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?
