"Hi, my name is Jane, and I'm a paci addict."
Seriously. The girl can NOT be separated from her pacifier. And god help you if you take away her mirror before she's good and ready. Awesome Nurse Kristy tried to warn Other Nurse Donna about it during the shift change last night. Donna apparently was all, "Yes, sure, okay, whatevs." Next morning? "Whoa, you weren't kidding." You take either of those two things away and it's instant (albeit silent) howling protest.
Still no changes to her ventilator, still doing well with her oxygen needs (mostly in the 40s when Awesome Nurse Angela isn't on -- I think Angela takes it personally when Jane's oxygen needs get over 50%; it's become her mission in life to get her to room air, and she's getting close).
After all of our work to get the doctors to respect Jane's need for slow change, I'm getting mighty antsy about the fact that she's just been sitting here for a week. I mean, could they be doing something to get her off the vent without needing to go for the trach? Are we missing an opportunity? I just hate that she's vent-dependent. I hate that they're going to have to cut a hole into her. I hate all the uncertainty around this. I feel like I'm going to barf whenever I think about it for more than twenty seconds. Or maybe that's just Sarah's leftover cheapo mac n cheese talking.
Anyway, if anyone has any definitive answers, I'm in the market.
4 comments:
What I know is that you have handled everything with Grace and that I don't know that anyone would be doing cartwheels about a trach. I also know from others recent experiences that it was the right thing and ultimately led to greater healing of lungs and less vent dependency. She is growing and thriving and all the decisions that have been made to this point are what got ya here. I think that now is most important to stay with Cindy's day at a time, continued pleasing of the God's, dancing and chanting. Throw up if ya need to cause that cheap mac n cheese ain't worth the fight to keep down scream cry and do your fair share of protesting to the universe why the hell your family. Then walk forward to doing what ever gets Jane H so that snoogles aren't limited and she and Sarah can share the joy of your loving home. You can also throw a brick at me and tell me I am full of shit and don't get it...and that too would be ok! Always praying and sending healing vibes that this road evens out and at some point gets easier to embrace.
Y'know, Tia, I think it makes a lot of sense to be feeling the paradoxes of "yeah whatever it takes" and "this makes me wanna throw up."
I mean, no one is going to go through this particular part of the journey and be able to say with aplomb "sure, sure, sure" and mean it!
This is flesh of your flesh after all, and we moms know that cuts into our children are deeply felt in our own bodies. Heck, as a mom *I'm* feeling some of this pain and I've never met you or Jane in real life! So, I can only imagine the sharpness of the feelings that you are dealing with.
Don't try to remove one feeling or the other. Know that the paradox, the charge of dissonance, the inability to reconcile them, is part of the process. Just let them be.
It doesn't mean you have to LIKE them. But you can stop fighting them. This gives you more energy. And, oddly enough, it doesn't increase the bad.
I think we're all socialized to think that if I accept "the idea of trach" then that's just the beginning of a long line of terrible things to come. My experience as a mom is more like when I accept the one thing in front of me there are a whole lot of new OTHER options that then open up. The road ahead is not just one straight and narrow road to perdition!
Now, let me say that I raised three paci-addicted girls! Someone (and I won't name Joe's mother because she has passed on) decided that they all needed to be weaned from them ... and my girls, addicts that the are, all used a thumb - that NO ONE could take away!!
Personally, I loved the paci stage. We used Mams and they came in all kinds of colors and patterns, and I matched them to their outfits.
My oldest, Molly, would go to sleep with one in her mouth and three in each hand!! She's FINE!
About to graduate from college, God willing!
Keep up the wonderful work and know that you're all much loved. Antsy-ness seems normal to me, and you're pretty darn inspirational for the way you've been handling things!
Sending you hugs, and love and prayers.
Cindy
Thanks, guys. I appreciate the thoughtful feedback and support. I try to roll with what's thrown at us, but the thought of our girl being cut into... well, you know how I feel about that. I can handle a lot, but the one thing (so far) I've had trouble watching is when they cut her heel to draw blood. I hate it. It's barbaric. There's something about seeing your child bleed that triggers an immediate, visceral rejection. That's part of why having to go this route is so tough.
Sarah, by the way, is a DEDICATED thumb-sucker. I'm hoping Jane will transition to the thumb at some point. But the thought of your Molly falling asleep with SEVEN pacis is just hilarious, Cindy. I hope you got a photo of that.
Oh I do!
And, Tia, if I may share another story. When my youngest was born she came back as a positive for PKU. (Mandatory baby testing for 7 rare diseases...)
So, we had to go through this enormous shift in care, from breast to powdered crap. And go from protein to no protein (think NO to Cheerios and YES to Fruit Loops).
It was crazy. And every week, I had to take my baby, lay her on her back and cut her heel to squeeze blood onto a card. I had to take her to the far reaches of the house because she cried, I cried and when Molly and Anna heard it they went nuts too. It was dreadful. One time at the hospital they had to give her an IV into her jugular and they said "Mom, you should leave for this" and I was "no way" ... they may have been right. (End of PKU story, turns out it passed and she went back to normal eating at one year ... but not after NO ONE would eat anything but the pink and green sugar coated 'cheerios' ... oh well).
Yeah, I get that thing about the cutting into your baby. And I'm with you on it 100%. Of course you'll do what you have to do. But I don't think it would EVER "seem" okay in the abstract beforehand.
Barbaric. Not a word any of us want to use when referring to "things they do to my kid."
Hugs.
Cindy
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