Just one more day filled with furious packing remains before departure!
Today was terrible and I am glad it is over. Not only did we have a brand new services coordinator, we had a brand new district nurse. These meetings every 90 days determine our nursing and our therapies. So, to a house they have never been to before, they decide to bring yet another new coordinator in training and have her do all of the paperwork.
After not showing up on time, taking 2hrs to do a meeting that should have taken 45 minutes, and giving me the patronizing, “we know how you feel” line of crap, they cut 8hrs a week away from our nursing hours with a, “please call if you need anything” dismissal.
It gives me such a headache to have these meetings. It is humiliating. I don’t feel like I am entitled to receive services, I am lucky to have them. I just feel desperate for the help and know that it will all be gone sooner that we will be ready.
Brendan had a final checkup with his pulmonologist today and got the “all clear” for travel. On the way to the hospital, Trevor slept for 5 minutes in the car. On the way home, Brendan slept for 5 minutes in the car. That was naps for today!
One wiped out boy!
5:30PM, Trevor hit a wall right before the last bite of PB&J.
UGH. It was too early to put him to bed, too late to allow a nap. I got him up and gave him a long bubble bath and tried to put him to bed early. He still put up an hour long fight to go to bed, but was asleep by 8:20pm.
The stress of the day is still sitting like a lump in my throat and a pit in my stomach. I am really looking forward to vacation and seeing all of our family. The only thing more relaxing than 2 crazy kids is 7 crazy kids!
I’m so sorry to hear that they cut your nursing hours. Do you get to choose if it’s one day or one night? I hope at least you’re in control over when you can use the hours they left you with. 🙁
Poor tired little boys! I’m so happy to hear that the pulmonologist gave Brendan the all clear for travel!! I can’t wait to see you. I hope the boys will travel well. It’s so hard to believe that your leaving Friday morning! What a birthday for Bill! A year ago, I’ll bet you wouldn’t have imagined it. I hope your last day of preparation goes well.
Lots of love and hugs and kisses and wishes for a safe and low stress journey here,
Gramma xxxxxxxx
It is so sad that the state of medical care means treating the patients and their families like they have done something wrong! And the people who administrate and coordinate act like they only “give” something when they “have to” (too much paperwork goes with it), so you have to fight to get what you really are entitled to get without question. I wish you guys didn’t have to fight so much, and it takes strength to do so. We can’t wait to see you all, and hope that maybe my 2 crazies can help wear out your 2 crazies (or will that go the other way?).