Thursday, January 12, 2012

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?


  1. I came over from Presser Foot, and as I was reading the latest on Maaike I was so touched. You have an AMAZING daughter. Not only is she incredibly beautiful, but I can feel her strong spirit through your words and pictures of her. I went through a course of chemo a few years back that included Bleo and it was not my favorite. But I understood why I needed it and I tried to make the best of the situation. And here's dear Maaike going through some tough, uncomfortable times and she's still smiling through most of it...even though she can't understand it. May God pour out his blessings on your whole family. I will be praying that this treatment takes.

    1. Thank you so much for your kind words, Maaike is amazing! I hope you are doing well and the cancer is at bay. When Maaike had her first ultrasound in China that was my biggest fear and one of the only medical words I knew in Chinese. I cannot imagine getting that kind of news. God bless.

  2. I also came here from presser foot and wanted to comment. What's lovely and what you may not realise about this post is the universality of "everyone thinks they know best for my kid". Regardless of the trach, someone will always comment on what is needed in the way of behaviour or sleep or food preferences or something! And just like you, a million mums out there will reach for their comfort - ice cream or their circle of mums who get it when the others don't.

    I don't want to reduce the specialness of your situation, or trivialise the stuff you have to worry about, but I hope it helps to remember (as you probably already do as you have other kids) that we are all rooting for you when someone tells you what you "should" be doing with your kid, trach or otherwise...You know what you are doing and you look to be doing a great job :)

  3. Amen sister. And on that same note, being a mom to any kid, special needs or not, is hard work and a matter of war at times when it comes to what others will say verses that you as their mother knows.

  4. I am excited for you to make that necklace. I love it. Thanks for commenting. Maybe we can make something wonderful while I am out there.
    Hope we are germ free when we come to Utah. We can't wait to come.