Five years ago I was employed outside my home and preparing for the homecoming of my ex-27 week twins who are both tracheostomy dependent. I am a single mother of 4, one who is now 19 and continues to live with family, my now 6 year old twins, and a nearly 5 year old who is also an ex-preemie. It was hoped my children would only have tracheostomies through toddlerhood, and then be able to get their trachs out. This has not yet been possible and I am still unable to work outside my home as a result of the intensity of their care.
Because all 3 of my younger children are ex-preemies, they have regular follow-up with multiple doctors, in multiple specialties, resulting in 8-10 doctor visits per month (x3). Because their needs are complex, their care is provided in our regional children’s hospital that is 100 miles round trip from our home. With gas prices, tolls and cost for parking at each visit, a typical trip to a specialist costs between $40 & $60.00. During a 10 visit month, our minimum costs just to travel & park are $400.00 . Summer visits tend to be at a higher number per month given that we see the “normal” clinics of dental, eye doctor and pediatrician. None of the above takes into account the extended costs when my children stay in-patient, which occurs frequently.
The utilities cost for maintaining my children is significant. Their respiratory medications are delivered by an electric nebulizer compressor- they receive about 24 neb treatments between them on a typical day. Their overnight humidity and oxygen is delivered by another type of compressor. Their chest physio-therapy is delivered through another electric device. As they are also heat-intolerant as part of their condition, when the rest of the area is thrilled to finally have a beach day after winter, my family is running air conditioners throughout our house to stabilize my children. These medical necessities, in addition to regular electric use to run a household, make my electric usage more than 250% that of any family in my area of similar size- the bills are proportional.
Each day I have with my children is worth all the money in the world to me- I just wish it didn’t TAKE it!