Even though I know better, and I truly, deeply know that we have everything because we have each other and alive kids, I have stated a few times that this week has pretty much felt like a big suck sundae with a cherry on top.
I wrote that last blog post, published, then proofread it, then idly browsed the internet on my phone while Alex was napping beside me on the bed. When he woke up it was dark in the room, having gotten dark outside, and I was all blind from having stared at a bright screen for the last hour, so when I picked him up and scooted out of bed I did not see the snoozing dog-beast on the bedroom floor and pretty much t-boned him. Smacked into him broadside. As I was pitching over him, headed for the floor, I made a last ditch effort to not fall while holding Alex, jumped over the dog and had no time to get my foot to clear the carpet, so I came down with my entire weight, plus Alex's 20.5 lbs, on my toes. And then landed heavily on my knees. Rattled the house. Then I sat on the floor clutching my foot with one hand and Alex in the other, in too much pain to cry or curse effectively. Over the course of the evening, the toes all eventually stopped hurting except one, and that one is still swollen and refuses to be bent. I'm assuming I probably broke it. So the last two days I have been pretty much unable to wear shoes, except my extra big snowboots, and even they have been uncomfortable. Even the weight of bedsheets on it has been painful. Not that I've had to experience too many of those.
Alex and Daniel got sick. Yes, I took them out and about. Who knows where they picked it up. Could have been on any surface anywhere. I made the choice to try to have a life with the uncertain neutrophil situation, and it bit me...except not quite as feared. Daniel is affected, but not like Alex has been. I actually think it is a fairly mild case of laryngitis, mostly, and a fever, but I managed to birth a small human who inherited my childhood croup issues. His tiny little airway nearly closed off when his vocal chords became inflammed. I put him to bed about nine pm night before last, fell asleep next to him, and about eleven, I woke to what I first thought was loud snoring, but then realized was actually loud stridor. Both his inhales and exhales were loud, wheezing honks. I got up with him, dug in the crawlspace and emerged with our tote of medical supplies, located the nebulizer and albuterol and gave him a breathing treatment, which did nothing. Then I took him outside in the still, muffled night, oddly lit by the city lights reflecting off the low snow clouds, and stood holding him on the back porch to allow the cool air to soothe his vocal chords. That didn't seem to do much either, so I took him downstairs to the basement bathroom, ran the hot shower until the room was steamy, started a humidifier, and sat on the floor with him the rest of the night, watching his lips to make sure they weren't turning blue as he struggled to breathe. I was ready to take him to the ER but hoping I wouldn't have to- we just started over on our deductible, so medical visits are essentially out of pocket right now. It was light outside when we emerged, and I was feeling fairly zombified by lack of sleep, not to mention sorry for myself and stressed out about Alex's partial airway obstruction.
With daylight came slightly easier breathing, or maybe just my perception of it changed since things are less worrisome in the daylight. B left to get groceries for breakfast. When he returned, instead of cooking I left Daniel downstairs with his dad and took Alex upstairs with me to nap. We both slept for about an hour, Alex propped up over my stomach, sleeping upright to help his breathing. He woke me up by becoming noticeably worse- the gaps between his ribs and the soft spot below his throat pulling in more deeply with each wheezing breath, and although his lips were still baby-red cupid bows, the skin around them looked a little dusky. The clinic was finally open so I tried to get him an immediate appointment, but they couldnt fit him in. I eased my throbbing toe into a big, sloppy snow boot and drove him to Urgent Care. They took a look at him and told me to take him to the ER. When I tried to protest, the doctor looked at me sternly. "Do you want to take him yourself? I'll let you because he's still alert at this point. Otherwise I'll call an ambulance." Message received.
So we sat in the ER until 7 pm, when they finally decided he simply was not going to start breathing well enough to send him home, even with repeated nebulized racemic epinephrine treatments and dexamethasone. After all that epi and steroids, he was cranky but completely cranked up. I hadn't eaten at that point except for half a banana and a donut for breakfast (the donut was a treat, intended to be chased by an actual healthy breakfast, but I took that short nap instead, and then we went to Urgent Care). I barely even remember those last few hours because I was nearly on the floor. My sense of humor was nowhere to be found. We were admitted and entered in the hospital's computer exactly four minutes before the hospital kitchen closed, so I ordered food while developing tunnel vision and then pretty much just sat on my bed swaying and somewhat unresponsive instead of helping nurses wrangle a legitimately insane baby who was flopping, screaming, kicking, grabbing, rolling around and trying to climb out of his crib while they tried to hook up his pulse oximeter and get his vitals. I ate, drank some water, and realized I might live.
He slowly improved. I fashioned a carrier sling out of a bedsheet, put him in it with access to boob, and bounced and rocked until he relaxed, then nursed himself asleep. He slept extremely lightly for the first few hours, requiring me to sing and rock often to keep him from crying and scrambling out of bed every time he opened his eyes, but as soon as the epi wore off he fell into a deep sleep, accompanied by loud stridor and dropping O2 sats, so the nurses came in to put oxygen on him at the same time the respiratory therapist showed up with more racemic epi. 
Perhaps it was my lack of sleep, but whenever the respiratory therapist talked, it made me simmer. I asked if we could remove the mask and just do a blow-by treatment, since I could then nurse him and he could be completely calm while breathing it in through his nose. "No. We can not do that." I tried to sway and bounce him on my hip to calm him to get his O2 sats up. "Okay, mom. We're going to stop moving around now." It may have been my exhaustion, but everything she said sounded condescending. I was nearly beside myself. And that doesn't usually happen when we are in the hospital. I am Suzie Freaking Sunshine while we are in their care. It becomes all about the kids, I switch off my own stuff and become unflappable. Generally, I really am the most genuinely unbothered person while inpatient. I've worked in a hospital, and know that while no nurse or aid will admit to having favorite patients and parents, they do. And it greatly behooves a parent to place herself on that short list for her child's sake. I know we are not the only patients there, and far from the most emergent, but we can at least try to be the most understanding and nicest. And being the nicest usually works out well for us. They know we legitimately need something when our call light goes off, and the one or two requests we make aren't burdensome to them when we rarely ask for anything. Our nurses were obviously very busy, but they were cheerful. It was literally the first time in nine months of bouncing in and out of emergency rooms and hospitals that I developed a chip on my shoulder for a staff member. It was quite possibly my own issues at that point, but for some reason, one night in a local hospital with Alex as the patient was ten times as stressful as ten nights in Children's with Daniel as a patient. Just the whole situation. Especially the fact that this was not the oncology ward, with the best, most sterile housekeeping techniques. It was a regular hospital floor full of RSV, influenza, you name it.
They wanted to keep him a second night, but I practically dropped to my knees begging to be discharged. Daniel was at home begging for mommy, coughing and sounding hoarse, and since Alex's virus also presented with a 101.8 fever, I was fairly certain we would be needing to take Daniel down to the ER at Children's soon. Not to mention I could almost see the viruses swirling in the air around us, and unlike Children's hospital, nobody was gowning up to come in our room with our obvious need for droplet precautions, so one could be fairly certain they were coming straight from other patient rooms in which no protective gowns had been worn, either. It made me even more thankful for the precautions we have grown accustomed to on the pediatric hem-onc floor.
They reluctantly discharged us with many instructions involving keeping him calm, breathing cool, moist air, and bringing him back immediately if he developed more stridor, since this seemed to be a croup episode that was reluctant to end and his progress could reverse quickly. He developed mild stridor during the night again, but not nearly to the degree he had had the night before. By now he is doing fine. The adults and Daniel all have what he had, but our vocal chords can take a beating without squeezing our trachea shut. That's just poor baby design, if you ask me.
And Daniel's "fever" topped out at 99.8. Boom. No trip to Denver.
By the way, it is now two days after I started this post. Once I sat down and started to write, I unwound quickly, then babies woke up crying, and we all ended up in bed asleep shortly after I started it.
But that whole thing was only the sundae. There was also a cherry on top.
This ongoing work situation. Again. Always.
The oilfield trucking company B works for got two frac crews to follow around and provide sand for. This was a bit of a windfall for them after having struggled so hard for so long. In fact, just a few months ago, they laid off a whole bunch of drivers. They asked B, as a courtesy, if he wanted to be laid off as well, but he was only a few weeks from collecting a longevity bonus that was worth several months of unemployment so he declined, saying he may quit after he got the bonus. About the time he got the bonus, worked seemed to pick up again. They rehired drivers they had laid off. They hired even more. They finally convinced B to give up his truck and take a more managerial position.
Tangent: We don't love the oilfield. It's been a necessary evil to keep us afloat, but we support the need for alternative energy and less oil, and feel like we have to state that to our more progressive friends whenever we admit we work in the oilfield. We'd love to have a job we didn't feel the need to apologize for. Tangent complete.
Around the first of January, B finally started working in his new position as an on-site field coordinator. He left around 3 (either am or pm) and returned around 6, fifteen hours later. We saw him about two hours every day, as he was eating and preparing to leave, or eating and going to bed to sleep and prepare to do it again. We hung blackout shades in the spare room so he could sleep during the day and I tried to keep babies quiet for seven hours in the middle of the day. He walked 5-10 miles per shift, backing trucks in, telling drivers where to go, monitoring safety, turning in sand samples and paperwork, helping teach new hires how to unload, and lost fifteen pounds in three weeks. His pants started falling off. Then they lost their next job, so he has been home recovering for four days.
It really didn't come as a huge surprise when, as I was sitting on the ER cot wrangling a squirmy baby, B texted. "Well, it sounds like I lost my job. We lost one crew to another company, so I can work 40 hours next week with the other crew, then it sounds like we're out of work."
You'd think this would be the big setback of the day. But we've done this before. We've been told this is the end, freaked out, started looking for work, and then they've come back with some sort of counter offer. "Keep working for us, and we will try to find you some over-the-road work". "We'll send you to North Dakota for a few weeks". "We'll give you a minimum guarantee if you come work in the shop eight hours a day." And we've always come around to the fact that some money, if not enough to pay all of our bills, is still better than no money. It has been hard to make that leap into the unknown when we can stay where we are, not doing particularly well, but also not dangling over the abyss with no safety net. Not to mention we have had reason to hang on with this company because they know B is a good enough employee they will make a few sacrifices to keep him around, like allowing him to take time off for hospital stays if he really needs it. Any new employer would have no such assurances.
So now we wait. Maybe they'll lay him off, enabling us to apply for unemployment while we search for our next thing. Hopefully. We wish they'd just rip off the band-aid already, instead of tugging on it every few months or so and then sticking it back down again. Maybe they'll find something less than ideal, but better than nothing, enabling us to keep subjecting ourselves to the insanity and uncertainty of each paycheck possibly being our last. What we do know is there will be no more overtime, which is what had us slowly gaining on our finances again, seeing hope for the last three weeks that things would get better.
Not to mention they way B worked so unbelievably hard, ninety hours of night shifts one stretch without a day off, literally worked himself sick, lost all that weight because he just didnt have time to eat, just so we could take Alex to the ER and then be admitted. Because we just started over on a new deductible. And I'm sure, as anyone who is currently insured will notice, those deductibles are a killer. It completely ate up B's 118 hours of overtime he had put in the last three weeks. I only wish that number were a typo. We had actually started to think, if we could find some super cheap tickets to someplace warm, we could afford to take a short vacation the next time he got a 72 hour "weekend". I have all the $98 flights out of Denver memorized for the next two months. But no. Our vacation was exchanged for two days in a medical facility.
But even that isn't the whole cherry. Our insurance is still Kansas insurance. It is a five year old plan with lower premiums grandfathered in, so our premiums are "only" about $620/month, and we managed to get 18 months of continuation coverage when we moved back to Colorado. Our coverage officially expires in three months. Daniel now has supplemental Medicaid to cover whatever our private insurance won't, so we don't need to cough up any more payment for his actual care, so literally all we were trying to do was make it three months without Bobby, Alex, or me needing medical care, because we have to get new insurance and start over with new deductibles in three months. And we couldn't do it. So it would be one thing if we now had a year to enjoy the benefits of having already blown through Alex's deductible, taking him in for every croupy wheeze, but we only have three months until we start on another one.
And that's the cherry on top.
I know I've said it before, but it bears saying again. Adulting is for the birds.
I'm not whining. I truly am not. I'm writing this all down for myself, to record the way things are right now, so in the future, when things are better, I can read back and compare how good they are. Because we tend to remember the best of times and not the worst of times, when remembering the worst of times might help us celebrate better times. It helps us see, in hindsight, the beautiful way things worked out. And it isn't as if it couldn't get so, so much worse, and for that we are incredibly grateful. We have life. We managed, against the odds, to procure financing for a mortgage to get our monthly expenses down from what we were paying to rent, and the local housing market is insanely tight right now, so we know we could get our money back out of it if we need to. The cancer thing is managed, considering how much worse the diagnosis could be. Daniel is alive, all wiggling, giggling thirty four pounds of him, sprouting white-blonde fuzz on his head and growing out of shoes he just grew into, and that is worth everything. Everything. So many parents who have lost their babies to cancer and other horrorific diseases and accidents would gladly opt for scurvy, rickets and homelessness if it meant having them back. Nothing matters, nothing is worth complaining about when held up to the magnitude of losing a child. We are absolutely okay.
And we aren't asking for monetary help. As I told my parents the other night, discussing this, we would rather have someone help us help ourselves than outright help us. Temporary jobs, maybe. There is always someone else who needs outright help so much more than we do. While it is discouraging to literally work our butts off (wait, only B did that. Mine is definitely still there), only to lose every dime we just made on another setback, it is just that- a setback. We are still afloat. We can still buy groceries and make house payments.
We have lived below our means for the last ten years, pinching pennies and saving them for the future we wanted. While we didn't see our savings going to pediatric cancer and paying the bills because work dried up for three years, while it is incredibly discouraging sometimes to see our dreams being traded on mere survival, while the effects of those ten years of tightened belts shrinks every month our expenses exceed our income, it is there to deplete. We worked ridiculously long hours getting out of debt, put off having kids until we had a few savings, made huge sacrifices so that at some point, life could be better. And it is. It just isn't how we pictured it. We thought we would be self employed with seasonal work, and would spend winters exploring new places, giving our kids amazing adventures, climbing volcanoes and camping under unfamiliar constellations, eventually deciding if we should homeschool on the road or put them in school, in which case we would decide which beautiful locale conducive to an active, outdoor lifestyle to plant our wandering feet in permanently. So that's probably not exactly what is going to happen anymore. But we have these two precious humans, and we still have dreams. They have just been back-burnered. And are somewhat less plausible now that they are no longer anywhere close to being financed. Maybe we can salvage them eventually. Maybe this summer we can finally bust out of our faltering oilfield employment, hang out a shingle for a house painting business or something else that requires minimal overhead that can be compensated for by B's ridiculous work ethic, have the phone magically start ringing, and pick up where we left off.
But. The next time we hear someone say that anyone can get ahead, they just have to be willing to sacrifice and work hard, that one hundred hour work weeks are the path to success, that saving a little every month will finance one's dreams, we may act on an overwhelming desire to punch them in the throat.
$1.3 million, by the way. That's what we and our insurance (mostly our insurance) have paid so far to save Daniel's life. We're still keeping track. Just saying. Be insured. We weren't cancer parents either, until we were. Thank goodness we had insurance when that happened.
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