The tapestry of the life of a medically complex family

Archive for September, 2011

Never Clean Again

Ahhh, were this a post about a miracle cleaning solvent or a lottery win…. But, no, it’s a healthcare post.

The title is the stream of words I heard from a doc after she got off the phone with ID -Infectious Disease docs. A routine aspirate culture- intended as a “pre-” to an eventual “post-” after a new neb was added- grew out a resistant bacteria of type “ESBL”. Rather than bore you with the details, I’ll give you the punchline: my kids will be “on precautions” every time we enter a doc’s clinic or hospital for the rest of their lives. Because they picked up this bacteria at one of those clinics or hospital trips they’ll “never be clean again”. Nice, right??

We have completed one course of higher level antibiotics, are waiting for the end of the other kids’, then we get to do 3 more aspirates to see if the kids are “clear” of the bacteria- 3 negatives in a row will be “clean” but the hospitals will never treat them that way again. And every time there is an infection, we have a more limited choice of antibiotics since the ESBL trait is often picked up by EVERY bacteria once the first one develops this resistance- “superbugs”.

On top of the 21% mortality rate & the possible transfer of the characteristic to others who play together everyday, it’s been a fun couple weeks.

Baseline at Basekamp, 9-18-2011

DATESTAMP: 09-18-2011

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), Cipro [10-days], Completed Augmentin at start of week.

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

Scheduled nebs per day: 11

Average nebs per day (past week): 12

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

Oximeters: 2 in use this week

Oxygen tanks: Liquid: 2 lge., 70% Tav, 30% 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; 1 “well-child”; Cancellation of 3 flu shots.

OT: Cancellation – precautions

PT: Cancellation – precautions

SLP: Cancellation – precautions

Nights requiring oxygen past week: 1 Tav ; 1 Adrien


I see sunlight above
I rake with my numb fingers
Willing them to breach the surface
Reaching only more water

Drowning in the sea of a summer filled with illness
A fall begun with resistant infections
Of painful memories,
Of losses which tear at me although they are not mine

Why can I no longer coordinate my kicking with the reach of my hands?
Why have I released tether of the boat I was towing to shore?
My toes are in the sand,
I have no strength to push off again
As my head sinks down, I look up and wonder
If there is help up with the sun…

The silent work of children

Today has an interesting twist. About an hour ago my twins began to huddle close and whisper to each other about their play. As Keva joined them, she sat nearby & set to “work” adding her soft whisper to the group. Much of what they are playing is silent, and individual, with occasional sounds of plastic on wood or metal toy pans. An unusual & intriguing moment of childhood.


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