We found out today that the powers that be are looking to cut us down to 12hrs a day for nursing (as opposed to our normal 16). Currently our pediatrician is refusing to sign the new order for the reduction in hours and she told me she doesn't feel that it is what's best for Mackenzie and will help us fight it, but I'm not sure how this will all play out. Now I'm up at 4am debating all the possibilities.
Mackenzie isn't stable enough to go without someone up at night. She requires suctioning every 2hrs to keep plugs at bay on top of her new central apnea issues. But at the same time, in order to take Mac to any sort of appointment (or even out to socialize, or hell even to run errands or clean) during the day, there has to be 2 people -- and Andy can't take off work for every appointment. I don't recommend putting any trached child in the backseat by him/herself, but especially not one who can't manage her secretions on her own and requires frequent suctioning. Plus because of her reflux and having such an "available" airway, she's prone to throw up and aspirate so she can't be left alone while eating (which takes 50 minutes to run through) or 30-45 minutes afterward.
So now to figure out how we would use 12hrs and what would be best for Mackenzie. I could eliminate night nursing and stay up myself, to ensure we have someone available during the day for appointments or emergencies... but then there's the constant strain on my relationship with Andy in working the "night shift" and never having a night off. We'd be on completely different schedules. Plus, on days when we're out at UNC for the entire day, I'd essentially be going 36+ hours without sleep. Or if our day nurse called out and the company couldn't find coverage, same thing.
Or I could go without a day nurse and never take Mackenzie to a single appointment. (Hah, yeah right.) Or Andy could take off work and then risk loosing his job because he's having to take off work two days a week every 2 weeks. Plus he wouldn't be getting paid for those days.
We're in a no-win situation. It always amazes me that the people who decide the amount of "help" a special needs parent can get is always someone who (1) doesn't know your child, and (2) who has never cared for a special needs kid, much less 24hrs a day, 7 days a week like parents do.
I must say that no family wants nursing -- it's a necessary evil to take care of their child and do what's best for him/her. Trust me, I don't want someone else in my home taking care of my child when for nearly 8 months that was the situation in the NICU (except I got to "visit" her - yay!). I would love to wake up tomorrow morning and know, beyond a shadow of a doubt, that all Mackenzie needs is a loving family to look over her. Unfortunately, that's not the case for us or every single family out there... and it's disappointing that the people who need the help are always the ones who have to fight tooth and nail in order to get it.
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5 comments:
Why would they cut her hours when Mac's care had not changed? That is what frustrates me. If I were you I'd use night nursing except for the days you have to go to dr. appts. When we did not have a day nurse I planned for 1 day a week I would have to get all my errands done each week. Yes, it sucked only getting out of the house once a week but it was all I could do when I did not have any nurses I trusted keeping her during the day. Could you even split the 12 and do 4 hours of day and 8 hours of night nursing? I know it would be hard to find nurses willing to work those small shifts. Maybe your dr. will fight for you and you can keep them. Now that I have day nursing not sure how I ever went without.
Lacy - Because someone sitting behind a desk thinks I don't need the hours. Sad, isn't it? I'm not entirely sure what we're going to do just yet... I'm really banking on the pedi putting up a good fight and us not having our hours reduced. Apparently it's the new wave in our county, though, and they're looking to decrease everyone to 12hrs and under. Boo!
I know you said it wouldn't be possible for your family to help, because of the freak out, and I don't have a trached kid, so forgive me I don't know all the details. But would it be possible for them to help out in other ways during the day? Like driving places, helping with the shopping, etc. Things that don't directly have to do with Mac's care?
But I hate insurance companies. We just found out that they won't cover anymore immunizations for our baby (and stopped after his 2 month shots so we owe his doc lots of money that we don't have because we are paying for health insurance!). Hopefully it will all work out.
Niff - It sucks! We have 16 hours approved, but I don't like having nurses here at night so I use 1-12 hr shift from 6am-6pm. This also limits the number of people here in a single day because with all the therapy appointments it does add up quickly! When the nurses come @ 6am i catch about 2 hours of GOOD sleep. While I am the night nurse from 6pm-6am I do not literally STAY up all night. That would be impossible. I sleep in the same room as Austin so I can catch every toss, turn and sneeze. I am a single parent so no one worries about being left out. It is not for everyone, BUT that's how we roll here. There is just absolutely NO WAY we could get to any appointments any other way. On the days when we have no appointments I plan my other errands or lunch with friends. Like I said it sucks! But it is doable - IF YOU HAD TO. ((HUGS)) I hope you get to keep your hours.
Arg... what I wouldn't give to live closer. I know you want ME all up in your business lol I love ya and I'm always here virtually if ya need me my friend!
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