Saturday, November 14, 2009

Down and Out

OK, so apparently there are too many acronyms in my life. Today was not an EGD for Anna, it was an Upper GI. I am sleep deprived and can't keep it straight anymore. The results were sort of what I had expected but then also not what I expected. The upper GI consists of giving the kid barium (Anna's went through her button so that was easy) and watching it under flouroscopy which is kind of like a constant xray. When the radiologist first turned the flouro on she was asking when the last time Anna ate was. I told her it was around midnight. Apparently Anna still had food in her stomach from dinner last night. The barium cleared easily but it appears she is not digesting food appropriately. I expected that since the ralph sessions always included the previous night's cuisine. The next finding was odd. If you will recall Anna had a pH probe done not too long ago. It did not really show any reflux and it is the definitive test for reflux. She did have some esophagitis which meant she has a little reflux but it did not appear to be that severe. Anyway, when the tech pushed the barium in it shot all the way up her esophagus into her mouth and stayed there in the esophagus for the remainder of the test. So, the minor reflux turns out to be major reflux. Anna is already on Prevacid so that should actually stop the reflux but obviously is not working. I found this news upsetting because if we had known she had reflux we likely would have gone ahead and had the Nissen fundoplication done while having the g button placed because the 2 are usually done together. Since the pH probe did not show any reflux nobody thought she needed the Nissen. Now she will probably need the Nissen but will have to have yet another surgery. I feel horrible for Anna and it is stressing me out. This has not been a good day for me. I am frustrated and feeling hopeless but I know that all stems from my exhaustion. I am averaging 3-4 hours of sleep a night and working full time. I feel like I do not know how much longer I can go on like this but also know there is no choice. I had really put all of my faith in the G button that it was going to be the answer to the sleep problems. Now that things are not any better I just do not know where to go from here. It isn't that the button won't be the solution long term but we have to get all of the kinks worked out first and I just don't know how long that will take. She is tolerating 30 ml every 4 hours but that comes out to about 4.5 oz every night which is not enough to make a difference. Most days I feel like this CP is tolerable and doable but today I am reminded that how things are today is probably how they will always be. There will likely always be something medically going on with Anna and there will be few times when we can truly just sit back and relax. The truth is that there will always be Dr.s appointments and this and that. Today I hate this terrible palsy. Sometimes I can deal with it. Today- not so much. I had a breakdown earlier today and luckily Christy came and took the kids so Kenneth and I could get out for a bit and I could calm down and get myself back together. I hate when I breakdown. Again I thank God that he placed Christy in our lives. I think I hear a pause in Kenneth's snoring so I best try to go lay back down and go back to sleep. Wish me luck...


  1. You are at the exact same place we are. We are looking at a Nissen, already having had the g-tube for a while now.

    We are scheduled for an Upper GI on the 30th. But Parker's last ph probe showed no reflux, yet we SEE him reflux all the time.

    So very frustrating.

  2. Thinking of you and sending a multitude of lucky wishes your way. Take care.