Neighborly day in this Beautywood

So the thought occurred to me the other day that if the suction machine broke, what in the world would we do? We haven't had any issues with it so far (knock wood) but if it suddenly broke, and there is Leah, freshly awoken, with early morning thick mucous and no suction machine - we'd be screwed. So I called the medical supply company to ask if there's any kind of back up device available to us. Here's how the conversation went:

(MSCR = Medical Supply Company Rep)

Me: Yeah, so; not that we've had any problems with it, but I was wondering if the suction machine were to break; is there any back up suction machine we could have on hand, or even just a small disposable battery run device?

MSCR: Well if it started acting up or broke, you'd call us and someone would either walk you through how to try to fix it, or we'd have someone deliver a new one right away.

Me: Yeah, but, if it's an emergency what would we do?

MSCR: Well you'd call ... and we'd try to fix it over the phone ... and then if we couldn't fix it we'd have a tech bring a new one out.

So yeah, basically the answer to my question is: no, there is no back up device available. Furthermore, in an emergency we're expected to call in (and be able to hear someone over Leah coughing) and calmly troubleshoot a suction machine while my daughter is freaking out trying to clear mucous from a 3.5mm tube in her troat herself. Yeah. And I find it hard to believe that I am the first mother of a trached child to call and ask about this so I'm not quite sure why the Rep was so unsure of why I was asking about this.

So I went online and just ordered an extra one so I can sleep soundly.  It'll be here in a few days.

In other news, our new every other weekend nurse quit. Well, she didn't quit the agency but she can't do our 11-7am every other weekend shift here because it conflicts with her school schedule. Apparently she missed a Monday morning exam the last time she was here and wasn't allowed to make it up and so she's not going to be coming out anymore. And this was supposed to be her weekend so we may be without a nurse since I don't know that a new one can be found, interviewed and scheduled on such short notice. Also, our regular nurse Ann will be out of town on vacation tonight and tomorrow night. She told us about it with plenty of time to prepare, since Jeff and I always figured that if Ann needed to call out in an emergency, we would just sleep in shifts to ensure someone is always up with Leah - as opposed to finding a sub nurse who wouldn't know anything about Leah's EB and who might unintentionally hurt her. (For instance, the new nurse that quit gave Leah a blister on her chest by taking off her leads the first morning she was here.  Why she even took the lead off is unknown but she either pulled too hard, too fast, or .... and I really hope this isn't what she did but it's Jeffs hypothesis: she used her fingernail to start lifting an edge of the Mepitac tape to take the lead off.  We told her to leave the tape and leads on for the next night but that's what I mean by someone unintentionally hurting her.  There's about a million and 1 things trained nurses could do to a 'regular' baby that they just can't do to Leah.  It's impossible to recite every single rule, do and don't.  The thing with the leads and tape is something I wouldn't even have thought of - so how in the world could I tell someone ahead of time: Don't do that.) 

But anyway, that's what we were planning to do these next 2 days (sleep in shifts and stay up with Leah) but now 2 days may turn into 4! 

Ann definitely deserves a break so I'm really happy she can get away on a vacation. She told me this morning that she hasn't been on a vacation in 8 years!! So I hope she has fun and enjoys her time off - but we will sure be glad to see her on Monday night when she's back!

Well Leah just got up and so I'll need to get a bottle ready in a minute.  I try to sing 'new' things to her everyday so while I was just getting her out of her Pack N Play and changing her, the Mister Rogers Neighborhood theme song popped into my head so here's how Leah started her day, and what'll be stuck in my head for the rest of the day: