The tapestry of the life of a medically complex family

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Surreal

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. 

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Beauty

I keep looking at this online photo of a friend. It keeps coming across my newsfeed as people comment on it. I knew her as a child. We went to school together, her Mom coached a Little League team. I went to few parties as a kid but I remember the pool at her house- I was invited there even though it was my sister & brother who were on her Mom’s baseball team.

I remember her as a beautiful person- on the inside. The girl with the blonde hair, rounded face & eyes that crinkled with her broad smile. I look back & think maybe few people then saw the beauty I reflect back on each time I see her smile cruise my Newsfeed. She was not a thin child- nor was I. But I remember her laugh, see her childhood smile in her face, remember her as being kind, accepting. I was bullied lots in childhood- I ignored most of it (except the rocks that hit me)- but she was NEVER like that in my memory.
Today my newsfeed is flooded with people who comment about her beauty- and I wonder how long they have known. You see, she is thin now. She is married to the “swoon guy” of our high school class (also a nice guy in my memory). She works as a beautician/ hairdresser/ stylist. I wonder if these same people saw her beauty while she grew up, before she was thin. Before her outside matched the definition of society, while she was a beautiful & “not thin” person… I know I did.

Foster Adoption is a GREAT way to build a family

I could not say this better myself.

ADOPT

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Rare Diseases Affect Us

When you are the parent of a child who is medically complex, you have some “Rare” friends. The first few years of my twins’ lives, we chalked everything up to being born at 27 weeks gestation. My 33-weeker was thought to need the first 3 years or so to progress, develop strength in her muscles and voice box, to “get better”. If you have preemies whose challenges exceed the expected complexity of their birth history/prematurity, after about the age of 3 or 4, doctors begin looking for a unifying diagnosis to explain the “unexpected”- especially if they begin developing “new” challenges.

After the age of 4, it became very obvious that something was continuing to affect the strength & vitality of my children. Overheating in warm temperatures (+/- 70 degrees F) without exertion, having low exercise tolerance and experiencing worsening work of breathing and/or asthma symptoms while it has been treated aggressively for years, resulted in referral to high tech evaluations for possible Inborn Errors of Metabolism.

Tomorrow is World Rare Disease Awareness Day. We will all “Wear Jeans for Rare Genes”. My children’s genetic & metabolic assessments are ongoing & it is believed 2 of 3 may have their own variation of a very rare metabolic disorder- but we’re still not sure which one. The following is a list of disorders for which my children have been screened- it is not exhaustive- and a few diseases are included that affect a few of our close friends. Please learn more about Rare Disease & support research funding for the children, individuals & families affected by Rare Disease.

Mitochondrial Disease is a disease affecting the mitochondria in cells. It is a disease of cell energy- like running on low batteries- which causes progressive decline in many body organs, often resulting in early death.

Lysosome Storage Disease is another progressive Inborn Error of Metabolism. The link is to a video where Alec Baldwin simply explains the disease & how it may affect a child or individual.

A Congenital Disorder of Glycosylation is another disease of cell metabolism which causes decline in multiple organ systems & shortens the lifespan of affected individuals.

There are many, many more Rare Diseases that affect anywhere from a single known case to 5 known cases (2 being my children) to 100s of cases worldwide. Without research funding, these illnesses will continue to ravage the children & individuals in mine & other families. Please care WITH us & Wear Jeans for Rare Genes tomorrow.

Fourth of July 2012

Today was another hot & humid day for us here. We spend hot days indoors because heat fatigues Trachboy VERY quickly and Trachgirl & Youngest have little stamina in heat themselves. On days like today, we crank down the AC and find things to do in the playroom.

My sister-in-law & nephew came to visit for a few hours and all the kids enjoyed playing with their toys as though they were new again. Trachgirl & Youngest drew pictures for our guests and Trachboy raced cars and spun weebles on the “ferris wheel”. It was a great way to break up the string of hot days we have been having and gave Momma some adult conversation! A great day which ended with cake! [how could it be anything BUT…]

Happy Fourth of July!

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Want to Write

I want to write… but oximeter alarms sound so frequently I am waiting for the nurse so I can go to the bathroom. I want to write… but New Year’s Day brought the stomach flu to ME while I was alone with the recovering kids all day. I want to write… but when the nurse arrives, I need to SLEEP. So goes the complex medical life…

Holiday Tree 2011

The kids are becoming ill. We are creeping up on an anniversary & I will push through but already Youngest has begun to wheeze & have bronchospasms. Fortunately, the twins only have a bit of congestion and the occasional sneeze/cough so far.

Regardless, my oldest was home and we needed to get a tree and get it decorated before he goes to his Dad’s for the holiday.  Enjoy the photos- we even got a full family shot! Happy holidays!

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