The tapestry of the life of a medically complex family

Archive for January, 2017


We sit at the end of an era of social progress and medical care access. I look in fear at the road ahead. If the changes in our healthcare since Nov 9th are any indication, we are on a downward spiral from access and availability toward a wasteland littered with the pages of equipment denials. 

We have had a good few years healthwise: no hospitalizations, adequate equipment & supplies, support from friends when supplies were delayed. We had home repairs & the start of a changeover of the electric so that we might one day use the second floor while still needing significant electric medical equipment. We have had one familiar nurse stay with us and she is reliable & skilled in the assessment & care of Trachgirl & Trachboy. Their hours were gouged while the insurance tried to dump us but I have been lucky not to have too many nights where no sleep was possible due to my kids’ sickness. It has been 19 months since I have had a nurse at night & we have survived. 

Beginning last month, the insurance has again tightened what they will provide for the necessary medical supplies for my kids. They attempted to cut our supply order by half- without regard for how much of the supply we might have on hand or consideration that we might, in fact, use MORE than they provide. I had to go through supplies line-by-line and justify the need for EVERY item- from a roll of tape to the single box of suction catheters. In going over supplies this month with their new “control the order” person, I discovered they had reduced them even further than last month- though the assistant on the phone does not think that is possible. 

Tomorrow we will receive the supplies and next week I will waste some time talking with the case manager and fighting for the two extra pieces of tubing and the other 5 trachs we need annually not to run out for weekly changes (you know, cuz 4 per month = 48/year and there’s 52 weeks + a MINIMUM of ONE emergency- removable airways sometimes become obstructed. You HAVE TO change them out to breathe when that happens.) The person coming to my home will also attempt to MINIMIZE the “skilled nursing” tasks necessary to keep my kids going. Technically it should be a look at the medical aspects of their daily care and a calculation of hours. These hours should cover the intensive care aspects of the day so that I get the opportunity to sleep some nights & “just be Mom” other times… The doctors who provide medical care to my kids see the need for MORE nursing, this woman thinks I am “too competent” & should therefore not have help. What bureaucrats don’t know is that providing ALL the medical care robs my kids of access to me as “just Mom”- the last time I read to/with them before bed? I’m pretty sure I read something on Xmas Eve as a special treat because my “everyday” is so exhausting I don’t get time to do it other nights. 

Anyway, I didn’t write tonight JUST to complain, I wrote so I would remember what we have today even WITH the recent reductions. I have a caring, competent nurse who comes 29 hours a week to take care of the medical needs of my kids- paid for by my kids’ Medicaid-program health insurance. My kids sleep with sterile water mist compressors running through circuits we change weekly to ensure bacteria and mold growth are kept to a minimum for their health & safety. Oxygen is bled into the set-up continuously for my son & “as-needed” for my daughter via oxygen tubing from large liquid tanks in their room. Their tracheostomy tubes (airways) are changed out weekly to keep colonized bacteria from taking hold and becoming the next pneumonia. We have adequate suction, oxygen & oximetry supplies for the time being. Our equipment is in good repair, including the nebulizers and portable pressurized oxygen so we can go out and play & enjoy “living” healthy. 

My son has a GTube in the correct size that is changed whenever the balloon or valve fails from frequent use. We have enough supplies currently to keep up with the need to change tubes, extensions & adequate feeding bags, gas relief bags and a working, rechargeable feeding pump. We have a grant that covers some part of the ingredients found in his homemade formula and hydration blend. My daughter has enough formula on hand to have some daily until the insurance authorizes the approval to getit again (we hope…).

My 3 kids albuterol, atrovent, hypertonic saline, saline, pulmicort, duoneb, prevacid, nexium, miralax & dulcolax, epipens and iron, as well as antibiotics are covered right now. We have the equipment & supplies we need to give them these medications. For ALL of this, I am thankful. I will be hopeful that their coverage will be defended and secure going forward. Nothing is certain right now but I have to hold to this small hope.

Peace & health to you & your family. I will continue to fight for mine.