The weather forecast is calling for some significant, drenching rain today here in northern Virginia. But, the morning is perfect. Well, I should say “was perfect”. I can see the clouds looking more ominous and feel the winds picking up sporadically as I write this. The good news is I took advantage of the morning weather to get Ryan on the patio for a few hours. The soaking will do our landscaping well too.
Ryan hung out with me as I made my way through stacks of nursing records. It was necessary for the impending chaos that is about to go down, solely caused by our nursing agency (originating from poor judgement one just one nurse). Let’s just say, it could be rough on us for a while. Very rough, indeed. Truth is, it already is. Sue spends every available minute on the phone trying to find solutions to this fix we were put in. Fair warning, it’s a dangerous, dangerous thing to come between a mama bear and her cub.
I’ll fill everyone in when the timing is right, but right now there are so many unknowns. Be sure of this, when I do, it won’t be pretty… unless someone just does the right thing. There is so much wrong with what happened to us that it might be difficult to find exactly where to start. You’ll find it outrageous, I’m sure.
So, those responsible would be well-advised to correct it or you can bet your paycheck I’ll put the smack-down on more than a couple people and companies by name and location. I can tell you this, it won’t be simply firing off a nasty email to the company (only). It will be a sustained campaign! I’m so pissed I could spit nails (not sure why, but I find this expression funny and just decided this will be the title of today’s post).
Forgive me for moving off topic. Back to today and Ryan. Since I took him outside much earlier than I normally do, we’ll need to make some significant adjustments to his schedule throughout the day. It had every intention of putting him on the RT300 FES therapy equipment until I discovered just how pleasant the morning was. It will likely cut into my nap time, but hey, it’s for Ryan. I can catch-up some other time (or maybe not… *^#@&! nursing agency. Whoa, I need to be careful else I go down that path again).
You know what? Maybe it’s best if I just stop writing.
Ken, I know you are generally a very calm, logical person — so for you to be this pissed, I know it’s for a very good reason, i.e. the well being of Ryan. I’m with you 110%. Ryan has already suffered enough in his young life, we don’t need agencies that are supposed to be in the business of providing care to be inflicting additional pain and hardship on him. That’s just not the standard of care one would expect from any professional healthcare company. Wow. You go, Ken, get ‘er done.
Love & prayers, especially for the extra strength and energy you must expend to right the wrong that has been done to your wonderful son.
Why is it so difficult for some people to so the right thing? I understand finances and policy and all that…but really, can’t people sometimes make a decision that is not based on restrictions, limitations and money and do the right thing. Like the folks who HAVE done the right thing: room for Ryan, ramp for Ryan, patio for Ryan, van for Ryan, landscaping for Ryan, fundraising for Ryan…… I hope that somewhere out there, there is someone who will step up and help you.
Katie I. says
I am so sorry to hear that you can’t find a company that will provide the services they are being paid to provide. I hope that, with as many followers as your blog and facebook page have, it would add some incentive for these people to do the right thing. It does seem ridiculous that we should be hoping that people do what they were supposed to be doing anyway. I hope there are licensing boards that can get involved too, if need be. Again, I am so sorry for what you and your family have been going through and this is just another wrench in the machinary you shouldn’t be having to dwal with. Good luck and I hope it works itself out. I would love to hear the name of the company that is putting you through this…
Grey Hubler says
Ken do not stop writing. As I said before, and it is a fact, this is the best website on the internet. Period.
We will help in the campaign, and spread the word, and that goes for any decision made, and that’s the bottom line.
Thank you. I meant for it to mean I’d stop writing for today… not forever.
This sounds like the same thing you went through with the first company that supplied nurses for Ryan.
I have searched for your home mailing address and can’t find it. I am sending some hard copies of information I just read regarding UTI’s. Interesting, that ongoing infections are linked to the very medications Ryan is taking. (Nexium, Prilosec, etc. that actually aid in keeping infections going). Also I have another article on some homeopathic remedies that have helped with UTI. We have totally done a 180 on what we are feeding Jonathan and I know I have sent you one link. I am going to send additional materials. When you have time, perhaps you can read these very informative articles and see if it is something that can help Ryan.
In the meantime, we continue to pray. Jonathan had three back to back seizures yesterday so we are working our way back from that and the continued sleep deprivation we are constantly in. I think it is the norm now?
Thrilled that Ryan has a beautiful garden to go out into. The Lord has sent to many wonderful people to help you all. It is not coincidence.
Found the address. Will mail on Monday. Hope some of the info helps.
Rita Caporicci Hoop via Facebook says
Now that you have surveillance cameras installed in your house, you could probably create a reality show (and make lots of money!) with all the drama you have to deal with just to get Ryan the care he needs. It’s even more ridiculous than Jersey Shore! Move over, Snookie and The Situation… Sue-Wow and Kenny “The Spitter” D are gonna take on the health care industry by storm, and we are here to support you in that battle every step of the way. Ryan deserves nothing less. Sending you extra love and prayers today, Divineys <3
What a concept, Rita! Love it!
You’d best not stop writing, Kenneth! Don’t make us have to come over there! And besides it’s way too early for “Crabs on the Patio.” We are hearing, however, that soon the blue crab of Maryland and Virginia will be plentiful this year, and this is a good thing. 🙂
“Pissed” is a great word; it carries a lot of weight, and if we could spit nickles about the nursing situation, we would soon have barrels of Money. Great cartoon!
Hope you get the nursing situation resolved. Always here with love, prayers, and wishes for all good things for you and yours. NGA
Stop writing for today is what I meant.
Back to happy! 🙂
Gail Doyle says
Ken, Glad you got Ryan out early and we do need the rain.I don’t blame you one bit for wanting to “spit nails” ( picture is perfect) Why are you going through all this hassle ,because of what one nurse said?? Wish we were all qualified nurses ,you would have an overflow and abundance for sure.:)Hoping and praying this awful situation is cleared up and a kind ,caring person will be there for you all .Always here ,say hi to Ryan and give him a big hug from me. Love Gail