The tapestry of the life of a medically complex family

Archive for the ‘Nurse’ Category

TheUsual

By the time I have the help of another nurse, it will have been 129 hours since the last covered shift. The kids are on “sick plan” – 8 scheduled nebs a piece, with additional nebs for break-through wheezing or congestion. 29-30 nebs every day, on average.

Tonight, for the first time in 2.5 weeks, all 3 are getting oxygen saturation reading of 99-100%. Maybe I will be able to drop off to the “regular” of just 6 nebs/day.

5+ days. 150+ nebs. Our last time trying ‘baseline’, my youngest spent half the night at 89…

It’s exhausting but extra nebs is better than going in. Whatever this is, I want it knocked out of the park. A couple more nights, some really good days, maybe Monday.

The Best of Nursing

Some of our home nurses have been wonderful home nurses. These women & man have worked tirelessly to provide my kids the necessary medical care, caring and developmental support in the best of all possible ways. When my children first came home, they were 2- and then 3- VERY complex, fragile infants. At 15 months old, my twins wore 6mos sized clothing, their trach masks were nearly the size of their heads, and only my daughter could make sounds and crawl.

Nurses came into my home and were trained to change a trach in less than 20 seconds because my children could get no air in without the tube in their neck. They were taught to suction for less than 10 seconds and at a very specific depth, lest they collapse one of my children’s miniature lungs or cause more damage to the trachea. My kids were problem feeders, constant vomiters, attached to multiple pieces of medical equipment all day and these nurse came to work on the front lines of my kids’ medical care to help me keep them home, keep them safe and succeed as a family.
Who were/are the successful ones? The successful ones are nurses who have good, basic clinical skills. They can auscultate lung sounds and differentiate wheezes from crackles from rhonchi from a pleural rub. They know to count heartrate & respirations for a full minute with young children. They know to give a child a minute to cough & clear before heading straight to suction. They can watch a child at play in their fleece outfit and know their respirations are above normal and they’ve begun retracting- before lifting the shirt to count & see.
These nurses also have the ability to LISTEN. They take direction from the parent while following the orders of the doctors. They measure carefully when using a graduated suction catheter. They remember this is “home”, not “hospital”, so they take the time to play, to laugh, to sing, to enjoy. They follow through on exercises, strategies, procedures and activities that help the kids move forward in their development, while continuously monitoring and assessing their health status.
These nurses also have communication skills in the area of bringing information to families. They sometimes come with other experiences or discover a more effective way of doing something. They might have new medical information about a child’s diagnosis or information to share about a medication. They are able to talk with a parent without talking down to a parent. They give information that supports more effective care of the kids, better quality of life.
I have appreciated every minute of support from these nurses. I have worked to be sure they know how much they are valued. My children have thrived under their care & with their support. Many of these people have had to move on with their careers, their lives, but we still think of them often and cherish their support in this complex medical life.

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.

Basic Skills

Sadly enough, so many of the nurses sent to interview or train here just don’t have them. The “nurse” scheduled to come tonight cannot assess lung sounds, determine if my kids secretions are copious or dry to the level of needing intervention; and when TOLD to intervene, she stands & waits for direction. There is a level of ineptitude that I have come to expect, but this bungling person has been “trying” to gain a skill for more than a month now.

I know that it’s time to let her go but, in addition to her lack of skilled nursing ability, she has no filter on sharing every minute detail of her life. Because of this, I know her family business has failed, her husband is only working part-time and she relies on the income from my home to keep a roof over their heads. In today’s economy, it is hard to discount the very real role this job could have on a person’s ability to avoid homelessness. This responsibility is far beyond what I signed up for when I accepted nursing support to maintain my kids at home.

My “Wing Girl”

This morning, our very handsome overnight nurse came in for a day shift. While the kids sat at the table, my youngest looked across the table at him & said:
“Let me see your hand.”
The nurse obliges her, smiling, raising his right hand and turning it for her to see both sides.
She says: ” Now show me your other hand. I wanna see if there’s a ring.”

Laughing & blushing he brings his other ringless hand up for her to inspect.

That’s my Wing Girl.

Reconstruction with Rib Graft, Part 4

The events of the NG experiment weighed heavily on me the next day. When I spoke with the fellow, he agreed that starting slow “listening to the Momma” might have been a better idea. He told me we could try it again and run it slower or have her stick it out for 2 more days until she could try to pass a swallow the day after the stent was out. I opted to wait. She had already made it nearly a week, 2 more days would not be much longer.

By this time Trachboy had begun to feel better and was playing more actively in his crib. He was taking all fluids through his GTube or by mouth so he no longer had an IV. Sometimes I would place them together in Trachgirl’s crib so they could snuggle together or play with small toys. Fortunately we got through the next few days without incident. Trachgirl’s follow-up x-rays did not show progressive pneumonia from the aspiration and she handled the removal of the stent well.

Her swallow study the next day cleared her for nectar thick liquids and she happily took her first bottle in over a week while in my arms. Things were definitely looking up. The hospital scheduled us to leave the next day and visitors from the Dept. of Social Services & our Community Medical Alliance team spent part of the afternoon with the kids and I. It was during this visit that we learned there was a new baby and tried to wrap our head around what that might mean to us as a family.

When we headed home, Trachboy went in the car with a nurse and Nana while Trachgirl & I rode medical transport to ensure a safe trip. The joy and ear-to-ear smiles on our arrival back to the home playroom were priceless.

Within a couple days I returned to the hospital for Trachboy’s next follow-up bronk. The docs were thrilled that the repair had held. He did not require any dilation of the area in any follow-up bronk post-op.

Trachgirl was another story altogether. The ENT fellow had explained to me that the usual course post-op was that things look amazing on bronk #1, then bronk#2 is usually when they scratch their head and wonder why they put in all the effort. This was the case for Trachgirl whose airway had swollen back to the narrow pinhole she had had pre-op. With balloon dilation, they were able to open up her airway to a better size and she returned weekly for another month to continue the process of opening the subglottis. The appointments were then spread out to every two weeks and dilation continued until about 2.5 months later when they determined they had gotten the result they were going to get with her.

Several months later, my house became a home of sounds and giggles, words and some phrases. By just before their second birthday, both twins had found their voice and begun to use phrases with their signs to communicate. Since that time, communication has been mostly by voice- quieter than most young children their age, but quite a miraculous blessing considering their start.

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”…

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