The tapestry of the life of a medically complex family

Archive for October, 2011

Halloween 2011


Home Nursing

This morning I went to Starbucks and met a new potential nurse. I opened the interview with what I really want: overnight nursing on the weekend. Nurse didn’t run.
Nurse is old[er than me by 10+ years]. Nurse has been a nurse only a few years, has no pedi and no trach experience. Nurse took the agency’s trach course but admits feeling wholly untrained to manage trachs- welcome to the world of homecare: untrained, inexperienced, warm bodies with a nursing license.
I’m hoping this nurse will be trainable. I’m hoping this nurse will be reliable. I’m hoping this nurse will, at least, not be “harmful”. Even at the 2 patient rate, it’s the most we can hope for.
In a week and a half, this nurse will enter my house and begin training to care for a child with a trach- correction: 2 children with trachs. This nurse will hopefully be tolerable enough to endure the invasion of what would otherwise be my private home. Hope with me that I finally have 7 possible nights of sleep in a week- for the first time in 5years. And that my son adjusts to yet another transition in his PDD-NOS life. Especially hope with me that I am able to continue to maintain my children’s safety overnight with the additional staff. Hope for a responsive nurse who monitors and does no harm.

Baseline at Basekamp, 10-23-2011

DATESTAMP: 10-23-2011

Happy Mole Day. %P

Meds across the Ward:
Pulmicort, Hypertonic Saline  5% or 3%,  Albuterol PRN,  Combi nebs PRN, Atrovent PRN, Miralax,  Nexium, Singulair [x2 now], Vitamin D, Ferrous Sulfate (Iron), Multi-vite compound, OXYGEN 1/2Lpm continuous [T, week 3]

TRACHS [change]:  Tav  3.5 Neo [Mon];  Adrien  4.0 Neo Shiley [Mon]

Scheduled nebs per day: 10

Average nebs per day (past week): 14

Nurse shifts (last week): Overnight: 5; Day: 4; Evening: 2; Full days alone: 2

Oximeters: 3 in use this week; monitoring at mealtimes

Oxygen tanks: Liquid: 2 lge., 40% Tav, 80% Adrien

Ambu bags: 2, 1 in nursery & 1 for travel

Back up trachs, suction catheter, HME locations: “nursery”, “study” & “kitchen”

Doctor appointments scheduled this week: NONE planned yet- amazingly. But I won’t count on it- have to follow-up from Friday’s…

OT: 2x

PT: 1x

SLP: 0


Nights requiring oxygen past week: 7 + one night 2L Tav ; o Adrien

“i” for isolation

The “I” in illness is isolation, and the crucial letters in wellness are “we”.
- Author unknown

Man do I ever feel this quote on the weekends. The weekends are the longest day of the week for me. Yes, I know, it is technically more than one day but, without nursing, Friday night at 10p to Sunday night at 11p seem to run all together. 49 hours, one day.

Typically this time is spent between two rooms in my home. This time is spent doing the medical treatments, interventions and activities needed to keep my kids going- breathing. The two rooms are the rooms easiest/possible to cool with air conditioning in the summer, that are not littered with back up medical supplies, and are readily & adequately heated in the winter. They are the rooms where all things medical are carried out- from trach care to nutrition to nebulizer treatments & oxygen therapy.

The front room is multi-purpose. We call it “the nursery” or “playroom”. It is the space that defends my kids against the heat of the summer, the inclement wet weather, the diseases of the passerby. It is our haven and our prison. Much joy is celebrated in this room each day; children waking healthy & happy, puzzles or castles built, “horses” ridden. It is also the room from which my family watches the world go on outside us. The kids rarely long for participation- knowing little about what it holds- but I see those who are well and long for the day my family can walk among them.

It is a RARE occasion that we get outside on a weekend. I have no capacity to care for the weed patch that would otherwise be a yard. The driveway is too much of a hill to provide a safe place for balance bikes. To walk from home, we travel downhill. The start of a walk may be supportive in getting us going but the hill to return is ever too much for my children with breathing & physical weaknesses. With 105 pounds of children, add to that an oxygen tank and suction machine, use of a stroller is not manageable alone. Now that the weather is finally cool, we have use of the deck and I try to get them out there for basketball & time on the glider at least once between meds and meals.

As I write this, their nebs are finishing. I need to head back to the next procedure to keep them going on this longest day.

Bite in the A$$

It’s clear that sometimes writing a blog can come back to haunt you. People change the names of their children, change privacy settings, edit, revise, hold back in their honesty. I don’t want any of that here.

I won’t share anything that will knowingly harm my children in their future. I will write about their challenges and experiences only as it might help another- that someone might stumble on my blog, feeling the fear or uncertainty about a procedure or adventure, and maybe find some encouragement from one of us who has gone before. It is why I read the blogs of others- to see their experience & know I am not alone.

The “not alone” part is also why I write about the pain & uncertainty of parenting my kids. It isn’t all pretty. It isn’t all easy. And I KNOW I am not alone because I read the blogs of others who suffer these moments of uncertainty & struggle. The painful posts serve their purpose for me as well: they release the pressure that builds from the act of parenting at the boiling point. To be honest, a typical day here is around 200 degrees- it’s no wonder things boil over on occasion.

Strong emotion, the pain & the joy, are the easiest for me to write about. Writing a post to explain myself, to overcome the fear of another post surfacing to bite me when read by those who care, those are the hard ones. If I can just press “Publish”, I can get back on this horse. I am doing it because it is important to me.

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.


Get every new post delivered to your Inbox.

Join 65 other followers