Disappointment

We had a disappointing day--well actually more like a disappointing couple of weeks. It seems like we can't get ahead, ever. I took Maggie into the hospital today to get her counts checked because she has been having such huge quantities of diarrhea. After getting her finger poked, we waited 45 minutes in the waiting room for the results. The results showed a potassium of 3.6 (fairly good) and a carbon dioxide level of 15.6 (not so good). All of her other hydration numbers looked good but that one. Thus, Maggie had to be accessed and given a bolus of fluids to help bring up the bi-carb number. She was then given another supplement to take orally to try to help maintain her bi-carb.

Some other pieces came out of this visit. I called Cincinnati once again and requested that we be taken off of the enzymes. They don't seem to be helping and if anything they have made her diarrhea worse. Dr. Mezoff then changed Maggie's appointment to an earlier time next week. I'm hoping this indicates his (and our) sense of urgency for the situation.

We are tired of this. All week Maggie has gone to bed only to wake up less than an hour later to diarrhea. The diarrhea than lasts for the next 3+ hours making our nights end around 1:00 am or later. We don't have a moment to ourselves. We are cleaning up poo half the night and all day. It is just getting so very tiring and old. I had great plans to go my parents next week and visit with friends and all of this has been cancelled. Maintenance is supposed to be easier, but it is just as hard, if not harder.

We need an answer, we need a treatment and we need it fast. We cannot continue living like this and watch our child suffer. Please, pray for Maggie.