If there is one thing for sure, I can say that the professionals that work here at Rose Medical Center and National Jewish are true professionals in their fields. They are concerned about my COMPLETE well being not just the aspect that is most critical at the moment. This is just another reason I know I'm in the right place. With everything that is going on, dealing with food seems like another impossible mountain to climb. Yesterday was a good day though, for the first time in ages, I actually craved something! It was rice, which is too low calorie according to my nutritionist, but nonetheless ~ I wanted it and ate it! Yay for positives ~ let's add one to the victory column!
Dr. Cosgrove tapered my solu-medrol back to 12 hour doses last night. Another victory! The basic plan was that if my system held strong, he would switch to oral steroids by Thursday and I could be released by Friday. Mom and Dad were giddy with the idea of hitting the road. They immediately began dialing numbers to spread the news when the doctor left the room. With this plan in place, I didn't get my 6:00 p.m. treatment and my family left the hospital with high hopes of heading home soon.
Overnight, I could feel my newfound "ease" to breathe was slipping away a little. I rested on my bed watching the beautiful snow fall just praying my lungs would rally. All day I knew I was a bit worse, but it was minimal enough that I was able to play it off. I'm so tired of being a disappointment to my family. They are so ready to go home. I'm trying so hard to stay positive and focused but it's so hard when I'm not the only one being impacted.
Anyhow, when Dr. Cosgrove visited today, I was very quiet. I assured him that I was okay. He agreed to taper the solu-medrol again but with a big warning. He said that he and Dr. Olson spoke today. They both believe that my health is in such a reactive and critical state that if I spiral again soon, the outcome will be much worse than this time. To top it off, he also noted that my INR labwork dropped and if an increase in the coumadin doesn't get it back on course, I'll need to go back on the Lovenox shots. Deep breath, (well, mentally anyway).
About an hour after Dr. Cosgrove left, Dad and I decided to go for a walk around the hospital to look at the snow out the windows. As I was walking, an outside door opened and the cold air snatched my breath away. We turned down a long hallway with an odd smell. It happened so quickly there was nothing I could do. I could barely breathe. I had a lost a weeks worth of progress. I was calm of course, trying not to let Dad know how bad it was, but he could tell. Dr. Cosgrove has cautiously decided to monitor me through the night on the current plan to see if I might improve without increasing the treatment again. At last check my O2 was down to 93% on room air. It's been holding strong at 97% for a week now.
I guess this is truly what you'd call baby steps in progress. I'm surprised to admit that I'm not feeling defeated right now. It's odd. Honestly, I feel a bit numb tonight. And maybe that in itself is a gift.
