Today I need to spend a moment getting real. I need readers to know that although I love my kids, would not trade them for the world, enjoy every day with them that I have… parenting 4 kids, 3 with significant medical needs, can be dang hard! Today has been one of those days when the “hard” far-outweighed the joy.
One of the necessary evils of mothering children with special medical needs is the need for help to manage the day-to-day medical care inherent in keeping my kids home and out of the hospital. I am approved to have round-the-clock nursing care in my home for my twins but have only experienced one such week in the history of my children’s lives. The usual week for me includes 3-5 nights when I alone am the overnight nurse, 2-4 days where I am the only adult providing medical care, in addition to attempting to “mother” and “home-make”… With that said, I have recently had the best long-stretch nursing coverage, by women and men who are some of the most competent nurses available for in-home care in our area. Currently I have five nurses who rotate shifts in my house. Each nurse works at least two 8-hour shifts/week, covering 4-5 weeknights and at least one day shift nearly every daytime. Well, on Friday, one of my regular nurses who has been here 3 years, one who covers 3-4 day shifts/week, began asking other nurses if they would be able to help me out if she were to leave. She told me that her family needs better health-care coverage and that the company we use for nursing does not have a plan that is accepted by her family doctors. Although she is looking for a position that can work around some of her shifts here, I know she would not be letting me know and asking others to take over shifts if she thought that she was going to find that option. It is breaking my heart that we will have to say goodbye to someone who has been so much a part of our family, someone who my children consider a family member, another loss in their short young lives. In addition to her probable departure, a second of our nurses is relocating out of state with her family and will be leaving after next weekend… and yet another will be on vacation for 3 weeks after her wedding mid-September. I will be back to 3-6 nursing shifts a week, leaving the other 120-140 hours of medical care and monitoring to me alone. I am already sleep-deprived and exhausted. I have NO IDEA how I am going to get through this again!
In addition to the fear of losing adequate nursing coverage for my kids, I am struggling again with the challenge of getting my son Tavish to eat. He has had a history of failure to thrive, difficulty chewing and swallowing, daily vomiting… overall a feeding nightmare! He has lately complained of pain, sometimes severe pain, from his GTube throughout the week. He OFTEN complains of pain when he eats to the point of being “full”… Because I feel like we have tried nearly everything, I recently took him off commercial formula and have begun to make my own- some he drinks, some not-so-much. At the same time, I am working with the doctors to negotiate removing the gtube so that Tav may experience less pain, maybe one day he won’t associate feeling full with pain- one day feeding/eating might be something he would enjoy… He has NOT vomited since I began making my home-made calorie-packed formula versions – can I ever find one he likes???
Tav’s GI doc listened to my thoughts about the GT, asked lots of questions about whether we used it much or not, and then took a more complete history of Tav & his other general health issues and concerns. She voiced her concern about taking the GT while he is still so small but said she would consider it after ruling out any genetic reason that we should keep it. Her concern centers around the fact that Tav and his twin AND younger sister ALL have less tolerance for heat and humidity than other kids. It is significant- none of them do well in temps above 75 degrees. Tav will lie down on the ground and have difficulty breathing after only a short time outdoors when its 70+. They all have reduced stamina in physical activities and Adrien recently was disoriented & fatigued during a short outing at a local park. The GI wants the kids tested for a mitochondrial disorder- MRIs. Mitochondrial disorders affect the entire body, diminishing strength, often progressively deteriorating the health and shortening the lifespan of the person affected. The particular disorder she is concerned about, affects the nervous system and GI tract, is a degenerative neuro-muscular disorder, with a life expectancy of 35 years.
35 years. Enough years to experience prematurity, hospitalizations throughout childhood, acne, teen angst, adolescent trials and tribulations… Enough years to complete a bachelor’s degree, a master’s degree, BEGIN a career… maybe BEGIN a family… Enough years to build your strength and overcome the challenges handed you by a severely premature birth- only to have your strength depleted, your motor skills lost, your ability to swallow and breathe on your own taken away again…
35 years. NOT enough years to actualize your lifetime career aspirations. NOT enough years to watch your children grow to adulthood. NOT enough years to outlive your older sisters and older brother… maybe not even your mother. NOT enough years to hold your grandchild in your arms and see the wonder of the world through his/her eyes….
When can this test occur? When can we rule out this or other disorders that may defeat them in their quest to overcome the limits from their early birth? WHY does no one see the need to move more quickly, to ease the stress of not knowing?
Life as the mother of 2 children with trachs, 1 child with sleep apnea and swallowing issues, and 1 child readying to leave home for a city college dorm- this is ENOUGH stress! Why add even more to it, doc?