The tapestry of the life of a medically complex family

Archive for August, 2010

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 Trachboy 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”…


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!

My youngest 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. Youngest 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.


In early March  2006, Trachgirl & Trachboy were born at 27 weeks gestation. Trachboy was born not breathing and without a heartbeat- he was immediately moved to a resuscitation room. Both were intubated and moved to the NICU. Trachgirl weighed just over 800 grams (1pound 12 ounces) and Trachboy 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, Trachgirl & Trachboy struggled for their lives as they were fed through nGtubes and hooked up to monitors and ventilators. Trachboy was trached first and was able to go home to a foster home in late June 2006.

Trachgirl 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, Trachgirl was able to go to the same foster home as Trachboy- 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.

Trachgirl 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. Trachboy, 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.

My eldest

It began in a way unplanned, unexpected. 17 years ago I became a ‘Mom’. His arrival was delayed- a preview of his reticence to join something new that has continued throughout. He protested his arrival, forcing the use of strong medications and other “encouragement”. When he arrived he surveyed the 15 medical personnel wondering “what the heck are they worried about”? After an 80 point heart rate drop that lasted his final 11 minutes of incubation, he literally looked around and relished the chaos he had been able to cause.

He grew as a wonder- bright, inquisitive and ever tall for his age. A quiet, only-child who excelled through elementary school. A teen who went through the usual lax response to the requirements of his high school coursework, rarely turning in neat and orderly homework, occasionally not turning it in at all…  Yet, in 3 weeks, he heads to N. University, seemingly ready, planning to work hard to get the co-op work he wants when that part of his program begins next spring.

What I want to tell you about him is that he is amazing, he is caring, he is the best work I have EVER done. I marvel at him and hope I can do nearly as well with my other 3 – when he isn’t currently deserving to be killed because, after all, he IS a teen-ager! When he is “on the amazing channel”, I see a caring young man who plays with 3 siblings who joined him here only a short time ago. Siblings who usurped his reign on the “only child” throne. A brother and 2 sisters, years his junior, whose lives are complicated, time-consuming, receive his love and attention daily. He accepts them as I do: full-fledged family members who share our hearts but not our biology. It is acceptance beyond his years, beyond what others and older relations are capable. He checks in when he’s away, reads stories and provides good night hugs. I see him and know I have done my job; soon this man-child will enter the world an adult who contributes to the world, caring for others, defending those less capable or fortunate. I love the view I have of his story unfolding.