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!