The tapestry of the life of a medically complex family

Archive for the ‘Nursing’ Category

A Long & Winding Month

June is here & has already begun to close in as one of the busiest months for getting things done. At the end of the week, we go to a new hospital and the Mitochondrial Disease/Metabolism Clinic for one kid- although they want me to bring along records for my youngest. Last month, about 3 weeks ago, a request for “complete medical records” was made. Today I received records for the ones to be brought along- not one pulmonology note, not one neurology not, not one orthopedist note, none from cardiology… Complete? Not exactly. So tomorrow will be spent calling the medical records department and following up on this & the other request- while I do not have a nurse along for the ride.

The appointment Friday will be tough. I am trying to write a summary list of strengths and concerns. I still feel pretty ambivalent about whether this is truly what we are seeing. At least it is also metabolism- cuz this kid has got some SERIOUS ability to burn calories! Maybe they will have a suggestion that outweighs the GTube recommendation of the GI & Cardiology- maybe they won’t but it’s worth an ask.

The next scheduled appointment is the day when all 3 kids are scheduled to go under anesthesia and have their airways looked at. June 18th will be a crazy-busy day and I have yet to line up hands to hold & rock kiddos pre- & post-op. The appointment may be bound with an in-patient stay overnight- making this a crazy 2-day extravaganza. At least it is at a hospital I 100% trust with the care of my kids so it won’t be as stressful being in 2 rooms if all 3 need to stay.

Closing out the month will be an ACTUAL pulmonary appointment. We have been bundling these with the Complex Care appointments and not really getting much time sometimes. Our pulmo has a great reputation, is easy to talk to and has significant creative ideas on how to treat my kids- but is SO busy taking care of everyone complex in our medical mecca that he is hard to get together with outside his clinic. I will be glad when the month is over and am hopeful the information we get or changes we make will help my kids thrive throughout the rest of summer- & beyond.


Happy Happy Birthday #6

My twins celebrated their birthday today. They woke early and had a busy day of:

  • Ice cream for breakfast
  • Opening presents
  • Testing new toys
  • Playing outside
  • Gettting reading to “party”
  • Having pizza, cake & ice cream with FIVE of our wonderful Home Care nurses- including 2 who are no longer working here
  • Getting to bed late

Let’s hope they sleep in in the morning. Be well & goodnite.


Today my son spent hours off oxygen when he should have been on it. A nurse forgot. The nurse switched him from a portable tank back to the recently filled liquid tank and forgot to turn on the Liter flow.

I watched him have a higher than normal respiratory rate. I watched him play lying down. I watched him develop black circles under his eyes during dinner- yet I never second-guessed the nurse’s competence in following doctor’s orders.

I made the assumption that the nurse had turned the oxygen ON when his tubing was attached to the tank. I looked for reason’s beyond what would have been my first instinct had I been home alone and been responsible for providing him oxygen. Such a competent nurse made a simple mistake. And tonight my son pays. He struggles to maintain sats above the ordered minimum & requires oxygen to supplement his fatigued ability to breathe strongly enough. Again my son pays for the mistakes of others.

And I live the guilt.

the Evolution of Saturday Morning

My oldest child is 18. I remember Saturday morning with him: a time of lounging together, sleeping in, Saturday morning cartoons… It was the morning we ate at the diner, got out to the park, met friends for hiking excursions…

Now Saturday “morning” typically begins as a continuation of Friday evening. Getting to bed before Tavish completes his first “barrel roll performance” is impractical. I typically stay awake and occupy myself with the computer or TV or laundry until just about 1a.m. before settling in to my first nap of the night. Overnight “morning” continues as I am startled awake by an oximeter alarm, or a breath that sounds off, or the crashing of knees into the metal siderails of the medical cribs. On & off, I steal sleep in 2-3 hour increments until true Saturday morning begins.

Gone are the Saturday morning snuggles, the invasion of my bed by young children to gently awaken me. Today’s Saturday mornings begin with a startle to awake and realizing that the morning neb treatments must begin or the feeding schedule will be so off we will miss an essential 200-300 calories for the day. Typically I shut off oximeters and then the mist compressors. Together the twins and I stretch our arms to the side, close our eyes, and mark the “moment of silence” before the mechanical deluge begins anew with nebulizer compressors running the first of 2 morning nebs. As the first neb runs, I get Keva from her room or the nearby cushion on the nights she “rooms in” in our “ward”. She gets to the bathroom as I try to make my coffee so I can complete all the rest of the morning tasks which keep my kids breathing well-enough to enjoy some of the day.

It has been quite an evolution from the morning of rest, of “refresh”, to the morning of “assess, neb, toilet, meds, nutrition, assess, repeat”.  The most difficult part of the transition? There no longer IS a “refresh”…

A Quiet Week

This week is a “quiet week” – 4 days no nursing & only 2 doctor appointments, 1 for each twin. O sure, the doctor appts we are going to are genetics (results) and an ECHO with cardiology follow-up, but it’s only 2 trips in- and one of them I will have a nurse.

Maybe its just that the next 46 hours are covered with nursing. Maybe it’s that place of denial where a parent needs to live to get through the stress of waiting for testing to see if your 5 year old is suffering from pulmonary hypertension… Maybe. But this is my quiet week.

Intervention Services and My Twins with Complex Medical Needs

Nearing the twins birthday has me thinking about their next Individualized Education Plan meetings. Throughout life, my children have faced developmental challenges in addition to their medical ones. My children have several diagnoses of developmental significance, including Cerebral Palsy (CP), in addition to their medical ones of “Chronic Lung Disease of Prematurity” and “Gastro-esophogeal Reflux Disease” (GERD). From an early age, right after discharge from the hospital, my children have participated in several therapies to help them to ameliorate these challenges.

Beginning far behind the 8-ball as 27 weekers at 1 pound-12 ounces and 2 pounds-2 ounces, my kids have come a long way to the thriving, speaking, growing preschoolers they are now. When they arrived at MY home at 14 months, Tav still played almost exclusively with his hands and lay on his back unless propped or held in another position. Adrien had yet to walk but was cruising along furniture and sat to play by banging or stacking toys. Shortly after moving in, Adrien began to walk and Tavi began to reach for and grasp toys. The months of Early Intervention in their foster home and its continuation here had begun to pay off.

After their first airway reconstruction surgery, to correct the severe narrowing under their vocal cords, the Early Intervention team expanded to include Speech Therapy and Physical Therapy in addition to Occupational Therapy. These therapists saw my children through many milestones, from becoming independent in sitting to standing to walking to jumping in physical development, from learning to voice sounds to babbling to vocal words in language development. Although my kids made wonderful progress in Early Intervention from birth until the age of 3 years, they continued to need services when they turned 3 to support continued growth and development in these and other skills.

The school district met with me and the Early Intervention team and agreed, in the case of my children, that they would best be served by continuing in-home services to avoid exposure to colds and other illnesses that could be life-threatening to them. Wonderfully enough, the Early Intervention team that had been working with them included members that could contract with the district to continue to provide services for my children. These people, PT, OT & SLP, brought a skilled team to our home to work with my children on moving forward. For the first year both children received OT & Speech services, and the PT came to work on strength, motor planning and muscle control with my son. This past year, my daughter continued with only speech services from the SLP, needing to work primarily on voice quality, rather than vocabulary and language development.

As we hit the mark for their third IEP meeting, I view my children’s progress as reason for celebration. My daughter may no longer qualify for services of any kind, although she continues to have a soft voice and may need more work on breath control when and if she has her trach removed some years off in the future. My son now walks, runs, draws simple people, uses scissors to snip paper and speaks in complete sentences when he is calm and comfortable with the person he’s talking to. He still struggles with strength and endurance (common across all 3 of my younger children), grasping crayons and using enough force to make clear marks on paper, eating textures or solid food and communicating clearly.

Both children continue to have health needs that limit their access to participating in groups of children, so neither will be enrolled in a preschool class. It is wonderful to have 3 preschoolers in the same home so we can do group activities and they can learn the give-and-take of sharing and playing with others. During the upcoming IEP meetings, I will work with the team to design an educational plan which will help both of my 5 year olds to continue to grow and flourish. Will it be one plan? Will there be two? That’s the great thing about working together with a team; different opinions and impressions will be considered and we will hopefully agree to the plans necessary to help my children continue to move forward in their development.

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”…