Sunday's Story

Friday was a real setback. Its like we lost a week of Matthew's recovery. The consensus (at least among most people) is that he was dehydrated and then got too much fluid too fast and his body could not keep up with the change. He is doing fine today, resting under the sedation and allowing the breathing tube to do the work so that his heart can recover (again). There are still those in the PICU that believe the leakage in the Mitra valve is the problem but there is no evidence in the echos to support them. There is evidence that he was dehydrated (increased heart rate, lots of diarrhea, and poor urine output). So, we will go through the entire weening process for a third time but this time I will not be so easily convinced when my gut tells me there is something wrong. I had brought up the possibility of dehydration but no one seemed to think there was anything that they needed to do until it was too late. Then they threw too much at him all at once and he needed the support of the meds and the breathing tube again.

The bottom line is that he is resting today and will rest Monday with no real changes. The cardiac team meets Tuesday mornings and he will be one of the topics of discussion. Mike and I also brought up a second opinion consult with someone in Boston. We will follow up on that after their meeting on Tuesday.

Please don't infer from my posts from today or Friday that I am unsatisfied with the care he is receiving at CCMC. I think they are all very good at what they do but unfortunately there are many cooks in the kitchen and its hard to have continuity of care, especially when the PICU is overfull. I know they all have Matthew's best interest at heart. Of course, my hope is that Matthew leaves as soon as possible with a healthy body and that we never have to return!

Thanks for the continued prayers. The support has been wonderful. Grandpa Huhn is returning home to Florida on Tuesday after being here for a month but Grandma Huhn has agreed to stay till Matthew comes home. I don't know what we would have done without them.

Lori