Well, here we are again. We had the most awesome day at the Pumpkin Patch on Tuesday, then Tuesday night Jordan retched on me & I knew we were headed to the hospital. I kept in contact with her pediatrician all day on Wednesday, and we finally decided on a direct admit to the floor at 6:00pm on Wednesday evening. She was wayyyyyy dehydrated & snotty: classic Jordan cold. At the hospital we started her on IV fluids, and we are slowly working back up to full strength feeds over a couple of days while the cold passes -- this is run-of-the-mill for us now :-( . She had no fever or infection, which I knew (in a mom-of-Jordan sort of way). The attending on the floor asked
me if we should do a chest x-ray and I said "no, she doesn't have an infection, especially not pneumonia, I'd be shocked if her labs show and infection at all." An hour later her labs came back to confirm that. I guess I really am getting to "know" her & her illnesses! She's picking up speed, holding down her half-strength food, and will probably be ready to leave in a day or 2.
On a good "have-to-be-in-the-hospital-anyway" note, I summoned the in-house dietician to go through regular dietician's analysis & comments from a couple of weeks ago. Our regular dietician says that Jordan is super-deficient in a huge number of vitamins and minerals, which seemed a bit strange to me because she eats and unbelievably balanced diet each day: Fresh & frozen meats, fruits, veggies, grains, oils, salt, cultured yogurt, etc. (all blended up together, obviously),
and takes a pediatrician-prescribed multi-vitamin. The in-house dietician was also concerned that the analysis was off, so she is going to do some investigating and help me work through it. This is a huge relief to get some help with. I have to wonder, though, if Jordan really is deficient in all these things, what about the rest of us!! We should all have our mouths wired shut & g-tubes placed for optimum nutrition!
As for in-home nursing care, we are
still battling, slowly, for services for Jordan. So far she has managed to get a Medicaid coupon & a DDD waiver (our first case manager told us she'd
never qualify, HA!). They have approved 28 hours of respite care per month for her (although no personal care, but I think that's because she's too young). And now we are
waiting, waiting, waiting to hear back from the Medically Intensive Program, and it's making me crazy! This is the program she needs to get in-home nursing care (8-16 hours per day, if she qualifies). Funny thing -- 2 different people at DDD have now told me she would have 16 hours per day already (actually, long ago) IF WE DIDN'T HAVE ANY PRIVATE INSURANCE!!! ! Apparently, rumor has it, that they are denying coverage for anyone with private insurance, because insurance can just pay for those people to be in the hospital all the time, and if insurance doesn't want that, they can "volunteer" to give more in-home nursing hours. Mind you, this isn't POLICY, this is just what the people in charge are doing to save their budgets, and this is
just a rumor. I still haven't been able to talk to the director of this program directly, but for now they aren't processing Jordan's application until they are convinced that the insurance company won't pony-up extra in-home nursing care hours. I guess that's one way to
never decide on her case. They can argue that all they want, but if they don't decide soon one way or the other I'm calling my congressman
again -- and I
will appeal if they deny her benefits. Everyone knows that the Medically Intensive Program is
secondary to private insurance,
not instead of private insurance.
And, to top it off, our nursing agency has
no nurses to staff us. We still have three 8-hour visits available through our insurance (in 2007), but there are no nurses to work those shifts. Uggghhhhhh!! !
Now the rest of us: Devon is in Edmonton working until Sunday night, so his parents came down to help out. Of course, by Thursday morning Avery was sick, too. She coughed until she puked on Thursday morning (starting at 4:30am), and had to miss pre-school & swimming because of it. She's doing better today -- typical cold for Avery. Just what Earl & Linda were hoping for; sick grandkids everywhere. But thank goodness grandpa Earl, grandma Linda, and nana Noma were all around to helpt out -- they've been a huge lifesaver to me during this crazy time.
Then I came down with the cold on Thursday evening. It's not a terrible one, but my nose & ears are plugged up, which was painful on the flight to Spokane & back on Thursday. I flew over to take my dad to a doctor appointment with a new doctor. I don't really know how to help him get better, so I'm calling on my recently fine-tuned "talents" of making & going to doctor appointments. We're just trying to get him "stabilized" a bit, so that he can get a little stronger and feel a little better, and hit this cancer thing running. The mini-strokes and the heart attack he had in September have set him back a bit, and the doctors and hospitals have aggravated his life-long claustrophibia, causing anxiety & panic attacks.
Anyway, at the doctor's office we tried to switch around some of his medications to see if we could make him less "confused," but it backfired, and he had a horrible night. Kay & Jon Paul with up with him for most of it. Fortunately today he was doing much better, and after I talked to the doctor he said to go back to the old medications because at least then he wasn't panicking & anxious in his own home. So much for that.
So the next order of business is to get his medications analyzed by the pharmacy to make sure there aren't any bad interactions. Then he needs to identify one doctor to be the "team leader," and make sure the others are all working together for a common goal. Hopefully his GP can fill this roll adequately, and the new doctor is going to contact the others and get them working together, too. And if they don't we will find new doctors that
will work together. I can always find more doctors and schedule more appointments.
I don't know much about illnesses, I guess, but boy do I know about doctors, appointments, & doctor team work! Fortunately & unfortunately.
Too Scary!
Kangaroo Kate & Kate's Fairy Godmother Avery
Avery as "Kate's Fairy Godmother" 
Avery designed, Leslie carved
Our pumpkins: Avery's Scary face, Leslie's bat, castle, & witch's brew
