the calm before the storm?

i realise this is pre-emptive worry, but i wouldn't really be me if i weren't worrying for nothing about something. so, cold and flu season is almost here. it's a real bitch by itself, but throw in a kid with a port and it becomes a raging one. so i find myself trying to enjoy the days of playing outside and sending him to the gym daycare with the other children before i find myself wrapping us all up into a plastic bubble so that we aren't living out of st. joe's this winter with small fevers that hopefully haven't turned in to port infections.

i have decided that i am going to be a bit more commanding about this, though. i spoke with kathy (a nurse from hoss) about the possibility of doing the first 48 hours of antibiotics at home while we waited for cultures to come back. for non-hemo parents, this would be the first 48 hours you are mandated to stay in the hospital at the first sign of a fever (which, i should tell you is only allowed to get to 100.5...oh yeah, and you can't leave until you are fever free for 24 hours). she said that, while it is up to the doctors in your practice, it is not unheard of to allow parents to administer these antibiotics at home while you wait for the cultures to come back. so i am going to try and strong arm the doctors to follow this plan with me. but i am going to go in ahead of time and try to sweet talk them first (are you reading this, sara!?!). i figure, if i am capable enough to stick a needle into my son's chest every other day then i am more than capable of keeping it in there (with the biopatch on) and hooking up some antibiotics every 8 hours. i would even push it slowly over 30 minutes if they were unable to lend me a machine. i would also promise not to bathe him or allow him to run around like a wild beast with a needle sticking out of his chest.

you see, it's not that i don't appreciate the doctor's perspective. i do. truly. however, something i learned last year when we were in and out of the hospital three times over two months, i realised that noah gets pushed to the side. and while he would never begrudge his brother the attention, devotion and care he needs from his parents, it definitely wears on him. he worries for his brother. he misses his mom and dad. he misses being home. and being without him for so long...not being able to show him attention and affection daily like i would if i were home is really trying. and one thing i am trying so hard to do with this disease is to keep things as normal as possible. for everyone...evan, noah, michael, and myself.

who knows, though...maybe i need to redefine normal.


Jaime said...

Oh Girl, let me know what the docs say. That would be great if you could do that stuff at home. Reece is going to a 2 day/week preschool this year so I'm sure we'll get the flu and everything else out there so I'm interested in knowing if you get a hall pass or not.

I know what you mean also about the other sibling being left out. Even though we haven't been through as many hospital stays as you guys, I regularly feel that Olivia get's the short stick out of this deal. It's just not fair!

Miryam (mama o' the matrices) said...


We had both sorts - if the docs were pretty confident that all would turn out to be well, then we'd leave the ER after a dose of a broad spectrum antibiotic, one that would last for at least 24-36 hrs. They'd call us back if the culture grew something out - and once, it did.

But if they were concerned, then we'd just stay.

Still, if the question is just about mechanics - can you do the infusion, can you get a pump, etc - then yes! After an infection, you wait in the hospital for a clean culture, and then you have to finish the course of antibiotics. Which, of course, you do at home.

With a pump. And a home care nursing service to show you how. So, yeah, they ought to be able to put that together for you. Which means that the hard part is getting the kiddo to sit still while the pump's running!

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生日 said...