We just got done with 2.5 hours worth of appointments.
The doctor thinks the Castile soap we are using for washouts is causing Greysen to vomit. This is good news and bad news. The good news is that we can maybe stop the vomiting. The bad news is we have to go back to using Gylcerin which I refer to as liquid gold because it's extremely expensive and isn't covered under insurance. Unfortunate but neccesary.
The second problem is that despite several washouts per day (and for those wondering, washouts are enemas but I really just hate that word. Can you blame me?) Greysens bowels are not getting clean. The x-ray this morning showed he still had a lot of stool in there and we need this completely cleaned out so that the doctors can help start managing his accidents. It would be best if he could be completely cleaned out by today since we only have tomorrow and Wednesday left with the doctors.
Another problem is Greysen's appetite. It has decreased significantly over the last few months and has pretty much gone to nothing since we got here. He hasn't eaten breakfast or lunch today and says he can't eat:( I don't know if it's because of the washouts and vomiting but I'm hoping it gets better...soon!
Despite the washouts Greysen is still having accidents. Not quite as bad as before but the goal is to stop all accidents. If we can get him cleaned out then the doctors can figure out what is causing the accidents and how to better treat them. It's all a trial and error process but being completely empty would eliminate some questions.
We met with Grey's surgeon on Friday and the great news is that he doesn't think Greysen has a stricture! That was our main concern. Praise God! He talked with us about our treatment plan and recommended we do the bowel management program for 10 months. This means a washout once a day for the next 10 months. I'm sure it will become normal for us but it will be an adjustment. It's about an hour process and has to be done at the same time every night. Next June we will come back and discuss his progress and they may give him Botox injections then if he is still having issues. In the meantime I am just going to be praying this works!
So that's all I have for you right now. We appreciate all your prayers and I hope this update gives you an idea of what to be praying for! Right now we are enjoying our time together in Denver but I am really missing Kyle, the kids, our new home and church family! If you feel up to it leave me a comment so I know who is reading and praying! Your support means the world to us!
