I realize this photo isn't great, but you'll get the idea. In August of last year we finally hit our breaking point and hired a nurse that we paid out of pocket. I don't know why we waited so long. It was worth every penny and sacrifice. We kept her hours to a minimum, for grocery shopping, parent - teacher conference, and the occasional date. Then in December we got the news that Maaike had made it on the Travis C. Waiver, the Holy Grail for Utah's technology dependent children. The programs vary by state (and hopefully country), some being much better than others, but thankfully there is help out there. In Utah there is a 2 year waiting list, in some states the moment you are trached the calvary arrives, in some cases it might be worth it to move. The Travis C. Waiver covers only children who are dependent on machines for survival. It works as a secondary insurance, so we still pay for our regular insurance for Maaike and then the Waiver picks up what's left over. It also pays for 50 hours of nursing! Absolutely amazing! At first I didn't know what to do with all that time, but now I am finding endless uses. I stay at home most of the time the nurse is here, but now I am actually able to get through daily tasks and even adding back in some hobbies without having to compromise Maaike's care (a trach child should always have eyes on them). I've even been able to do a little sewing again. :)
But with new blessings come new problem solving. Between the nurse, my husband, and I it became a little confusing who was doing what and what had and hadn't been done. Light bulb. Make a medical task list calendar. Problem solved. Its so simple, but so effective. I've hand written what needs to be done each day and then we cross it off as it happens so the next person knows what is left.
I put everything on the list, from trach changes to emptying the diaper pail, from changing out the suction catheter to signing the nurses time sheet. Revolutionary. I need one for each kid. You can also see I've got Maaike's going to bed instructions, suction depth, and important phone numbers on her board. I hangs on the wall by the changing table (aka trach command center). I am patting myself on the back for this one. Occam's razor wins again!
Sister RAne! I don't know how long i have been following your blog now and I am embarrassed it has taken me this long to comment! BUT I have loved reading your blog and am amazed at your creativity, strength, organization, & talent!! You are amazing. But i already knew that. I learned that long ago as a newbie missionary in taiwan. I recently started working again as a Nurse and I am working with a family who has a sweet boy with a trach. IT has given me a new insight to your life!! I am so glad you qualified for some extra help and nursing hours -- i don't know how you would do anything without it.
ReplyDeletejust wanted to say hi and let you know that I love you!
keep up the amazing work!
So sorry it has taken me so long to respond. My computer blew up. But I am back up and running now and was thrilled to read your comment. Where are you at there days? What a blessing you are to the family you are working with. I have no idea how we survived so long without a nurse. Can you believe it's been 10 years since we were in Taiwan? And look, we are still doing some of the same things. I was a picture of your little girl on Facebook. She is adorable! I think you have a son as well? So glad you commented! It really means so much to me. I have so much admiration for you. You were so focused and hard working as a missionary and I'm sure that hasn't changed.
DeleteI am totally behind in my blog reading again, but these posts are amazing. It's amazing enough to find amazing systems like this, but to take the time to document it all...wow! I'm impressed.
ReplyDeleteWell, thank you Miss Aubrey. What would we do with out you? We'll see you at therapy on Friday.
DeleteI just created a post about your blog (with a link) on my child life blog. You have a wonderful site and I think that other child life specialists would learn a lot from your journey. Thanks so much for sharing your story.
ReplyDeleteI am so flattered. I hope this is helpful to someone else besides my own self therapy. I was reading your blog and I think you are doing amazing work. The world is so in need of people like you. May I ask about your name? My middle name happens to be Coy so I was curious about where zomccoy comes from.
DeleteThis is a great idea. I have a white board with vinyl titles that help us keep track of meds, trach changes, etc. But I think I want to steal some of your ideas because it's not as detailed as yours. Can you send me a copy?
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