Organizing My Medical Task List

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!

Keeping Germs at Bay

This is posted on our front door.

It's our nice way to tell our friends and neighbors to stay away.   :)

It is hard and even impossible to keep germs from entering your house.  I have received advice from every extreme. From: "You are being way over protective.  She needs antibodies. Take her out. Let her get sick." to "You need to have everyone shower right when they get home to wash all the germs out of their hair and then change their clothes."  Honestly, the right choice is going to be different for everyone.  So far what we are doing is working for Maaike, but that may change.  Maaike is doing awesome right now and it is easy to start letting things slip a little, but the facts are that a tracheostomy opens a straight passage to the lungs and things can go from bad to critical very quickly.  Here is what we do to try and keep germs at bay:

• from October to May Maaike is house bound, she takes rides in the car, but only gets out for therapy and doctor's appointments
• the sign on the front door (above) 
• we wash hands and change our shirts when we get home from work, school, or church
• bottles of hand sanitizer at the front and kitchen door 
• we go directly into a room at the doctor's office, no hanging out  in the waiting room
• Synagis shots every 4 weeks during the cold and flu season (the RSV vaccine. It is very expensive and took several appeal letters for our insurance to accept it, but they finally gave in. :)
• I nursed Maaike until she was 14 and a half months to boost her antibodies
• keep our fingers crossed, hope, and pray

Despite all this Maaike did come down with RSV last June.  Thankfully, I'm guessing mostly in part to Synagis, it was a fairly mild case and she was not hospitalized.  It was however a very long and isolating winter.  This year I feel much more prepared to weather the storm.  This year we have 50 hours of nursing help per month so that I can go shopping, help at our daughter's school, meet my husband for lunch, or just go for a walk.  I can't say enough to the importance of a the care taker getting away for a little R & R.  Every parent needs that.  It can be really stressful to leave your child with someone, but be diligent to find that right person so that you can browse the produce aisle in total confidence.  My husband did phone interviews with 15 nurses.  I then did face to face interviews with his top 5.  I didn't leave the house the first little while that our nurse worked for us to make sure that we both felt confident.  And now I am hoping that she will be available when I need a nurse one day.

Other tactics for staying sane over the cold and flu season? I overdosed on craft items at Joann's.  My husband and I are getting better at stay-at-home dates. I made my husband buy me a treadmill and I actually use it.  I eat too much ice cream, hence the need for the treadmill.  And lastly, I reach out to my circle of trach moms.  They know.  They understand.  They've been there or are there and survived.  Some days hearing that makes all the difference.  How about you?