The tapestry of the life of a medically complex family

Archive for August, 2010

A moment…

I’m having one. A moment of I cannot take anymore of this crap. I cannot handle another thing piled on top of the week we are having. I cannot deal with training a new nurse while saying good bye to 2 nurses who have become family to my children. I cannot deal with a grown person who cannot deal with saying good bye in person to my children- who calls out and then txts “i’ll try to call”. I cannot deal with the fact that I have had to cancel an appt. for the 3rd week in a row because ppl don’t show up when they are supposed to. I cannot deal with a kid who is taking in his formula over an HOUR for the 6 ounce morning feed. I cannot deal with a visit from the local police because my puppy has been outside barking for 10 minutes at 10-freaking-30 in the MORNING- when the alternative is his coming in and harassing the 4 year old who has finally been moved on to his “breakfast food” and is taking another HOUR to eat a pancake- yes, 1 FREAKIN’ PANCAKE! I cannot deal with the city dropping a notice on my door that Thursday @ 6PM- to add to the pleasure of dealing with everything else- we will have no water until 5 or 530 AM the next day. I cannot deal with reviewing the possibility that my kids share a common degenerative terminal illness with my pediatrician on Thursday night- just before the water goes out. I cannot deal with another stressor, another phone call, another delay…

I cannot deal with how stinkin’ intuitive my kids are- when the oldest girl looks at my furrowed brow and says “You know, you’re the best Mom. You’re the best Mom and that’s why I picked you.”   When the younger girl smiles her curly smile and tells me “Momma, I DID IT! Aren’t you so PROUD?”   When my son rushes the last two bites of blueberry pancake, beams a heart-altering smile and promptly asks for a strawberry he ingests in few moments, wipes his hands on his shirt and says “I go playroom play wit you?” <SMILE>

I just can’t take how stinkin’ CUTE they are!  Darn them like socks….

Just a job

Last night I got confirmation of my fear: the nurse who has been with us for 3+ years is leaving for a day job somewhere else. She needs benefits for her family so I can’t blame her but sometimes I forget that my children are “just a job” for so many people who come into their lives. How do I protect them, or me for that matter? People come into our home, they are caring, helpful, loving. My children quickly grow to love the good ones. They learn the schedules, routines. Each of my three little ones anticipates the arrival of their favorite(s), knowing which nurse comes after which shift. Then their favorite nurse leaves…

Today I am crying, moping, trying to keep my sh*t together. I have not told them. I have not warned them. I am trying to manage the stress of all else that is going on with the definitive loss of more than half my nursing shifts in little over a week. I will be moving from about 16 shifts/week back down to 7.  55 hours seems like a lot of time to have a person in your home helping you care for your kids… until you look at the fact that 28 of those hours are while the children are in bed, over 3 nights, the only 3 nights you can sleep- but not until after 11p since you have to be up to let the nurse in, to “report out” on the events of the day, to communicate relevant medical info. and be sure that treatments begun since their last shift will be continued overnight. Then you go to bed and toss and turn until you either manage to fall asleep about midnite or you go back downstairs at 1230/1 a.m. to get benadryl or headache meds to HELP you to fall asleep… until you awaken in a panic after 4 hours because your schedule the other 4 days is getting up to check on the kids and be sure their breathing tubes are in place, CPAP masks are on, respirations seem normal… or on nights when they are sick you spend most of the night up doing breathing treatments every 2 hours, across 3 beds, hoping to catch some  ZZZZZs in the 90 minutes in between.      3 1/2 years of this – averaging about 35 hours sleep/week on the best of weeks.

Then the day shifts, well they do the 8-35 breathing treatments that occur daily in your home (8 is the minimum with 4 for Tav and 2 each for the girls). The nurse checks respirations, heart & lung sounds, trach & gtube patency; provides sponge baths, trach care, trach tie changes, gtube care and chest PT; monitors respiratory changes during play and other activities and monitors for aspiration during meals or feedings. When there is no day shift all these tasks fall to me, on top of the upkeep of the house, scheduling and following up of medical care appointments, reading stories, playing games, ordering oxygen & medical supplies, and all other single mom roles. The new schedule will hold only 2 weekdays with day-time nursing coverage…

Most (lucky) children go through life with one or 2 caring adults in their home who love them and manage the day-to-day for them. These *parents* are stable persons, present throughout the child’s life, through ups and downs, sicknesses & well-times. Other adults are encountered outside the home and may be transitional, temporary. These adults may support the family but are distinctly separate from the “family” of home.

My children were born through cocaine-induced labors, grew weeks to months in hospital settings where caregivers changed on 8-12 hour rotations across a day, 10-20 caretakers/week. They then were separated from all they knew, moved to either a new hospital or to a foster home- a temporary place which held caring, yet still paid, persons who watched over them, with shifts of other paid professionals moving through to play with and help care for them. Each of my children “lost” these families, however unusual the circumstance, to come home to me, the woman they were *grown for*, their mother and one parent they will ever know… And yet each week, they come into contact with others in their home whom they love and cherish and include in their hearts as family. These people, our nurses, are transient as well. Something happens, the nurse’s life moves on: job opportunities, weddings, parenthood… and my children “lose” – again and again. To these men & women, although they are wonderful FABULOUS nurses, who usually also love my children, my children are “just a job”; a job without great health insurance, without room for advancement, a job that sometimes needs to be replaced with one that HAS these opportunities/benefits, one which might eventually benefit their career & lifestyle.

How do you look into the eyes of your 4 year olds and the eyes of your 3 year old and tell them they are “just a job”? While their hearts are breaking and they are again learning to distrust? It’s “just a job”…

Not all 'sweetness & light'

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?

I will write about challenges

I will sometimes write here about “the ugly” that is raising kids with health issues that far exceed the comfort and competence of most people, including the doctors and specialists who treat their various & significant medical issues. On a day-to-day basis, I perform life-saving medical tasks multiple times. I am not unique, I am no super-hero, I am just another Mom of children with special medical needs. I have friends who deal with far worse circumstances, whose children struggle more significantly or whose struggles have ended with their achievement of their angel’s wings, but I will write here only about MY struggles, MY experiences. I will write with honesty, directly, often with raw emotion.

You may read along and think that my struggle is worse than you can imagine. You may read and ask yourself why I chose this journey when all I can do this moment is complain. You may judge my response as an over- or under-reaction to the events or concern of the day. I cannot speak for how you or others might respond to the same situation, the same threats, I can only speak for me. I will write things you may one time find offensive; I assure you here that that is not my intent. I work hard to live my life understanding that I have no right to judge the perspective of another; each experiences their life in their own way: lives their pain, succumbs to pressures, overcomes adversity… I respect that your comments will all come from the place of your own experience. I know that my writing makes me vulnerable to your judgments. I appreciate your attempt to respect my perspective.

A little surprise…

Soon after the twins’ arrival they needed airway surgery to open up the area under their vocal cords to allow air to pass over them. The amount of scar tissue that was present would prevent them from being intubated from above in the event their trach failed and their ENT thought it was important to have the surgery about a month after their transition home. I’ll write more about that (and other surgeries!) later because this post has another star: my youngest! [so far]

After the surgery, while the twins were inpatient recovering and awaiting the follow-up procedures needed before leaving for home, I had a visit from the twins social worker. We talked about how well the twins had bonded to me, how their birth family wanted to get a chance to visit in the fall, AND that their bio-mo was again in labor… My kids were 17 months old, their next older sister was 28 months old, and another child was being brought into the world through the same cocaine-tainted uterus that wreaked havoc upon my twins. Immediately I asked if the child was a girl or a boy… and followed with: “it really doesn’t matter but hopefully this is it for a while because I only have so many bedrooms.” With that comment uttered, I began the process of welcoming the fourth of my children into my home. She was a bit better off than the twins gestationally; her delivery occurred in the 33rd week of the pregnancy, making her a “giant” at 4lbs. 4oz.

The Department quoted concerns that my twins were too needy to handle another child- I sent them a slideshow of pictures of our walks along the river, trips to my sister’s, playing with toys in the playroom. The Department has RULES [unwritten] about not placing another child in a family that has children under the age of 2- they delayed matching my new homestudy until the week of my twins’ second birthday. The Department conceded that it would be best to place her with her older sister and brother. She was FINALLY going to get to come home!

Keva was a tiny babe when I first met her, March 10, 2008, 1 year and 1 day from my meeting of the twins! She was cuddly and snuggly and 8 months old, living in a foster home near where her bio-mo was last seen. Her loving foster parents cried when I first came, knowing they would soon be sending her to live with her forever family. Although we do not speak the same language, I understood the tears were shed for the sadness they felt in knowing they would miss her, as well as to share the happiness of her finding a home where she could grow up with her older siblings. Over the next week, I visited  her daily and brought her brothers and sister into town to meet her and get Easter Bunny pictures taken.

8 days later, the social worker parked her car out front and walked my precious new bundle up the stairs. Keva lay in my arms and the twins touched her face, held her hand, and brought toys to show her. I scheduled a family photo for that afternoon, knowing full-well I might realize quickly that there was no WAY I was ever going to get out of the house again! The pictures were a big success, all four kids looking intently at the camera, a smile from the teen at how crazy his Mom truly was.

For some time, this is the completion of our family. One day there may be others who join, related or not, but for now the craziness feels full, real, rewarding.

Twins

In early March  2006, Adrien & Tavish were born at 27 weeks gestation. Tavish was born not breathing and without a heartbeat- he was immediately moved to a resuscitation room. Both were intubated and moved to the NICU. Adrien weighed just over 800 grams (1pound 12 ounces) and Tavish weighed just 1000 grams (2.2 pounds). Both children tested positive for cocaine, as did their biological mother. They were immediately taken into custody by state social services.

Over the next 3 months, Adrien & Tavish struggled for their lives as they were fed through nGtubes and hooked up to monitors and ventilators. Tavish was trached first and was able to go home to a foster home in late June 2006.

Adrien was not trached right away. She regularly pulled out her breathing and feeding tubes and it took a lot of supervision to keep her safe. After her time in the NICU, she was moved to a pediatric rehab hospital and her level of airway obstruction was checked. The ENT doing the procedure found an almost completely blocked airway and placed a trach for her as well. After many weeks, Adrien was able to go to the same foster home as Tavish- they were together again.

Both kids were fed through NGtubes, had significant respiratory issues and had many other challenges to overcome. They were legally free soon after going to their foster home and waited in foster care to find their family. Over the first year, they suffered setbacks and hospitalizations but kept up their fight to live and thrive. I saw their cherubic faces, with trach tubes nestled under their chins, on a state photolisting page, and foolishly (& thankfully) thought “these are my children!”. I found out that the state agencies agreed with me and met them just after their first birthday.

Adrien was the shy one, leery of new people, remembering the hospitals, the doctors, the people who come in and out of her life; she kept a safe distance during our first meeting. She warmed up later in the visit and played peek-a-boo in my arms on their nursery floor. Tavish, less aware of a reason to be fearful, lay in my arms, looked up into my face and cemented their places in my heart. As he nestled into me, nuzzling my arm and falling asleep, I knew there was no hope of turning away or turning back- I had found them. We had found each other.

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