Changing Expectations

Slowly, but surely, Bill and I have been changing our expectations for the goal of this hospitalization. When we first arrived (32 days ago), we set out to get Mason through the acute rise in oxygen need, balance his electrolytes, maximize the effects of his diuretics, and ultimately get back to baseline. We did reach 1 of those goals and are hopefully on the way to reaching at least 2 of the others. However, as far as getting back to baseline, we are starting to realize this was not a realistic goal for this hospitalization. Thanks to a few conversations with the lung doctors, we realized that Mason's lungs have been injured and will take some time to heal. So, we are modifying our ultimate goal to Mason being stable with his oxygen need. That seems more realistic and allows us to think about going home sometime before 2010.

Today was a pretty low key day. Mason ended up needing about 4.25L of oxygen all day and was fairly stable. His chloride level is coming down and his other electrolytes are remaining fairly stable. The doctors are still pretty concerned about him not gaining weight, but with only 1 day with the increased calories, I'm not as worried about not gaining weight in 1 day. We are going to increase Mason's steroid just a little bit tomorrow to see if that can help decrease his "work of breathing" to allow him to be a little more relaxed and burn a few less calories by just breathing.

In the spirit of the season, I thought I'd share a few things that we are thankful for: having such loving and supportive family and friends, having flexibility in our lives that allow us to be with Mason when he needs us, having enough of an understanding of Mason's condition to know what questions to ask to "lead" the doctors to some answers, and for our little boy who shows us how to be strong, how to laugh, and how to endure!

We hope you all have a wonderful Thanksgiving and are able to share good time with family and/or friends.