Wednesday, August 23, 2006

Another school year... another migraine

So.... the school year begins and the fun starts... or not.

To start off with, Jessica's bus schedule is all messed up. She is supposed to have a pick-up time of 10:15am and come home at 1:30pm on Monday and Thursday. Last week there was a bus at our house at 7:10 every single morning. Come to find out the person in charge of the scheduling, George, died during the summer - not sure how and of course I'm sorry for the loss... but there's more to the story... Transportation got a new computer system during the summer so all of George's files, schedules, etc. are gone. Kaput.... as if George took everything with him. So now the new guy needs Jessica's emergency plan, copy of her DNR, schedule from the school (can't take my word for it) all before they can send a bus for her. Of course it needs to be air conditioned and wheelchair capable. Fun.

I called the medical supply company on Thursday of last week and requested that they deliver the usual oxygen supplies to Jessica's high school. Of course I told them the list (oxygen concentrator, two 25ft tubing, two sivel connectors, 3 humidifier jars, 3 pediatric nasal canula, 2 E tanks with a cart and regulator). I was told it would be delivered the next day. Monday comes around and I take Jess to school (see reference above about no bus) and come to find out... no oxygen either! I brought extra E tanks for Jess and make sure she had enough for the 3 hours. I picked up the paperwork for her meds and now I need to remember to fill them out and get it back to the nurse's office on Thursday. I was so busy running kids around yesterday that I didn't get a chance to call the medical supply company so I did that today. They couldn't tell me why it wasn't delivered on Friday - or Monday - or today... but promised it would all be there tomorrow. The guy I talked to in dispatch talked to me as if I were an idoit - started to describe to ME what an E-tank was... I told him I know what an E tank was... I wanted to know how many they were delivering and how many hum jars and peds nasal canula. ha. They had forgotten about the two 25ft tubing... Jess sure wouldn't get far on a 7ft nasal canula. gee... (she parks her wheelchair and walks around in the classroom).

Jessica's pediatrician is retiring so we recently had to get a new primary care doctor. Dr Curtiss has been Jessica's PCP for many years and we hate to see him go... of course he deserves to retire... anyone would after being Jessica's doctor for all these years. haha... Anyway, Dr. Curtiss helped us find an internist since Jess is now 18yrs old. We saw her a couple of weeks ago and she seems pretty good.... only when I left a note for her to write a script for morphine she wrote it for 2.5mls - 5mls twice daily... when it should have been 2.5mls - 5mls every 2 hours as needed... so we had to have it rewritten so the insurance company would cover the 600mls Jess needs every month. It's taken us from Fri until today to get it taken care of. Good thing I expected it to take awhile and I made sure we had plenty of morphine left when I requested the script.

Jessica's case manager called me today and told me that she is moving to Florida and we will get a new manager starting Monday. Oh, I really hate to see her leave... she has been one of the best case managers that Jessica has ever had... and considering we are talking about 18 years worth of them, we've seen quite a few come and go. Keep your fingers crossed that the new one is good too!

Also, PHS is trying to deny mental health coverage for Jess since she just turned 18 yrs old. Excuse me? We have an 18 yr old with all the hormones but the mental capabilities of an 8 yr old who knows that she is getting sicker. She knows she could die and she realizes that she is missing out on a lot of things the other kids her "age" are doing. I am up with her until 2:30 - 6:30 AM at least 3 times a week because she is stressed out and can't sleep... sometimes crying and even trying to hurt herself. They want to stop coverage NOW??? More phone calls and paperwork ahead of me. Speaking of hormones... Jessica's cycle is messed up so she has to go see a GYN in a couple of weeks... yet another new doctor, for new problems.

Speaking of doctors and new problems, (well, 'new' as in 'within the last year or so').... Jess sees the GI doctor again this Thursday. She is still having some pain but we seem to have it more under control than a couple of months ago. I think the key is to keep her bowels moving but not too fast. What's the magic potion? I think it's 1 1/2 of the usual dose of mirilax on most days. We'll see if that changes.

Still working on the Legal Guardianship issue. All I get is dead-ends or $$ when trying to find out how to go about this. Wish me luck! Or find me a lawyer who will work for free... or even scrapbooking supplies! ;)

Justen finally got the official diagnosis of Aspergers. That's a whole 'nother set of issues - but at least we finally know what is going on with him and hopefully we can find some support for it. We are just hoping he doesn't lose his job because he offends someone and doesn't even know it. OY! Oh yeah.... he dropped a course last semester and didn't tell me (or his dad) and now he doesn't qualify for a federal grant to pay for his schooling - not enough credit hours. We can't pay for it so he is just going to have to either go part-time or not at all. At least he has a job.. part-time at Frys grocery store.


Lalaine said...

Congrats on the blog Nancy. :-)

Wow, there's a lot of new things going on in terms of medical care. I honestly don't know how you do it. Good luck and I hope everything gets sorted out. Hugs to Jess.


What a crazy week...I hope next week is better. Wait, this one isn't done yet...yikes!

Nancy said...

Lalaine... I take it one day at a time. I don't know how else to manage. lol! I'm sure everything will come together.... eventually. Thanks!

Nancy said...

Becky... you are right, this week isn't over yet - should I be scared? lol