Thursday, 6/30
Oh boy. One day I promise to stop writing reports that are anything less than glowing. Dinky is fine but had another "spell" today. Even if they are less severe I think each one gets harder. He was crying very hard and started to "desat" (his oxygen rate went really low) and he started turning blue so they had to give him a 100% oxygen briefly. His heart rate dropped but fortunately only for a second. So he didn't "code"...he "spelled". Within a minute he had recovered. They did an x-ray and found that his lungs were not as well inflated as they had been. This morning they had decreased his oxygen to 1-1/2 liters but after this happened they went back up to 3. I am feeling frustrated because the main thing I want is a concrete answer of why this happens and more importantly, when it will stop. I am seeking something that no one can give me. The main thing I keep hearing is this is just the nature of chronic lung disease...for now. I can't describe how scary this is. I had just gotten to the point that I could watch him cry without fearing that it would result in something like this and now that security is gone again. Our poor fella. I keep teling myself that one day these episodes have to end. They have to. Period. Hopefully we are back on track and we can go back to the good ol' days :)
On a side note...Happy birthday wishes to my dad and brother (and my friend Sue and cousin Kristen)!!