Far from the worst day.

One of our lodging guests got lost the other night trying to find our check-in office. (I still say "our" after all this time of not working for this lodging company, because it is hard to remember I do not technically work for them anymore, they so completely control our lives through Bobby's being on-call all the time.) This guest was so hopelessly lost our reservations person finally just referred them to the in-county staff so we could go physically find them if needed, and the first thing this guest told our in-county on-call person was, "this is the worst day of my life!"

Really? The worst day of your...entire life? I mean, a bad day, sure. Maybe even a worse day than other bad days. But driving around aimlessly in your nice car while on vacation, trying to locate the key to your ski condo while speaking on your fancy cell phone to people who were truly trying to help you? I think most of us can agree this man's life is an enviable one. 

Today wasn't the worst day of my life. It wasn't a great one, but it certainly wasn't the worst. 

Daniel woke up at 3am, abruptly sitting up in bed between Bobby and me and announcing in a tiny voice, "mommy? I dunna barf." I might not be able to peel myself out of bed at 7 am, but give me a three a.m. barf call and I practically levitate while scrambling out of bed. The pause between a preschooler's announcement and execution of such an event is one of the smallest time measurements known to momkind. I sat upright and said, what?! Not quite sure if I had heard correctly, but still wildly thrashing my way out from under the covers while my still foggy brain grabbed onto my wide awake body, lest it get left behind. "I dunna barf", came a tiny, breathless voice, and I realized I would not make it back with a receptacle, or even the nice absorbent sweatpants I had removed before climbing into bed that were still lying at the foot of the bed, which was my split second plan B, so I grabbed an already heaving boy and scrambled for the bathroom. We made it as far as the end of the bed. I felt the first warm splash hit my bare knees. We left a trail across the bedspread and bedroom carpet, and made it to the bathroom sink. Poor kid stood shivering in his underwear as I removed both of our soaked shirts, wiped down our legs and feet, then cleaned out the sink before the chunks went down the drain. We removed the bedspread and put it in the washer, decided the sheets were only a little barfed on so they could stay, scrubbed the biggest of the stains from the carpet, then we both bundled up and went to the boys' play room to sleep, where Daniel could barf without disturbing daddy and little brother. 

He barfed eight times over the next four hours, then tried to another few times over the next several hours, and at 7:30 I reached over to lay a comforting hand on his heaving back, hunched over his plastic barf bowl, and realized he was burning up. Sure enough, 102.8. 

At that point, I made the decision to instate the level of family isolation that kept us healthy through last winter, at least until we are all healthy, well-rested, and have fewer illnesses flying around us in Summit County. It won't be fun or easy, but we cannot keep getting sick like we have in the last eight weeks. This means no more school, no more taking kids into stores with us, lots of hand washing and floor washing and clothes washing and dog washing and this washing and that washing and everything washing. I also decided I was almost guaranteed to be vomiting myself soon, having been barfed on so many times over the last four days, and I was feeling a little queasy, so I skipped breakfast.

I tried to call the Hem-Onc clinic at Children's hospital, but the clinic was just opening, so the operator sent me to the voicemail of the clinic charge nurse who had not yet arrived. Half an hour later, I called back and got a nurse who told me under no circumstances was I to bring him all the way to Children's until after he had been assessed by a doctor closer to home. I get it. They know if the fever is from a bacterial infection, the sooner he gets bloodwork, the sooner we can know if he is neutropenic, and the sooner he gets life-saving antibiotics. For a neutropenic kid, the odds of surviving sepsis are significantly higher if antibiotics are administered within an hour of the fever spiking above 101 degrees. So I took him in to the local ER, where we sat and waited at least an hour before they even started getting the supplies around to access his port. Of course they weren't successful, they couldn't get blood return, but could force saline into it, although I could tell it was pushing hard. They traumatized Daniel for fifteen minutes, turning him this way and that, stretching his arms over his head, telling him to cough, wiggling the needle in his chest, before deciding to try to push fresh heparin into his port, hoping a small clot was keeping it from getting blood return and could be dissolved. It didn't work, and by this point I was nearly beside myself, because it was already three hours since I had first noticed Daniel's fever, and he still hadn't even had blood drawn to determine if he was neutropenic. The only thing keeping me from going straight-up Momzilla on them was that I was reasonably sure this fever was viral, not bacterial, given the barfing, and that his counts had been very high only four days earlier. I finally calmly asked if they could please abandon the port access attempt and draw from a peripheral IV in his arm, which was less than ideal, because Children's greatly prefers blood cultures to come from the port, since the port is the biggest culprit for the source of infection and if so, the bacteria will be most likely to grow in the cultures if the blood comes from the port. But at least some blood was drawn to culture. 

The nurse came back in the room after taking the vials to the lab, pushed saline into his unused port, flushing away the heparin they had in it, and walked away. "She is going to get 100:1 heparin", I thought. "She knows they need a stonger solution than what they just had in it to last him three and a half weeks until his next access." He needs his port filled with heparin, an anti-clotting agent, to keep blood clots out of his port between accesses. I didn't want to be Momzilla (well, I really did, but was practicing breathing and reminding myself that they had already recognized us from our last visit, and we would probably be making many more visits, so play it cool, sis), so I didn't tell her how to do her job in front of the other nurse and the doctor still in the room. I opened my mouth several times to remind her, but the above reasons still applied, so I decided I'd wait until the last moment before deaccess and see if she was actually going to do it, and maybe she would hep lock it and I was doubting her for nothing. 

The doctor left, then had a thought, so she poked her head back into our room. "You mentioned he is still fighting a cold. He keeps desatting to the high eighties when he is falls asleep. He sounds okay, but we'll give him oxygen, and we should do a chest x-ray to make sure his lungs are clear, in case that is where his fever is coming from. I'll go call radiology now." 

"Wait!" I said, thinking of all the scans he has already had, needing convinced he really required another one on so small a suspicion. "I am thinking we may need to go down to Children's anyway, since we never got blood out of his port, and they seem to really prefer a port culture."

At my elbow, at that moment, as I was frantically trying to decide whether I was being a terrible mother and killing my kid if he didn't get an immediate chest x-ray, the nurse reached over, peeled off Daniel's port dressing, he reached for my hand, and she popped the port out of his chest as I cheered for his bravery. Exactly two seconds later, I remembered I was going to remind her to be sure to hep lock it. 

"Ahem...so...we are definitely going to Children's after we leave here", I told the doctor in a flash of inspiration. Because we had to, now. I wasn't eager to ask them to try to reaccess Daniel, the failed access he had just been deaccessed from had been traumatic enough. "I will ask them what they think about the x-ray, and get it there if needed." 

They had started a fluid bolus, but I wanted to get on the road, so I told them since we would be at Children's anyway they may want to give him fluids there, too. So as soon as Daniel's CBC and CMP were done, he was pronounced healthy enough to be released, and we knew he wasn't neutropenic (his ANC had, however, dropped from 4,900 Friday to 1,300 Tuesday, so if it continues that trend, he will be neutropenic soon), unhooked the bolus and released us based mostly on our promise to follow up the same day at Children's.

Then it got complicated. 

I called the Hem-Onc clinic from the local ER parking lot, waited for a call back while I filled the car with gas and drove home, and the nurse who returned my call told me I did not need to come down for cultures, since his counts were low, but not critical. He would still have some ability to fight on his own if the cultures were positive.  So I told her about not having seen his port be flushed with heparin. I admitted I had not made a stink about it, had not even mentioned it, because I was pretty sure it wouldn't be a problem for us to just come to the clinic at Children's and do all the things that had not been completed during the ER visit: port cultures, further diagnostics, and most importantly, the heparin. And that's when she got a little short with me, and told me she had sent us to our local ER that morning because they were busy after the three day MLK weekend, so I needed to call the local ER back and ask them to verify if they had or had not hep locked him, and if not, take him back to them to reaccess him and push heparin into his port. So I gathered all my courage, practiced my lines a few times lest I sound as stupid as I felt, called the local ER, eventually got ahold of our nurse, and she verified that I hadn't been seeing things- she had only saline flushed, and had not used any heparin afterward. She didn't offer any information on whether that had been on purpose or a mere oversight. I felt like such an absolute heel after not having said anything in the moment. She put me on hold for a small eternity, then came back on to tell me they could reaccess, but it would require me to check him in again through the ER- admit, paperwork, discharge, the whole bit.

Now, it really didn't mean much to me personally, because we are still on Medicaid, so unlike if we hadn't been, it wouldn't cost us an enormous second copay to check into the ER the second time in a day. But we do try to treat Medicaid as our own insurance, as we would if we were paying, and from that angle, it seemed ridiculous to go in for another expensive ER admit just so they could finish the job they hadn't the first time. Not to mention I had little confidence in the abilities of the local ER to get the needle inserted into Daniel's port in such a way that things could go in and out without more trauma to him. We have had dozens of seamless, effortless port accesses at Children's. Bobby, home to return Alex to me so he could work more efficiently, got caught up on the day's story, and his head almost exploded over the thought of taking Daniel back to the local ER, risking new bacteria being introduced in his port if they were not confident doing port accesses. He convinced me to call Children's again and ask if we could come in, just for a quick port access and heparin flush, and I got a different nurse who told me to come on in. So I loaded Daniel into the car again, and just as we were leaving, Alex awoke in Bobby's truck, saw me, realized his mommy was abandoning him yet again, and fell apart. Since Alex was the first one to get this bug after having played on the floor at Children's Hospital on Friday, we weren't about to take him in to any more public places, so Bobby decided his work wasn't that pressing and offered to take Daniel by himself, immediately rethought that, then offered to drive us all down to Denver, where he and Alex could just hang out in the car together while Daniel and I went upstairs to the clinic. 

Just as we were getting to the east side of Denver, the first nurse, the one who had told us not to come down, called me, and she sounded...ticked off. I beat her to the punch and said, "I know you told us not to come down, but the local ER told us it would be another admit, paperwork, the whole thing if we came in there, so we decided it would be just as much trouble to drive to Denver where it's a clinic visit and we know it will be done right." 

I didn't have time to throw in there that she was the only nurse who seemed to have a problem with it, the others had seemed quite accommodating and had assured me they could fit us in, before she started talking. "I just spoke to the doctor and she did not make it sound like that AT ALL. I just went for my lunch break, and while I was gone she left me three messages wondering where you were. If you come here, now we are going to have to do fluids and a chest x-ray here too. How close are you? Can you turn around and go back to your own ER? Like I already told you, we are too busy for him here, that is why I told you to go to your local ER." 

"We are on Floyd Hill, almost to the east side of Denver?" I squeaked, feeling a little crushed. I recognized her name. This nurse was normally so incredibly cheerful and sweet, I thought she genuinely loved us as much as we genuinely love her. 

She sighed. "Well, then I guess you may as well just keep driving this way, and we'll have to try to deal with him when you get here." 

Bobby's head came even closer to exploding. Once we arrived, Bobby dropped Daniel and me off at the hospital's front door. It was at this point I realized that I had been on my way into the house for Daniel's shoes, which he refused to put on before leaving for Denver, when Bobby decided to come with us. I simply changed course at that point and buckled Alex in, climbed into the passenger's seat, he got in the driver's seat, and we left without the shoes. So I hoisted Daniel's 33 pounds onto my hip, fought with him and eventually won on him wearing a mask, then we slinked up to the clinic, my head low and my tail between my legs, and as we were checking in, I asked the receptionist if we should go down to the emergency department instead to spare the already overwhelmed clinic staff. She asked, and they assured her they had a room ready and our arrival was not a big deal. Everybody was their usual level of professional, and assured me over and over that of course I was welcome there, they totally understood, these things are why they are there every weekday doing their jobs.   

It fell to the nurse I had annoyed earlier to access Daniel. Naturally. Before she bustled in, though, we got to visit with Daniel's personal oncologist, who was motherly, reassuring, wouldn't let me apologize for anything, and knows us pretty well by now. She listened to his lungs and decided an x-ray was unnecessary. One of the fellows also stopped in and decided that since we were there and would be accessed anyway, there was no downside to giving him fluids, since he had just started holding liquid down again, but all he needed was a thirty minute bolus. Bobby sent me goofy pictures of Alex clowning around in the car as they waited outside for us to finish. 

The moment the nurse I had been speakng to all day walked in, I realized I didn't recognize her after all, have never met her, and all my hurt and confusion over having so thoroughly exasperated our beloved Nurse Sunshine to the point of being uncharacteristically harsh evaporated. I immediately took all the blame, apologizing profusely to this tall frowning woman, saying I knew I had been the source of all the communication breakdowns, and was so sorry we were there. She immediately got all soothing, too, and said it was okay, she was sorry if she had sounded a little frustrated earlier, and to just put this day behind me. They had had 49 infusions that day in their approximately ten infusion rooms and two bays, and it had obviously been a day for both of us. 

She accessed Daniel quickly and easily, and got zero blood return. She didn't act like it was a problem, since her saline flush went in easily, so she hooked him up to the bag of fluids and left us. Our oncologist came back bearing a card with step-by-step instructions for our local ER on port accessing protocol and fever protocol, should we need to visit the local ER again. They properly hep-locked and deaccessed Daniel's port after we had been there for about an hour and a half, then we ran down to the pharmacy on our way out to pick up a prescription refill...and waited. And waited. And waited. With Daniel on my hip, which pretty much locked into its position and refused to move. We finally got our prescription, I took Daniel to the bathroom, helped him potty and wash his hands without ever letting his bare feet touch the floor (impressive, right?) and on my way through the lobby, called Bobby to drive to the front door to pick us up, because Daniel's weight was doubling each moment I carried him. 

I went outside and sat on a bench to save my arms and hip. My phone rang. Bobby said, "We have another little problem. The car's batteries are dead." Since he had never gotten out of the car after parking it, just found a drive through, gotten food, then sat in the car with Alex, eating and playing for the next two hours, the headlights never shut off and the battery quickly drained.

I picked up Daniel-made-of-lead, (did I mention he was wearing slippery pants?) walked over and asked the valet guys what generally happened in these situations, and they sent me to security to request a curtesy boost. The guy at the security desk told me the person in charge of jump starting cars (who know they offered this service?!) was busy, but would get to us as soon as possible. 

At this point, it was becoming obvious that my own rising nausea, having sat heavily in my stomach all day, was accompanied by light headedness and weakness and swirling stars upon sudden movement, exactly as one might feel after not having eaten since the previous evening. I happen to be at a point in my monthly cycle where I frequently feel waves of dizziness and nausea (woman troubles. Complicating life since forever), which really complicated the whole expecting-to-get-sick-any-moment thing. I stumbled/carried Daniel to the car and cautiously nibbled on a congealed Wendy's cheeseburger Bobby had gotten for me hours earlier, thinking that if I hurled it later, at least it wasn't food I actually liked and it would symbolize a bizarre full circle to me; after all, it was a vomited Wendy's cheeseburger that started this whole cancer journey. Daniel was relatively healthy until the night Bobby was too hungry and shaky after his oilfield shift to wait for me to prepare real food, so he brought home cheeseburgers, and Daniel, who had been an increasingly finicky eater for the last two months, wolfed down almost two of them. Several hours later, in the dark, he sat up crying, then threw up an impressive amount of cheeseburger all over Bobby's bare chest and the comforter. We threw the whole thing in the washer (not Bobby. We threw him in the shower), and I was still picking dehydrated bits of hamburger and pickle out of the washer and dryer two months later when Daniel was diagnosed after he went from one sickness to another, and never did feel great again. 

An hour and a half later, it was dark. The boys were having a fine time climbing all over the car's interior. Andy the dog was roaming the top deck of the parking garage peeing in/rolling in/eating snow. Security finally pulled up and helped us jump start our vehicle, and we were off.  

On the way home, I finally had the chance to reflect on the way the tiniest mistakes can snowball. Did it start with the bungled port access, or with my neglecting to mention the heparin lock? Actually, it probably started with taking Alex with us to the hospital on Friday for Daniel's chemo. He might have picked something up we wouldn't have brought home with us if he hadn't been practically licking the clinic floor. But we also laughed about the comedy of errors the whole day had been, and mocked the guest from several days earlier: "This has been the worst day of my life!" We said in high-pitched voices. Because we were together, moving westward toward home through Denver rush hour, two loved little boys chattering in the back seat about how we had broken and fixed our car. If you have ever gotten a phone call that a loved one has died, you cannot help but be thankful for each day that is not as bad as that one. If you have ever heard the words, "you/your loved one has cancer", each day that ends with togetherness is a good one. If you think about the possibilities that lie ahead of you for the day to get much, much worse, you realize today is all you have, you aren't owed anything, and sometimes this is as good as it gets. 

As we passed under a sheer rock wall on the way home, we passed three or four smaller cars crippled by running over several small boulders that had fallen onto the road. Flat tires, dented bumpers on cars too low to clear them. As Bobby hit the brakes, anticipating more, we clattered over freshly fallen rocks, but all the big ones had already been hit and pushed off the road by other cars. We let our gasps out with a simultaneous relieved whoosh, realizing it could have easily been us. While I have a problem thanking fate or higher power for sparing us something others were not spared from, as if they deserved their bad fortune while we were given preferential treatment, We did have to wonder if the time spent waiting for jumper cables in the Children's Hospital parking garage, or driving more slowly because of the resulting rush hour drive home might have been the difference between hitting or not hitting those rocks. We also wondered aloud if the drivers out of their cars in the chilly night along the interstate, circling their cars assessing the damage, were muttering to themselves, "This is the worst day of my life."