The tapestry of the life of a medically complex family

Archive for October, 2011

Baseline at Basekamp, 10-16-2011

DATESTAMP: 10-16-2011

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

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

Scheduled nebs per day: 11

Average nebs per day (past week): 12

Nurse shifts (last week): Overnight: 5; Day: 4; Evening: 3; Full days alone: 2

Oximeters: 2 in use this week

Oxygen tanks: Liquid: 2 lge., 70% Tav, 90% 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: 3 Complex Care; 2 “NEW” pulmonology; 2 Physician/pulmonary outreach HERE [EEK!]

OT: 2x

PT: 1x

SLP: 0

Other: Nursing agency supervisor & OUTREACH

Nights requiring oxygen past week: 7 Tav ; o Adrien

Breathing Room

We have changed pulmonologists. Our previous the twins have seen since infancy, across 2 hospitals, every 3-6 months their whole lives. He is a good man, a great doctor- but impossible for me to reach lately. He does oversee our care but there is no clarity for me on WHEN to access him, WHEN he wants us at our pedi. This man is bright and CAN be articulate- but if I balk, or hesitate on a change, he defers rather than explain. I am sad. I miss him & haven’t started with our new one yet- but I know in my head it is time to move on.

If you think the above seems more like a recommendation than a goodbye, then you are reading it correctly. He knows so much that he is terrific. But there are 2 things he doesn’t know:
1. What is wrong with Tav’s breathing?
2. I am having a near breakdown because we can’t find the answer to question 1. I cry myself to sleep. I cry while I type my blog. I cry when trying to talk to the farmer about how we need to park close to the apple trees because of the oxygen. I cry when his colleague asks me how things are going at an appointment for his sister.

It was time for this change.

Holding up their World

Sometimes I feel like Atlas- or like his significantly less beefy red-headed step sister. I stand still with the world of my children resting on my shoulders. This week while holding tightly to the globe of trachs & breathing & oxygen & complex medical coordination, my shoulders quivered & quaked and I had to take a knee to get my footing again.

While on my knee, I was able to quiet the tremors that were shaking the foundation my children rely on for their footing. I had to force myself to quiet the quake long enough to clear my mind, look at it from another perspective, and reach out for help in our medical solar system.

For now, the oceans have returned to a more normal ebb & flow. The surface has stopped quaking. My childrens’ footing, however tenuous, now has my full physical support. I am again standing, cradling their world, waiting for the next wave to hit.

First trip Apple Picking

On Tuesday we had an appointment cancelled which opened up our day to pick apples and get our Halloween pumpkins. Enjoy the view!

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Mom’s Call Schedule

Most doctors get what it is like to be “on-call”. They experience the 40 hour day common to the caring for sick children/ patients, as residents, perhaps as fellows. During the hardest of those call rotations, getting almost no sleep for 2-3 day spans. The perk docs get is that often that “call” is limited to one night/week, sometimes 2, and limited to that period in their career where they are young, eager, filled with the nervous energy to get through the crises for the weekend before crashing to recuperate Sunday night.

Being a parent of a child with complex medical needs is much like that “on-call” situation common for doctors-in-training – except without the pay and esteem of colleagues. For 5 years I have been “on call”- the 7-night/week attending of my own PICU. The “patients”, my children, have had nights of relative health but oh-so-many nights of needing 1-on-1 skilled attention. Every night of every week is “my night”. There are periods when I have had nursing for 3-4 nights per week – not unlike those doctors at hospitals throughout the country- but I am still the “on-call” back-up plan between my child in crisis and an in-patient stay.

I cannot “clock out” or take a vacation day. “Vacation” & “weekend” only apply as indicators of periods I spend alone, trying to be both mother and “medical team” to address my kids’ ongoing medical needs. Unlike docs with scheduled breaks, earned time off, holidays, my shift is 24/7, 365 days/year. Next time you feel as though you “know how it is”, “know how much I do”, think about the last time you provided medical care for more than 40000 hours without interruption. Then you might know.


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”…


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