Monday, September 21, 2009


Totally respecting those who live in states where nursing is extremely limited. This is HARD! I've missed 2 med doses so far. One was klonipin on saturday...just completely forgot! So I had all the meds drawn up for yesterday and had them out on the counter so I wouldn't forget. Then I went to bed and didn't hear my alarm go off for her 2 am meds....woke up at 3:30 am with my phone in my hand and the alarm shut off. Decided to skip the klonipin and just do oxycodone and baclofen at that point. Woke up at 6:30 am and realized I grabbed the wrong syringe and I gave her klonipin instead of baclofen. *hits forehead* So I compromised and just gave her half the klonipin dose at 7.

She's having a rough day today. Secretions just pouring out her nose and mouth. Soaked her pillow, hair, clothes, and 4 prefolds by 11am. Gave her oxycodone at 11:30am....still struggling. Gave her fentynol....still struggling. Finally broke down and knocked her out with clonidine. I hate doing that but she needs to rest and BREATHE!

Managed to get some laundry done and I have banana bread baking in the oven. Not too bad. I wanted to get a little grocery shopping done today but I highly doubt that will happen now. Still haven't showered and I'm in my pj's. I'd much rather spend her naptime surfing the web than showering. *blushes*

I missed breakfast but managed to toss together a halfway decent lunch. Tuna sandwich, veggies, chips and diet dr. pepper. exactly do people function normally with no nurse? Seriously, I was just reading that some people only get ANY nursing if their kid is vent-dependant. Glad I live in Ohio right now. Sheesh. Now just counting down the days until her nurse gets back....


sarah said...

I can only imagine how hard it is. I do have a suggestion for you though...go to walmart and buy an old fashioned alarm with a bell--the kind you have to wind up every night. I am the type of person that has to be in the right place in my sleep cycle to hear hubby's alarm in the morning...otherwise I tune it out. Since I have to get my 8th grader up I got my own alarm. I put it on top of the dryer and I have yet to sleep through it. My nerves are jangled for a while.

you are right...we are so lucky to be in Ohio. Other places you might be forced to put her in a home to have nursing care.

you are doing such a great job. Just think...when you get your nurse back from vacation, your normal day to day stuff is going to feel like a vacation :)

swgoats said...

Yeah, you get dependent on the help. Joe isn't on so many meds, but last week I missed a dose cause I got so used to the respite worker giving the meds. We're doing HBOT right now, and it seems like it is reducing his seizures. That was more than I had hoped for. Hang in there!