Bacteria, part deux

Hello and welcome to the beautiful place that is Northern Colorado in the summer time. When he left, Daniel's dad predicted two things would happen – Daniel would start walking, and he would lose his hair. Both happened within one week of his leaving. The hair on top of his head finally got thin and patchy enough that I took a clipper to the rest of it, even though everywhere except the crown and back of his head was still fairly firmly rooted. It isn't completely gone, I left about a quarter inch. Just enough that it looks intentional. He looks like a beefy little shiny-skulled tough guy. As for the walking, this was starting to happen before Bobby left last Friday, but Daniel took his first unassisted steps on Tuesday. We drove down to Denver to Dr. Jeff and Christina's house to meet and play with cousins Ariel and Ahna on their way back through Denver. At some point during the day, he forgot he couldn't walk. One moment he was cruising along the couch, using it to hold himself up, then he was holding an adult's hands for dear life, then he got excited and when the adult stopped, he kept going, flailing his arms, flapping his wrists, his left hip bowing out with each staggering step, but he was walking. This was, of course, accompanied by much fanfare. Clapping, cheering, you'd think the child had just discovered the cure for cancer, not merely started walking again after four months of immobility due to cancer. Although, when you put it that way, it's still a pretty big deal. It's not like he's walking everywhere now, he still prefers crawling or walking with plenty of assistance for stability, but across the room, down the hall, across the playground, this is enough. This was also our goal of six months of physical therapy, which we have yet to even start. I called our case manager and discussed this with her, and we decided we would simply set new goals since he still is not functioning as a normal two-year-old. I am so thankful to live in a place where things like therapy are possible. Not that they wouldn't have been possible in western Kansas, but a little harder to come by.

So far Bobby says work is been good in North Dakota. He has stayed busy, which is more than some of the other drivers up there can say. He sends me pictures of the surprising beauty that is the Bakken oil field, sunrises behind oil rigs, lakes and lush green fields. I suspect he is kind of enjoying the manly life up there with the boys. Apparently the accommodations are much better up there for the drivers. A whole trailer- lounge, laundry, TV, showers, kitchen, everything a boy needs to live apart from his family.

Word is, a few jobs have been found in northern Colorado for the drivers who want to stay here. Although they are over the road regional hauling type jobs, beggars can't be choosers. At this point we will take what we can get. This company has been so good to us, allowing Bobby to take time off to attend appointments, even when unscheduled. Bobby's dispatchers know by now that he isn't a flake, so when he needs to flake they are understanding. This would not be the case in any other company we would hire on with at least for several months. It would be a rough transition. Word according to the late night social hour that is oilfield truckers and their CB radios says Halliburton has laid off a lot of crews in this area. This does not bode well for any more local work being found. Or at least not in the oil field.  We did not move to this area for the oil field, the oil field made it possible for us to move here. And now it may be time to move on. Bobby has been searching for work in the Denver area and all over the front range, and it isn't that the jobs aren't out there, it's that the jobs that are there don't pay well enough to support a family of four on one income. This is caused quite a lot of guilt on my part. I know I should not feel guilty for staying home and raising my children, but it kills me to see Bobby working such long hours so far from home while his children forget who he is. Not that it takes long when one's children are a toddler and a baby. But I feel I should be contributing somehow. I have been looking at the possibility of going to school, even though I know this is so not the time of my life to be thinking about such things. And I really don't see how I could do it without a relative close by to watch my children, because for what daycare charges we would be broke before I graduated.

Friday was clinic day. I drove us down in the morning for our 10:30 check in, feeling so very thankful that the horrible starving steroid days were behind us, because he has to be NPO for eight hours before his lumbar punctures and in the past, having a procedure scheduled for midmorning instead of first thing was cause for hours of inconsolable crying and asking for food. His current lack of appetite is heartbreaking, but it does make for calmer days when he isn't allowed to eat. Nevertheless, he was still pretty sad about not being allowed to nurse by the time our 11:30 lumbar puncture for his intrathecal injection of Methotrexate had been delayed until almost 12:30.

We entertained ourselves in the clinic room by driving cars around the bed and "accidentally" crashing them onto the floor, and watching Finding Nemo on the little portable DVD player that was given to us by "Bags of Fun", a bag of toys sponsored by local businesses and charities during our first admittance.

This was the first time I was the adult to engage him as he fell asleep. Usually Bobby holds him until he is asleep as I stand in the doorway watching but out of the way. Since I was also holding Alex, the staff was more involved with entertaining him, and as soon as they hooked the big syringe of Propofol up to his line, he grabbed it to investigate. They told him he could push the plunger in if he liked, and boy, did he like. The kid is becoming more and more engaged with his own care and procedures, and more familiar with the routines. He will call his nurses on forgetting to take his temp during vitals, show them where the blood pressure cuff goes, which finger to put the pulse oximeter on, and precisely where they should place the sphygmomanometer when listening to his lungs. He had the proudest grin as he laid himself back on the pillow, then reached over and grasped the syringe with one hand and the plunger with the other and began pushing it in. "You are how old?" His nurse laughed. And then he began to yawn and stretch, and just couldn't keep his eyes open any longer.

All three bays of the recovery room were full, so I waited in the hallway until one opened up, they brought Daniel in, and he took full advantage of the fact that it was his normal naptime and took a two hour nap. They eventually determined he was out from under the effects of Propofol and just sleeping, so they gave him his IV Vincristine and started his PEG-L-aspariginase in the recovery room. He finally woke up, and began gagging like he was going to throw up, even held the emesis basin under his chin by himself, he was so sure he was going to, but nothing came up, so I put him in his stroller and we wheeled him and the IV pole to an infusion room, a tiny closet version of the inpatient rooms, and they left us there, and no sooner did the door close behind our nurse that he threw up all over himself. Not that he had much to throw up, just a few sips of apple juice, but enough to soak all of his clothes. Then he became extremely stiff and shaky, so I tucked him into the bed, and instead of being able to comfort him like I wanted to, I had to deal with Alex, who had chosen this moment, after having alternately eaten and slept all morning, to wake up and scream his head off. And so began an extremely stressful several hours. I could see Daniel shrinking further into a ball under the covers, shaking more violently, but I couldn't do anything for him, even try to comfort him, because the instant I lay Alex down, he began screaming. Daniel was crying, shaking and moaning under his covers, and I put noisy Alex down to check on Daniel just in time to catch more barf in a towel. As I was cleaning him up, I noticed his skin taking on a bit of a splotchy purple color, like all the tiny capillaries under his skin were swollen. By this time, a nurse had come in the room, so I pointed this out to her. She took his temp, and sure enough, it was going up and his heart was racing, but his blood pressure was normal and he was not swelling up, so this was not the "normal" life threatening reaction to PEG that they monitor so closely for. They called the doctor, she stopped the infusion, ordered some tylenol, and within fifteen minutes his shaking had mostly stopped, his muscles had unclenched, and his temp was holding steady, if still elevated. They cautiously restarted his PEG, standing beside his bed with an anaphylaxis kit just in case, and monitored him visually through the rest of the infusion while I rocked and bounced Alex, feeling incredibly guilty that I could not be holding Daniel instead, not that Daniel seemed to care. Once the infusion was done, they monitored him for another hour, during which time he rallied, his fever subsided, and he became a bit happier, even daring to drink some water, which he promptly threw up. But then he wanted more, which he kept down. They drew blood cultures, since he had been running a fever, then de-accessed his port.

We escaped a little after six, the rest of the clinic quiet and dark, receptionists and other patients long gone. Since I had not eaten breakfast or lunch, and had devoured all of the snacks I had brought hours before, we stopped in the cafeteria and got a sandwich and french fries, fries being one of the very few foods Daniel will attempt to eat these days. He ate two of them, and they stayed down. I ate the rest. Inhaled, more like. Then we hit the road for home, navigating Friday evening rush hour traffic out of Denver and up I-25. The babies slept while I drove, but both awoke the moment I pulled into the driveway and loudly restarted their sad symphony. I felt the need to stress eat, but with all the distractions, even had to give up on that. I sat Daniel down in front of the TV in the hot, stuffy house and bounced, rocked,walked and jiggled Alex to no avail, the small boy was still inconsolable. He momentarily got happier when I took him outside where it was cooler, but even that didn't last long. And then, after two hours of finally almost beginning to understand why people shake their babies when my bouncing and rocking got more and more frustration-based, the tiny blessing exploded, sending a mind-blowing amount of curdled milk all over me and the recliner. It ran down me and puddled between my legs, and then I didn't dare get up, lest it run back down into the back of the chair and live there forever smelling ripe and cheesy. I sat there hoping my pants and underwear would soak it all up, even wiggled and slid around in it a little trying to mop it up with my butt and legs, feeling particularly undignified and put-upon and asking my former carefree, childless self where, exactly, we had gone wrong. Finally, my pants having reached maximum absorption, I stripped off Alex's shirt and used it to mop up the worst of the slime, put a now grinning, cooing, droopy-eyed Alex in his swing, and peeled off my soaked clothes, finally able to attend to Daniel who had been tugging on my shirt repeating, "Boo? Peeeeease?" For quite some time already. Which didn't make me feel any less guilty about neglecting him since when his nausea will allow him to nurse I make every effort to accommodate him, since he needs every bit of nutrition he can manage to keep down.

And then Marci arrived. The fact that she was coming to see us had kind of gotten lost in the chaos earlier in the day, but she showed up just as everything was calm, and we had a lovely late evening. Except that I couldn't keep my eyes open. But she watched babies and read books and played cars with Daniel while I took a badly needed shower, and pretended not to care when I couldn't find a single pair of clean comfypants to wear afterward so opted for pantslessness. And then she and Daniel went to her bed for snuggles and books, and I took a sleepy, sticky, unbathed two month old to my bed.

The next morning we did nothing much, just played with babies, watched a little netflix while pretending to fold laundry and clean house (well, I pretended. She succeeded in folding piles of laundry in such neat piles I'm pretty sure my closet felt little shivers of delight.) I was finally getting serious about getting the house clean, had almost all of the laundry washed, if not folded, when the phone rang, that unwelcome number showing on my caller ID. That number ending in 1234 has come to spell dread for us by now. It was an oncologist at Children's, calling to tell us that Daniel's cultures were growing things. Pack your stuff and come down ASAP to be admitted and start antibiotics.

So we rushed around packing. And silently cursing. Well, some of us, anyway. One of us. Fine, me. I muttered things. Mostly under my breath. I had a hospital bag still packed from last time, but Alex had grown out of all of his clothes in it, and I had taken most of my clothes out of it to wear in the absence of clean laundry, so I repacked it. We made arrangements for the neighbors to watch Andy, and hit the road for Denver, Marci following me so she could drive back to Kansas from the hospital the next day.

After our four hours in the ER, sitting and waiting for almost two hours for the doctor to find a moment in the middle of dealing with real, actual emergencies to pop in and assess him and order IV Vancomycin (antibiotic), then for it to push over an hour, then an hour of observation, we finally got up to a room about 9:30. As usual, I got the comfy but overcrowded hospital bed with two babies, and Marci got the torturously hard couch.

It appears this is the same strain of strep that we had a positive culture for last time. Since it is rare to have an identical infection twice in a row, they are suspecting his port or the line from his port into his artery may be contaminated. They drew cultures from his arm today to see if they are negative, and if they are, and subsequent cultures from his port are positive, they will probably have to yank this port out and replace it. Which isn't the worst surgery, obviously, but still invasive. His temp is staying low, and he doesn't act like he is feeling particularly awesome, but it is also two days after a pretty intense three doses of chemo. He threw up the few bites of rice cake he ate for breakfast and has not eaten, only nursed since. The worst thing about these suspected infections is the timeline. The cultures have to sit for 48 hours before they can be declared negative. So even if we are perfectly healthy and the infection is either gone or never existed, we are still at least 48 hours from being discharged. Which is unlikely, considering they will want to find the source of the bacteria this time so we don't have to keep coming back. Well...although...a more cynical person might reflect that since our last 48 hour contamination allowed them to charge our insurance another $34,000, perhaps it is somewhat profitable to keep these rooms full. Not saying that. But one of Daniel's parents likes to speculate on such things as he is driving all night through the great Bakken oilfield. Such a cynic, that one.

On that note, we also noticed that the subcutaneous shots of Cytarabine we give Daniel at home are costing our insurance $5,000 a pop. Drug dealers make all the bank.

This morning, we decided to send Marci back to Loveland for Andy, so she could take him home with her and he could spend the week at my parents. They can bring him back next week when they come up here. Mom has her six month cancer checkup (three years now) in Edwards next Monday, then she plans to spend the following week with her grandbabies.

While she was gone, the wee ones napped briefly, then I begged the activity room key off of our nurse and took Daniel to play. He found his favorite toy, a ride-in car, and promptly became dissatisfied with merely driving around the play room, so we went out into the hall and "drove" up and down the two hallways that comprise the north and south sides of our floor. Marci returned and we took turns letting him "nearly run over" our feet, which he thought was absolutely hilarious, and we thought was the best sound ever, his shrieking giggles which turned into hiccups.

He also walked his farthest distance yet today. One end of the hall to the other, only holding my hand for help balancing. (Yes, it took me so long to finish this post he has gone from walking across the room to walking the length of the hospital hallway between the third paragraph and this one. I actually started it on Monday morning before all heck broke loose.) He was so exhausted and shaky by the end he could barely stand as he clutched my legs asking to be carried. He has taken several naps today because the way he keeps overdoing it with his activity, he keeps wearing himself out and has to sleep and rally before hitting it again.

I have written myself a note to remember to call the fire station just up the street from our house tomorrow. I had a fire station tour booked for him at 1:30. He has become so obsessed with firetrucks, I called and asked if anyone might have the time to make a two year old's day and show him a real live firetruck. They were quite accommodating. But that's how it goes. Man makes plans, bacteria laughs.