Two of Tom's brothers are up for the weekend (hi, Dan! hi, Richard!) and I got up too damn early (bad kitty), so I'm going to try to make this quick. Quick-ish.
So. So, we had the first trach conversation today. Gah. It went well, really. I only cried once! Barring some entirely unexpected discovery of a blockage in her lungs that proves to be causing her bleb troubles AND a sudden dramatic improvement in Jane's progress, we are definitely trach-bound. Dr. Congenial said it's inevitable. Damn.
The ENT doc who performs these things was wonderful. He talked me through the procedure, explained the pros and cons, blah blah blah. Very calming, very easy to understand, and happy to call Tom and talk to him over the weekend. Can you beat it?
It's possible Jane may only need the trach for a month or two. It's possible. It's also possible she may be trached for many many months. The important thing is that Jane's head and mouth will be unencumbered for pretty much the first time in her life. She'll be able to move her head at will. She'll be able to play with her mouth. She'll be able to EAT. She may even be able to breastfeed. I'll finally see her face. So. Yeah. I guess I'm coming around.
In entirely less weighty news, Jane's been having some intense diaper rash. They've been unable to collect any samples, so they decided to try to have her poop in some kind of container. I suggested they put it in the Boppy. Behold: preemie potty!
She put up with it really well, the good girl. Right up until...
And it worked! Hopefully by the beginning of next week they'll have a sense of what's been giving her bum such a rough time.
After all that she was due a little snoogle. Spent some quality time with her pacifier and practiced sucking on her tubes. Simultaneously:
And then was out like a light for the rest of the afternoon.
Huh. So, not quick at all. I just can't cheat you people.
2 comments:
Well, I am grateful you can't make it quick!! :) And you answered one of my questions - about breastfeeding if she has the trach. So, some good news about that ... good is relative, but still good!
It sounds like the ENT doc is going to be a nice addition to the team. I'm grateful for that as well.
Enjoy your family visit, and those pictures of her are simply WONDERFUL! She is entirely precious!
Cindy
The trach talk was hard for me to hear. But it should be an ENT that does it. So being able to trust him/her is huge.
Without knowing exactly all of Jane's issues, it can lead to a number of POSITIVE things. When Maryn had hers, we could see a difference in her breathing that very day. She was able to come off the vent 4 days later. The RTs were wonderful in helping me learn how to care for it all. She was able to try her first bottle about a week later. And low-and-behold, she COULD feed by mouth. I know it doesn't always work out, but it is a possibility. If you every have questions, please don't hesitate to ask.
Tasha (Margot's friend)
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