Your Tax Dollars At Work

Day 174.

In our 174 days, Nyana’s garnered herself quite an amount of attention. It would not be an exaggeration to say that on any given day, no fewer than 20 different medical professionals poke their nose in on her in some way or another. Some people just examine her and chart her numbers, others have machines or needles and run tests on her. I think I mentioned briefly once that I’ve learned that it costs, on average, about $1,500 per day to keep a micro-prem in the nursery. Not surprising, given the gauntlet she’s been running since she was born.

There’s an at-a-glance chart included with her bedside charts. I’ve been staring at this chart for weeks, sort of dumbfounded to see the course of six months all laid out like this.

Date	System	Action/ Result
Sept. 20	Respiratory	Intubated at 3 minutes of life
Sept. 20	Respiratory	BLES (bovine liquid extract surfactant) administered
Sept. 20	Respiratory	Extubated at 10 hours of life –> Biphasic 10/7
Sept. 20	Cardiovascular	Umbilical arterial catheter + umbilical venous catheter inserted
Sept. 23	Central Nervous	Head ultrasound
Sept. 24	Cardiovascular	UAC + UVC removed
Sept. 24	Cardiovascular	PICC line inserted
Sept. 28	Cardiovascular	Echo-cardiogram; Ø PDA detected
Sept. 29	Central Nervous	Head ultrasound; mineralized thala vessel noted
Oct. 01	GI	NPO (nothing by mouth): NG –> low continuous suction
Oct. 02	Respiratory	Re-intubated
Oct. 02	Heme	PRBC (packed red blood cells) transfusion, Lasix diuretic administered
Oct. 04	Respiratory	CXR (chest x-ray); Bronchopulmonary dysplasia (BPD) diagnosed
Oct. 12	Respiratory	Start DART (Dexamethasone) steroid treatment
Oct. 12	Cardiovascular	Echo-cardiogram; Ø PDA
Oct. 13	Respiratory	CXR
Oct. 18	Heme	PRBC transfusion
Oct. 22	Cardiovascular	Diuretics (hydrochlorothiazide, spironolactone) started
Oct. 23	Respiratory	BPD w/ hyper-inflation noted
Oct. 26	Respiratory	CXR. Cysts present in lungs; change to high-frequency oscillating ventilation
Oct. 27	Infection	Clinical signs of blood/urine infection noted.
Oct. 29	Infection	Trach ASP – ureaplasma (positive).
Oct. 29	Cardiovascular	Echo-cardiogram. Ø PDA; mild enlargement in left atrium noted
Oct. 29	Heme	PRBC transfusion
Nov. 01	Central Nervous	Head ultrasound; mineralized vessel noted
Nov. 02	Eye	Eye exam; immature. Follow up in 2 weeks
Nov. 16	Heme	PRBC transfusion
Nov. 18	Respiratory	CXR; Ø changes to BPD prognosis
Nov. 22	Infection	Immunization
Nov. 30	Eye	Eye exam; immature Zone 2. Follow up in 2 weeks
Nov. 30	Respiratory	CXR; Ø changes to cystic BPD noted
Nov. 30	Respiratory	Begin 2nd DART treatment (Dexamethasone steroids)
Dec. 04	Respiratory	Extubate to biphasic CPAP 10/7
Dec. 07	Fluid	Decrease SLF additives to 1g/100cc
Dec. 13	Eye	Eye exam; Stage I/II Retinopathy of Prematurity detected
Dec. 15	Central Nervous	Term head ultrasound; mineralized/cysts noted
Dec. 15	Respiratory	Biphasic 10/7 –> CPAP 6
Dec. 17	Respiratory	CPAP 6 –> biphasic 10/7
Dec. 17	Fluid	Feed duration increased to 90 minutes on pump
Dec. 17	Respiratory	CXR; no changes noted
Dec. 19	Respiratory	Biphasic 10/7 –> biphasic 8/5
Dec. 20	Respiratory	Biphasic 8/5 –> biphasic 9/6
Dec. 27	Respiratory	Biphasic 9/6 –> CPAP 6
Jan. 02	Respiratory	CPAP 6 –> CPAP 5
Jan. 04	Respiratory	CPAP 5 –> high flow nasal prongs (HFNP), 5L/m
Jan. 11	Respiratory	HFNP 5L –> CPAP 6
Jan. 11	Eye	Eye exam; Ø evidence of ROP; follow up in 4 months
Jan. 13	Fluid	Feed duration decreased to 45 minutes
Jan. 18	Respiratory	CXR; no changes noted
Jan. 21	Respiratory	CPAP 6 –> HFNP 5L
Jan. 22	Fluid	Feed duration increased to 60 minutes on pump
Jan. 25	Cardiovascular	Echo-cardiogram; no concerns noted
Jan. 25	Cardiovascular	EKG; no concerns noted
Jan 25	Ear	Hearing screen; no concerns noted
Jan. 26	Respiratory	HFNP 5L –> HFNP 7L
Jan. 26	Respiratory	HFNP 7 –> CPAP 6
Jan. 29	Respiratory	CPAP 6 –> CPAP 5
Feb. 11	Respiratory	CPAP 5 –> HFNP 6L
Feb. 22	Infection	RSV immunization
Feb. 23	Respiratory	HFNP 6L –> HFNP 5L
Feb. 28	Infection	Nasal swab sent to lab; concern of virus (negative)
Feb. 28	Respiratory	HFNP 5L –> HFNP 8L
Mar. 01	GI	Upper GI study; reflux noted
Mar. 01	Respiratory	Sweat test; Ø indication of cystic fibrosis
Mar. 02	Respiratory	HFNP 8L –> bipap w/ chloral sedative
Mar. 02	Respiratory	CXR; changes noted (zero fluid or hyperinflation noticed)

And there we have Nyana’s NICU journey in a nutshell. It was exhausting to type it all out, and it reminded me how exhausting it was to live it day by day. With each line I added, I remembered the feeling—sitting in the parent’s lounge while they gave her her first blood transfusion; walking in on her sedated on morphine during her oscillating ventilator adventure; trying not to cry when they showed me the cysts in her x-rays. I’m astounded that Don and I are still forging ahead, still tackling life head-on, still (mostly) smiling through it all.

This chart is nowhere near complete and in the next two or three weeks we’ll be adding all sorts of scariness that hasn’t been seen since the Intubation Era. I’d be lying if I said I wasn’t scared shitless about the surgery next week and what the required intubation will do to all the respiratory progress we’ve made. They continue to remind me that she’s bigger now and stronger now than she was in December when we finally got her off the vent, and the girl in me who understands logic understands completely how safe she’ll be. The Mum in me does not. But I trust the doctors, I trust the RTs, I trust that Don and I made the right decision. Here’s hoping we don’t add too many unexpected lines to that chart up there.