Working This Out
From Kate:
It has been an intense 12 hours to say the least. As I write, Mark is orchestrating Getty’s care from the foot of her crib as others give her care. You know as if this diagnosis is not devastating enough and if fighting for her care isn’t horrible enough, but now our healthcare provider is telling us that we can’t use the machines they trained us on for the care of our daughter. I can’t tell you how exhausting this is for Mark and I, it is simply insane.
But let me say this before I go into what we learned and what we will be doing tomorrow. Getty is doing awesome. Because of the consistent care she has been getting from her parents and her nurses she on the road to recovery. Because of the gracious advice from Dr. Schroth, Getty is getting the treatments she needs to make a full recovery.
What I think Mark and I have come up against is a system that does not understand specialized care. Getty’s care is so incredibly nuanced. A slight turn of the head could spell disaster. Not enough suction in certain places if unnoticed can also compromise her health. Positioning her needs to be delicate and supportive. She coughs a certain way, her gurgles mean different things, her grunts and coos can mean I am hurting while that same coo can mean I need a break or hello.
This system has unfortunately lumped my child in with every other child and assumed she fit the mold. Well here’s the deal, she doesn’t and she deserves to be supported by a system that will HELP HER THRIVE.
So tomorrow we will be meeting with a few people who will be helping us figure out next steps. We have been allowed to suction and use cough assist on Getty intermittently between treatments, with OUR equipment. Oh didn’t I tell you……Kaiser doesn’t have a bi-pap machine nor a cough assist machine for her upon admittance. Since Monday morning they have continued to depend on ours. The same one’s we are not allowed to use.
I am sick that I even had to waste my time writing this post. It is disgusting that a family has to even be put in this situation. More updates to come.
I want to thank everyone who called and emailed us and left comments. I was talking to absolute strangers that just wanted to help. I am so humbled by how much you care for our Getty. I was nervous soliciting help, but oh my goodness the feedback we received was so helpful and you led us in the right direction. Thank you for helping us advocate. It definitely takes a village.
2
Jul
2011
4 Comments
Jul
2011
4 Comments
(+add yours?)Leave a Reply to Carol
Was at a loss, myself, so I’ve shared your story with a few friends who I thought might know how to help with your patient advocacy needs. I hope you are getting the advice and support that you need! In the meantime I’ve been doing what I do best, which is keeping you all in my thoughts and prayers.
Keep on ‘keeping on’. . . We’re all here pulling for you!
I am so sorry that you are having to deal with all of this! It’s absolutely ridiculous – beyond words!! I am glad to Getty is doing well and I will keep praying for a speedy recovery so that you can get home where you obviously belong!! By sharing your story you will be helping so many others down the road. Looking forward to better news,
First off let me say how happy i am to hear getty is recovering and headign in the right driection for a discharge! And secondly, KAISER IS A JOKE WHEN IT COMES TO CONDITIONS REQUIRING SPECIALIZED CARE! I remember telling you guys from the beginning to run as fast as you can from Kaiser and i hope whatever you have planned slaps kaiser upside the head and forces them to make changes that will help aid children/people that require more than a tylenol or an x-ray. ive said it before and ill say it again, keep up the fight storm family, your precious lil getty will be your strength and you are hers <3 im here for a chat if u need it! 2am or 2pm, doesnt matter the time, im here!
Hello, all the way from Australia.
This post seemed so familiar to me…..my daughter has a life threatening illness that requires ‘very specialised’ treatment and for 3 and half years I have battled with the medical system. Its a long story…but I have grown to be a more confident person and what I have learned is that: I OUTRANK everyone. I don’t care if you are the top professor/specialist with a million little letters after your name. I am the childs mother and I have just as much qualifications as anyone to make decisions about my childs welfare. As one kind GP (a very rare species) said to me “mother always knows best” and there is nothing truer. Go with your gut and don’t let them bully you. I am now in a position where I (a single stay at home mum with no college eduction) tell them (these top paid, highly specialised, university professors) what our next course of action will be and I dare them to tell me otherwise.
Good luck with your journey.
Vicki