I am more overwhelmed and frustrated today than I was yesterday and than I was the day before. We discuss so many things at these appointments that I have to makes lists to make sure I get things done. If I do not write things down then I forget or get things mixed up. Not because I cannot comprehend things but because I have PLENTY on my plate as it is and anything extra just cannot fit in my brain. We had discussed talking to Dr. Levitt (colorectal) because Alam seems to think that Ky’s bladder issues could still be related to constipation. Every time we are there he screams enemas. If I hear the word enema again I might SCREAM! And I am not even OPPOSED to them. I just think its crazy that my child who had an excellent chance at bowel control is now being sentenced to enemas. I want to know HOW did we get to this point. I guess really the only person who can tell us that is Levitt. So I did as Alam asked and emailed Levitt. He totally threw me a monkey wrench and said that he feels STRONGLY that Ky needs a Nissen. That was definitely not on my list of possible resolutions. We had discussed this with Joe and decided that we did not want to jump into it or any other surgery for a long while.

I tried to email Dr. Alam (Urologist) to get some things established for the pharmacy and clear up some things for my own knowledge because our appointment was cut short and truthfully I am just pretty upset about the whole thing. The were a plethora of other things during our appointment that kind of irritated me like Ky’s results from her studies were not in the chart. I understand that I expect a lot of our medical professionals but I also know that it can be done. My daughter’s BODY expects a lot of me and of her doctors and I cannot change that. But I do not think it is too much to ask to make sure that you have reviewed our case before you come in the room and then to follow up and make sure we are all squared away before we leave. We managed to leave without any caths and he wants that changed ASAP… god knows how long it will take the medical supply company to get the new ones here. Its like DAMMIT I have my process and he interrupted that by leaving early.

We have had 4 poops already today … and she has been gagging all day. I turned her rate down to 40 / hr (from 75) to hopefully keep her from puking and that has seemed to work. She nearly pulled her g-tube out AGAIN. I think maybe its time for a new size or something because it seems to be slipping out really easily in the past week.

Wow… re-reading this post it is just all over the place. I guess that is in keeping with how I feel right now… lost and all over the place. This truly sucks. It sucks worse than I thought it would with her being almost two. It sucks that its not OVER… and I am having to come to terms with the fact that it never will be. It sucks that I KNOW there are more surgeries in her future even though we thought she would be done after the TC. Right now life just SUCKS and I am pissed off… and tired. Really… really tired.

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