The tapestry of the life of a medically complex family

So Happy Its Tuesday

Today’s another wheezy day

Reduction in their time for play

Nebs on meds on nebs again

The Vest, some care, neb number 10


Top of hill there’s feeding woes

Slower than the sloth it goes

7 hours every day-

How long can feeds go on this way?


Love and hugs and play and song

Are fit between the meds along

Bedtime pause, sing one-on-one,

Then more nebs ‘fore day is done.


Lest we rest, we do not dare,

Pause in loving complex care.

Future hopeful, but unknown,

Days are PICU in our home,


Memories are made each day

Special moments on the way

Ne’er forget to cherish each

Love each other, this do teach.




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