Friday, November 6, 2015

25 Days of Lillian ( day 6) A little bit of her "medical" picture

CLD Chronic Lung Disease
CHD Congenital Heart Defect
PDA Hole in the heart
VSD hole in the heart
PFO hole in the heart
Coarc of the aorta
Trisomy 2p
Terminal deletion 4q - chromosome anomalies, that are entertwined
VUR vesicoureteral reflux (reflux in kidneys)
GERD (stomach reflux)
BPP brachial plexus palsy
CD ciliary dyskinesia
FTT failure to thrive
Feeding intolerance
PE tubes
T tubes
DD developemental delay
hydronephrosis (fluid around kidneys)
pulmonary hypertension (high blood pressure in the lungs)
cleft palate
thinning white matter in the brain
hypotonic (low tone)
blood transfusions
sensory issues

This is a list of most of the things Lillian is or has been diagnosed with.  Some of them are resolved, but most of them are what we deal with in her life. You know when you take your child for their well child visits and that giant list of things you get to say no to?   I get to mark yes on most all of them.


PEG tube
multiple sets of ear tubes
multiple bronchoscopies..too many to give you a number
adenoids removed
chest tubes
3 ostomy closures
cleft palate repair
2nd palate surgery
She has been in surgery so many times I don't keep track of the number. I never have any type of comfort level when leaving my child in the hands of a surgeon. All I can do is pray.

Twice for pneumonia, once including pleural effusion and requiring a chest tube
4 times for severe respiratory viruses plus add in some strep pneumo and cdiff
mulitple times after operations

Procedures outside of surgery...tests upon tests, CT's, MRI's, XRAYS, ultrasounds, echos, ekgs, PFTS, again, things I can't even list because they are too numerous.

I've met more than my fair share of doctors.

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