The tapestry of the life of a medically complex family

Archive for December, 2011

“Narcoleptic” Nursing

This topic surfaces about every other week in my circle of parents with children with complex medical needs. The topic of home nursing is always laden with challenge & pitfalls. To be clear: there are wonderful and professional men & women in the field of nursing, some of whom work in Home Care. As a parent of children with special & complex health care needs, I learned quickly that the majority of home care nurses do not have the skill set necessary to function well & adequately care for my children in my home.

Some nurses we meet are aloof & “all business”. They stand in my playroom, paperwork clipboard in one hand, stethoscope in the other. They attempt to “provide treatment for” my children’s “conditions”- not “provide care” for my children. For these nurses, I used to try to engage them around playing with my kids- but it’s never worked. Now when I come across these nurses, I tell them it’s not a good match.

There are nurses who are too far in the other direction: all play & rough-housing (with TRACHS!?!?!)- while forgetting to assess respiratory status, follow the medication schedule, or feed the children throughout the day. There are nurses who attend to all stimuli as the same level of importance, and those who over-focus on one thing & don’t realize my kids are struggling to breathe… Nurses run the full range of competence in the home setting as in a hospital- but without direct supervision or ongoing training, other than the skills of the parent.

One of the more dangerous behaviors common in home nursing is sleeping while on shift. I have caught numerous nurses (more than 10), sleeping during an overnight shift in my home with my two trached children. Friends have stories of nurses napping with children during the day, or falling asleep in a rocker while a medically complex child plays nearby. The most amazing part of this for me is that people sometimes feel like it is “no big deal”- & by people, I mean some parents &, almost always, the nurses who do this.

Have YOU ever been paid to sleep? It’s a JOB. Nurses are paid to monitor, NOT sleep. I’d argue that, if “it’s ok for a nurse to sleep”, the child doesn’t need a nurse and insurance shouldn’t pay for one.

Alarms fail. Even skilled assessment can fail our kids. Using these in combination is always safest- and usually most appropriate for complex medical kids with & without trachs. It is, unfortunately, also common in my circles to hear about a child’s self-decannulation & death. Skilled home nursing support is essential to the success of families trying to care for their complex medical kids at home. No sleeping on the job.

Holiday Tree 2011

The kids are becoming ill. We are creeping up on an anniversary & I will push through but already Keva 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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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.

Activity Tolerance

Yesterday we went for our second music group with our pulmonologist and other NICU graduates. The pulmo spoke about being aware of our kids respiratory baselines & to pay attention to their activity tolerance and share that info with he & our other docs. I have long been aware that my children have increased fatigue & reduced activity tolerance-especially Tav. Yesterday into today illustrated this more than ever to me.

All 3 kiddos were gotten up a bit early, fed & readied for a day out. We drove to our children’s hospital, about an hour away, then I put the twins in the stroller and wheeled them into the room used for the group. Tav was only off oxygen about 35 min in the early morning for nebs to be delivered, otherwise he was attached to a 1/2Lpm flow on portable and home tanks. At the class, he showed clear evidence of “stress” by being 100% physically withdrawn & having an elevated breathing rate (RR) of about 35 while seated.

After 1.5 hours of sitting ther, we went a few blocks away to “visit” a friend staying in a hospital residence while her son heals from heart & trach surgery. While there, he walked indoors, was off oxygen to use the bathroom (2min), and we sat on the front porch to eat lunch- for him 7oz of peanut butter milk. He sat there maybe an hour, while his sisters got to march back & forth on the porch after finishing a pretty full picnic lunch. Although it was in the mid-40s & eating is hard for him, there was no real exertion in our trip. He rode home attached to oxygen as well.

When we got home, his activity level was okay, maybe a little subdued, but he played after a neb, the Vest & snack, for the 2 hours until dinner. Dinner of 2-3T of stew took an HOUR- ysu a sign of fatigue. After dinner, we essentially brush teeth, toilet, sometimes read books (if we haven’t read a lot earlier) and tuck in for night nebs before sleep. Tav sang me the good night song with a tight, soft volume voice (compared to usual). He then almost immediately fell asleep during the first neb and slept through morning nebs given later than usual (about 14 hrs of straight sleep). He also only satted in the mid-90s (94-95) throughout the night on 1/2Lpm (usually rebounds to 99/100 by 11p or so). Is simply riding in a car and sitting in a group too much for him?


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