A blog about the grief after losing a child to Niemann Pick, Type C, a rare disease, and how I'm moving forward with my life.

Wednesday, November 7, 2012

It's a bit late...but save it for later

I read a wonderful blog entry on the Children's Hospital Boston web page. 

Weathering the storm with children who have chronic illnesses

Although written for keeping children safe and healthy during weather emergencies, the tips can also be used to prepare adults.

When we received Dan's diagnosis, one of the first things I did was contact my local electric company.  They needed a doctor's certification and several pages of paperwork from me, including the types of equipment I had, the battery backup power of each piece of equipment, and the duration of use each day.  My electric company does not provide generators and could not guarantee that our power would be restored first.  But they have always called us with a recorded message about the impending potentially adverse weather conditions.  There is also a dedicated number to call when the power does go out.  But even if you don't call the dedicated number the account is "flagged" to talk to a representative to make sure the information is recorded properly, including how long we had been out and the current equipment being used.

But don't forget about your gas company too, especially if you use natural gas or propane for heating (for those of us especially in the colder climates!!)

Although it would save some money, I refuse to give up my old copper landline telephone.  I am able to call 911 and they know where I am instantly.  Yes, GPS sensing on cell phones is getting more precise, but if you can't talk, having the immediate recognition form the landline provides just that little bit more comfort.

Three pieces of medical equipment in this picture:

  1. Feeding pump (on the pole on the right)
  2. Suction pump (just to the left of the feeding pump, partially behind the bed rail)
  3. Apnea monitor (small white sensor to the right of the shoes)


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