Over the course of the next month the frequency at which Charlie had been pooping was decreasing. It was becoming evident that this new regimen was not working either. At best she was going to the bathroom every other day, or when given the stimulant suppositories, which was not ideal. On the nights that we gave those to her (which was several times each week) we had to chase her around the house to catch her so we could hold her down. We would then have to go through an agonizing hour or so while she cramped and then went to the bathroom. It was miserable to watch and I am certain even more miserable for her. She knew exactly when it was time and would start yelling an hour beforehand, "no pository!" It was heartbreaking!
In mid July, we went back for our next appointment. First, we checked in about Levi and all was good with the exception of the fact that he still had not gained an ounce since January. We reported the differences that we had been seeing since starting the enzyme and she agreed that it had been working, which was awesome. Now we just needed to work on putting weight on him. We were tasked with making sure to up his daily fat intake. It was vital that there was weight gain by the next appointment. His MRI was scheduled for the next day and we would check in after that.
Next, it was time for Charlie. My mom has been coming with us to the appointments so that she could stay in the waiting room with one kid while the other is seen and then we can switch them out. There is nothing like trying to talk to the doctor while the two kiddos are "discussing" who gets to hold the iPad and watch Frozen. When the doctor came in we told her about how the month had gone and that Charlie had been complaining that her tummy hurt more and more. She frequently asks us for a bandaid to put on her stomach since it hurts so much. I expressed frustration and sadness at the fact that no matter what we do she isn't feeling good and we don't seem to be making much progress. The doctor checked her and while examining her Charlie immediately told her that it hurt. It was clear that she could feel that Charlie was backing up again. This is when, for the first time in over a year, she talked long term and laid it all out for us. As this part of the conversation started we knew we had to get Charlie out of the room so we could listen.
What she said was that it was time to move on to do the next phase of testing that we were hoping to never have to get to. Back in January she had told us that this was done for children like Charlie who are potentially left with only surgical options. This test will look to see what, if any, function there is in her colon. She stated that presently the oral laxatives are not working for Charlie and furthermore it has become psychologically damaging for her to take them (chasing her around the house, etc.) There isn't much more they can give safely and effectively. The next option and our best case scenario would be to do something called a Cecostomy. This could be done if there is a good response to medication and some function during the test. This would be done through placing a port into the top part of her colon so that we could manually flush her out and inject medication straight into the colon. If we did this there would be a possibility that one day it could be removed. If they were to determine that there is no function in the colon then they would need to do a colostomy and either remove the colon or reroute around it so that all waste products can be emptied.
It was then that our hearts dropped. Judson asked if the test would give us all of the answers and she said that it would not but it would hopefully give us clearer expectations. I think she could sense that we were "freaking out just a tad." When we asked if this was really best case scenario she said that there was still a slight possibility that the bowel could be "immature" and have not really woken up yet. It could one day, but to not get our hopes up. Even if this was the case we may still need to do the Cecostomy for the meantime until the medication can be better managed orally.
So, there we were.... We left completely panicked. The test, which requires a four day hospital stay would be scheduled and we would need to wait months to find out what we were looking at. My mom was with us so of course we told her and the rest of my family and Judson told his family. I had my book club that night and told them when they asked how everything was going and then I really didn't discuss it with anyone for weeks, with the exception of the most amazing friend that I met through a group with children who have similar issues. About three weeks later I called my boss and told him that I needed to fill him in and he couldn't have been nicer. Even then I told him that no one knew anything about it and that I wasn't ready to discuss it but that I wanted him to know so that we could plan ahead. Eventually I began telling people and now it has become easier and easier to talk about. The fear in the beginning of the unknown was so scary (still is.) So, now here we are waiting for the hospital stay which will be here before we know it!
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