We have an evening visit planned for tonight but I have an early Ryan update because I just spoke to his doctor on the phone. They are starting the steroids today. He needs them. Now. His ventilation settings have not improved - they've gotten higher, his CO2 is still too high, and his oxygen requirement is still too high. I take comfort in knowing that he weighed over 1000g (yahoo!) - (that's 2.2 lbs and THAT is 1 kg!) as of this morning because the main side effect of the steroids is that they will pause his growth. The doctor said that his weight wasn't a factor in deciding to start the treatment today - his lungs are in need regardless of whether he weighed 800 g. I HOPE HOPE HOPE they work. Tomorrow at our meeting, there is still lots to discuss - his duct, his brain, and of course, the lungs. I'm glad I spoke with the doctor early so that I'm not speculating bad news and more scary things. I explained to her how I handle hearing new news (I usually cry when new (bad/scary) news is presented). I told her that yes, I cry - then I wipe my tears and work on processing the information - bad news brings me down for a time, but it doesn't break me... yet. I felt like I had to tell them because I know they're keeping tabs on me as well as Ryan, and I want them to understand how I am processing all of this new info. She appreciated the explanation... or so she said anyways.
I've also been trying to re-focus my worries and gain some perspective. I've often said, "I wish he could just get a break." but perhaps his 'break' is making it this far. Yes, he has all these issues, and his are more serious that anyone would like them to be, but he's fighting. People have been through much harder struggles than this, and even though I get sad that I can't hold or touch him, at least I get to look at him.... some people don't even get that chance if they have babies early. It's easy to lose perspective on that when I'm in the 'feeling sorry for myself' moments.
On a lighter note, we had a nice morning play date with good friends, it was nice to feel somewhat 'normal' even if it was just for a little while. Again, mom was to the rescue and did our grocery shop, helped with lunch, now has Sadie for the afternoon and evening... THANK YOU. Man, my IOU list is getting really long!
Fingers crossed for a peaceful visit with our boy tonight.
Hey Kerri - I'm glad that the doctors seem so on top of Ryan's care. And 2.2 lbs?! Wowie!! He's a tank :-) Grow baby grow!!
ReplyDeleteDon't worry about crying - I think it is good that you explained it to the doctor so she knows not to tippy toe around you for fear of you cracking. You are tough (where do you think Ryan got his fight from?!) but you are still a girl and you know what? Girls cry!!
My fingers are perpetually crossed. Hope tonight is a good visit.