Tuesday, June 08, 2010

A Day At Children’s

June 8th 8:30AM to 4:00PM

Oh, my what a day! A long, long day… with no new information! I could just SCREAM!!! I am slowly starting to get more and more frustrated. We all want answers, we all want what it best for Kathryn, No one seems to know the best way to accomplish any of it. To me it seems like a big guessing game and my baby girl is the guinea pig.

That said, I am trying to stay positive and I don’t want to sound ungrateful, or that I am in denial, or that I am negative. What we are facing is surreal. No parent should have to make these kind of decisions and no baby should be faced with what Kathryn is being faced with. Her future regardless of what decision, makes my heart hurt.

Today we had planned to meet with Nutrition, EKG, Transplant, and GI. Well that schedule seemed backwards to me since I felt we needed a plan to be devised with the team, before Nutrition or GI could be of any help to us. So we went to nutrition and she agreed, so we planned to remeet with her after transplant, during GI. That sounded great, but the logistics of that are a nightmare. Because, of course Transplant took longer than the 30 minutes we had before we needed to be at the GI appointment. We went in circles with transplant trying to figure out the plan. ( i.e., g tube, transplant status, meds etc, etc.) So the "plan” if you can call it one was that we didn’t have enough information and that Mike and I needed to meet with GI and then coming back to see Dr. Blume.

As it turned out GI could not fit us in to her afternoon…so the bottom line is TODAY WAS A WASTE OF TIME!! We could have spent it at the playground…instead of the hospital. I wonder how many of these days we have in our future. I hope not too many because these kind of days are emotionally and physically draining.

We should have a new appointment set up tomorrow! I will keep you posted.


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