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.


About Mrs. B

Wife, mother, marketer--not always in that order. Lover of fine food, good company, and exceptional grammar. Mother of one former micro-preemie and one full-term monster baby. Building childhood memories in Vancouver's suburbs.
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5 Responses to Your Tax Dollars At Work

  1. we’ve been hearing about it for months but seeing it all out there like that is pretty intense. Just proves what we’ve all been saying – Ny really is a trooper, and so are her parents.

  2. Stacey and Lucy says:

    Incredible!! Wait till you have your own chart at home… Lucy had one but we did different colors and made it cute!!

  3. Juju says:

    Astounding chart, amazing journey. Keep on smilin’, Mum. You’ll be over that rainbow one of these days.

  4. Lynn Duncan says:

    Kids being treated for cancer in some areas are awarded beads for each procedure.. there are different beads/colors and they string them.. like Nyana’s list it gives us ordinary humans not going through it all a small visualization of what kids can go through.

    I like Stacey’s idea of making a fun “list”, whether it be beads or small stuffies or whatever creative way there might be. Because while that list may represent trauma, or bring back fears, it is also a list of such triumph and strength for Nyana and for you and Don and even pride for her team at the nicu and in the world as well.

    One little girl and soon.. she will get to share your outside world.. take that stroll (on wheels and later on chubby legs) by the sea wall.. meet the cats and take over your home 🙂

    She’s been winning competitions and her torch is still lit; she’s the ultimate survivor.

  5. Tasha says:

    That is really astonishing to see it laid out like that. Nyana is the toughest little girl I know!

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