreciate all your comments and encouragement on our blog. It’s great to know who is praying for us and thinking of us during this crazy time! As I’ve mentioned before Kyle is making a job change in July and will be the associate/family pastor at Big Timber evangelical!  We are SO excited about this new opportunity but it is a lot to think about selling our home, moving, and transitioning our family, all while dealing with Greysen’s health issues.

If you’d like to pray for us here are some specific requests:

·         That we would be able to get into Denver Children’s Hospital in June or July before Kyle starts his new job.

·         Pray that Greysen would not be anxious about the doctor’s visits or about the move.

·         That Doctors would be able to find the problem and get Greysen to a better  place of healing and recovery

·         That our house would sell fast so we don’t have to be dealing with a sale in the middle of going to Denver.