Monday, December 31, 2018


let me tell you the story of a girl who entered the hospital in near critical condition.

she made an appointment with her doctor trusting her body + the feeling of being ‘off’. no alarming symptoms, or presentation of ‘sick’ symptoms she is keen on being aware of.

at this appointment it became evident her lungs were functioning at the lowest level they had in 29 years + she was under-oxygenating during sleep. information gathered from both tests were grounds for a hospital admission alone + together needed to be addressed immediately.

though unprepared with plans for her toddler, lack of supplies, mentally noting this would most likely mean Christmas inpatient (for the second year in a row), she complied and walked into the hospital, stalwartly, for a two week admission.

 Christmas Day in the hospital 2017

she became acutely  aware of how critical her oxygenation status seemed to be with the first nights testing. results showing under-oxygenation 96% of the night (six hours twenty four minutes) with her brain receiving 3.1% (twelve minutes) of sleep with correct oxygen status. this explains undeniable headaches every morning, difficulty waking from sleep + ‘brain fog’ throughout the day.

confused with thoughts of ‘how could i not have noticed’ consumed her brain. she remembered from a childhood appointment the analogy of ‘boiling a frog’...

if you throw the frog into a pot of boiling water, it’s going to jump out immediately.
if you put a frog into a pot of cold water + slowly turn up the temperature to boiling, it’s body will make adjustments to the small changes and not notice.

just as the water temperature is slowly turned up, the lung function of someone with cystic fibrosis can slowly be turned down the individual might not be noticing the changes occurring in small increments. same analogy can be used for oxygenation. not a feeling of sudden shortness of breath occurring, but the struggle slowly infesting it’s way in.

this girl experiencing a feeling of betrayal from her body. a ‘short’ seven weeks prior having completed another hospital admission + since continuing absolute compliance with treatments at home. feelings of guilt rush in, she knows she shouldn’t have thoughts like that of her own body. no one knows better than her how hard her body works every.single.minute to keep her alive, to allow her to ‘show up’ to things, all the while fighting cystic fibrosis which 24/7 is attempting to destroy her body. she is so very grateful for the fight her body puts in daily to allow her these things.

the girl experiences disappointment + yet another reminder that no matter how hard she can work and can plan; CF will do what it wants.

this girl experiences fear. a few days before this, the CF Community suffering a heartbreaking moment a notable fighter gained her wings. the Cyster was younger and healthier than she was. it was a sucker punch to the gut when she saw the news and a new sucker punch at the reminding fear that things can happen rapidly with CF, and again, CF will do what it wants.

but as mentioned before, she walked stalwartly into the hospital ready to fight the good fight + call in reinforcements from IV antibiotics, poundings and treatments every fours hours from respiratory therapists, the brains of geniuses + nurses handling all her care...besides the effort which solely would have to come from her. 

in the moment she heard the news at her appointment nothing becomes more important than accepting and stepping up. the quick switch of the mind that in this moment, nothing is more important than showing up for the battle directly in front of you. if you ever want any future plans to happen, you must do this first. all long term goals are brought to the forefront and used as gasoline in the fire...being an active participant of the ‘carpool pickup’ everyone whines about. cheer on the sidelines while a clump of toddlers in uniform chase around a soccer ball. to stand and watch the man she adores walk across the graduation stage. to experience the buying of a home or new car...each of those become ‘adrenaline in her veins’. she’ll do ‘whatever it takes’.

..... seven days time passes 

time to recheck numbers again. where are we? bring on the tests. only to realize no improvement has been made. her numbers have dropped yet again. ‘okay, well this test wasn’t done on the exact machine i tried when i came into the hospital’, fleeting thoughts justifying the lung function number she just heard. but knowing well enough the data shown, shows vital information + this is the information that will be used to make decisions going forth.

she practices taking selfies with her 'new look', trying to recognize herself, get more comfortable with her latest accessory. for who knows how long it will stay? FaceTime's her son with it on, who quickly adjusts to it and makes it seem less daunting, if deemed necessary to stay. of course, her husband says it's beautiful, he kisses her just the same, just as much, but says it looks like her nostrils are flared all the time. humor in everything, he helps to make things light.

her doctor is concerned and talks of altering the course of treatment, extending the stay with words, “i won’t keep you in the hospital indefinitely, the foreseeable future can’t plan a discharge date.”

word gets out among her care team of the status and they start talking positively about lung transplants and the miracles they’ve witnessed of others who have received this gift. sentences of “transplant isn’t so scary. we take care of those all the time!” said with an eager voice of encouragement.

her doctor doesn’t bring up transplant yet, but knowing her doctor came with the background and work experience with title as ‘Head of Transplant’ is reassuring to her. she knows something like that wouldn’t slip past her doctor and if it was necessary would be a topic of discussion brought up. she trusts this and shrugs off the efforts of those with eager voices, knowing those staff are hurting just as much about her numbers. they’ve spent years together now, working together in battle, and are trying to stay positive themselves with lame lung news.
..... Christmas Day passes
..... more time passes

small changes are occurring. 

people of all faiths attend their temples and offer prayers on her behalf.
a ‘group prayer’ is coordinated by the Sherman Army where at a certain date and time everyone is invited to unite in prayer; however that may look for them, for her health.

..... feelings of healing are noted.

and then it’s time to put her body through the test and reevaluate those numbers again.

she passes the 'oxygen upon exertion' test. not desaturating even one percent on her walk up and down the hallways. a big victory. oxygen upon exertion is stage two of oxygen requirements, just below requiring 'full time oxygen'. her care team thrilled.

that night she was hooked up to another machine to monitor oxygenation while sleeping. 

at this point understanding that Stage II, of oxygen depletion is 'oxygen upon exertion', she is proud of herself for overcoming Stage II. being able to reverse or recover from the damage that she had accrued. and is accepting that if she were to stay in Stage I 'sleeping with oxygen', wouldn't be a bad thing for she had already overcome something big. in fact; she has enjoyed it so much while inpatient, it would be a welcomed asset to her health regimen. remember the boiling of the frog analogy? she hadn't realized how much she was in need of the help. she'd gotten used to the constant 'struggle' she was at, and didn't recognize how deprived she actually was.

not quite believing what the doctor had to tell her that following afternoon, her results were printed out and handed to her. a concrete set of data. yes her name was on the paper and the MRN number at the top is hers. this data is really hers. the piece of paper, proving to her that her body had really done this: slept 99.9% adequately oxygenated (six hours 51 minutes 54 seconds) and only 0.1% deoxygenated (thirty seconds). her lungs and body seemed to have made a full recovery, a complete switch of where it was just fourteen days ago! this is quite unheard of. her doctor words, "i'm not quite sure how this happened, but i'm taking full credit." they exchange laughs.  

the girl of this story recognizes the effort her doctor put in to get her here. but also, knows of the effort she exerted everyday to get better, the effort her body put in, the efforts of the staff - each playing their own role to exceptional quality, and the roles of everyone outside of the hospital put in for her healing. the packages from family, friends, and strangers. cards, prayers, FaceTime calls, phone calls, religious fasting, meditation and sending healing energy, good vibes and juju towards her. everybody putting in effort in the best way they knew how. all of these combined, helped fortify the healing process. she could not have done it alone. she could not have done it without the help of her Army, the Sherman Army. she see's the angels on earth, and knows her guardian angels helped guide the way. her other cysters and fibros who have passed, didn't pass in vain, for the knowledge of the life shared through their journey educated the health care team, allowing them to take better care of her. she knows this and is infinitely grateful for their help and journey.

she is told she 'can go home.' huh? only a few days ago you said 'not to think about a discharge day', we were so far away from where we needed to be. 'yes, this is true, but today we are not. today we are right where we want to be. go home. go be with your little boy - go get your little boy.'

...and so they did.

Xx, M

1 comment:

  1. Randomly reading through this again...can't help but put a smile on my face. The pics are just so precious. Thanks for capturing the moments and sharing your story. Love you guys...