Hi from the mixed bag that is Children's! Yes, here we are again. Although last time I thought we were in 7 west, this time we actually are. Last time we were apparently in 7 East, the HI-BMT (highly immunocompromised- bone marrow transplant) Unit. 7 West is a much more relaxed environment, even though gowns are required for anyone entering our room who will later enter any other room, and for any time we leave the room. But no mandatory 30 second handwashing session followed by slathering of Avaguard before being approved and rung in, no bleaching of all wheeled equipment like wagons and IV poles, no food restrictions as far as what can even come on the floor (as in, no berries because they can harbor fungus). But still, we are stuck in our room because of the pooping situation and not wanting to spread anything around, should it be spread-around-able.
I say mixed bag, because after four days at home, I was almost wishing for the orderly schedules of our week in our room on 7E. The room was thoroughly cleaned and wiped down twice a day, meals were only a phone call away for Daniel, a walk down to the cafeteria for us, and napping was highly encouraged. Plus with two adults, one adult could actually nap without fear of leaving two babies unattended. I made the discovery during my hospital stay after giving birth to Alex that a hospital can be a legitimate vacation. After B and D went home for nights, my only responsibility was bonding and caring for Alex. No laundry, cooking, cleaning...all was done for me. And now home also involves the terrifying responsibility of monitoring Daniel's physical signs for any abnormality, and the consequence of missing one is too overwhelming to even think about. Home is just where our stuff is, so a bit more convenient.
Home might actually be more homey if it weren't merely the rental of this particular year. I think back to all the places we have resided, and only the home we owned, the trailer house in Summit Cove, makes me get all nostalgic. And the farm felt like home, but in a different way. It felt like where our roots were, but it also, even with all of our improvements and updates, felt like my grandparent's home first, our home second. This house is not home. Our pictures and knick-knacks aren't out, the stains and burns in the carpets aren't ours, the smell when we walk in after a long period away isn't ours. I have been wondering lately what it might take to make a place home. Perhaps I don't know because we have never lived under one roof long enough to find out. And perhaps it is just sheer time. Or ownership. But that doesn't seem right. That seems like a first world problem.
I digress. My point is, whether a hospital room or a house, hotel or camper, home is where your family is, and in the hospital, the panic of caring for a sick little boy is taken care of for me. But eventually we are going to our house for longer and longer times. And at this point, I have spent very little time as sole caregiver to these two little boys. I don't even know if I can do it. Last night was a big test run for me, alone with them while B went home to sleep, then to work at 6am. So it isn't the strong pull of home that has me wanting to go there. Just mostly the access to outside, the ability to create my own meals, the convenience of having places to lay (or lose) the baby.
Goodness. Too many distractions while I write. I can't concentrate well enough to realize that I havent even told the story of our last few days. Just discovered that with a quick scroll up.
So our relief that Daniel was all cleaned out turned to concern as he kept overflowing his diapers. We stopped his laxative, since obviously chemo wasn't going to make him constipated, and still he kept going, and going, and going. The soiled laundry was becoming a problem. They don't make diapers to contain that mess. Then finally on Sunday night, he started passing giant globs of mucus, some of which were streaked with blood. Given the likelyhood and problematic nature of a bleed anywhere in his GI tract, we immediately called in to the hospital and talked to the on-call oncologist. She suggested that we take him into the local ER to run a few tests, but sounded like it wasnt super critical yet if he wasnt in a lot of pain. Which he had been rolling around crying, his hands clenched, but as soon as he had had his last explosion he had fallen asleep, so I asked if we could just monitor the pain overnight ourselves. She said we could, but then called right back to say she had had a look at his labs, and given his low, low platelets, she would much more strongly suggest the local ER. Could we just come down to Childrens ER instead? We asked. She didnt think we should do anything so rash just yet, our local ER could handle a C.Difficile culture (a bacteria that can overgrow with use of antibiotics and lead to major, unstoppable diarrhea), an abdominal scan, and some bloodwork. So, even though it was a new hospital to us, we drove over to Medical Center of the Rockies, who works more with Children's than our smaller hospital a few miles from the house. And spent four hours there while they ran labs and ordered a CT scan. They accessed the port on his chest for blood draws and fluids while I nursed him to keep him calm, something the ER nurse said was a new experience for him. After having given birth and coming home to two little boys, then spending almost my entire post-partum time so far in hospitals tandem feeding two ravenous boys, I have no dignity or personal space left. If my ta-tas can keep Daniel calm for procedures and vitals, I will not hesitate to get them out. I just wish they could manage to be a little less...beefy. Ridonculous. You know, if I'm going to use them as weapons against meltdowns and such. But apparently you don't make ridonculous amounts of milk without the milk makers growing out of their old facility.
When Daniel's bloodwork came back, the ER doc seemed a bit freaked out over his low numbers, his white cells, at 0.28 (normal range is 5.7-10.5) were too low to even do an ANC in their lab (absolute neutrophile count, the yardstick by which his immunity is measured, normal levels 180-540). Which, it turns out are 38, less than half of the low number of 80 they were on Friday. Nobody there felt comfortable dealing with such low numbers, so they were transferring us to Children's. They let us transfer him ourselves, since our vehicle was more of a sterile environment for him than the ambulance.
We got the Children's at 2 am, and sat in our ER room until 6, as they monitored him. Finally they determined him stable enough to assign to a room upstairs (they explained that they like to keep these kids in the ER for a while after they come in, since if they crash, they crash fast and more resources and equipment are available in the ER than in the patient rooms).
After we got to our room, we all fell asleep for about an hour. Even Daniel, who had been crying since he was cut off from breastfeeding at 2 am. Then Alex awoke, shift change, rounds...and Daniel awoke wanting food. And desperately sad and wanting to nurse. And then the meltdowns started in earnest. Hell hath no fury like a 'roided up two year old on a food binge, with a painfully distended belly that strangers keep wanting to push on, and an inflamed large intestine, denied food and his most efficient source of comfort. Hoo boy, the bawling, wailing, screaming that commenced, abated whenever he saw me just long enough for him to sign that he wanted to nurse, then resumed with a fury as soon as he realized I wasn't going to let him. Mom was being a certified jerk, and as such, she was not allowed to provide any sort of comfort if she was going to hold out on him with the boobs. Neither was his dad, because dad had no boobs. As long as I stayed out of sight, especially while nursing Alex, things went a little bit better. And by better, I mean that the wailing and hoarse screaming turned into a slightly lower pitched bawling and angry yelling. For fif. teen. long. hours. Oh, my nerves. I love the living stuff out of that boy, and I would do anything for him. I believe I have sufficiently proven this statement true by the fact that I did not lose my own composure even once. Even after having been up for 36 hours, minus a one-hour nap, the last fifteen of which sounded like an exorcism was taking place in our room, I stayed calm, encouraging, and provided as much soothing as I could, apart from my bouncing, delicious milky jugs. (This is how they are viewed by the two year old and three week old, more than by their daddy these days.) And then, the second he was approved for a regular diet, before the doctor was even out of the room, I ripped open my shirt and let him have full use of the elixir to cure all ills, the life-giving nectar, the boobs of all comfort. And instant, blessed silence.
Honestly, breast nomenclatures aside, I am struggling with this problem. I obviously did not see this coming when I chose not to wean him through my pregnancy. It was such an efficient form of comfort, supported by research and millennia of mamas nursing through toddlerhood, and it fit so well with our parenting style and lifestyle. It felt so natural, at least until the hormones created big aversions, but then it became personal and I gritted my teeth and pushed through, determined not to let my hormones win. And with his diagnosis came such relief that I had stuck it out, so I could continue to provide him with easily digestible nutrition and instant comfort through the worst of his cancer treatment, a comfort so potent that it could stop him mid-scream and put him into a calm, complacent, joyous place. It has literally been our biggest ally in this fight (although everyone else's help has been amazing, and I can't thank you enough, I am sorry it's all been trumped by one set of lactating mammaries, as far as Daniel is concerned), keeping him from even noticing some of the most upsetting situations. As soon as he latches on, I can feel his whole body relax, his clenched muscles melt, which I suspect even causes the pain, or his perception of it, to subside. When he is curled and clenched up, his fists curled into tight balls, his head smashed against his left shoulder, his knees drawn up to his chest, fifteen minutes of nursing makes him relax and sometimes even fall asleep, sparing us the need for yet more drugs. Until. (Waa-waaaw-waaaaawwww) he has to be NPO. When he isn't allowed any food by mouth, this includes breast milk. And then it becomes our kryptonite. It takes us down. Hard. There is nothing like asking for the one single thing you know will make your whole world better when you are stressed to the point of breaking by your constant hunger and raging emotions, and the person you have always trusted to meet your every need just sits there, in possession of said comfort, and refuses to give it to you. The magnitude of this betrayal is staggering. It is world-ending when your world is that of a two year old thrown into strange and terrifying circumstances.
Sometimes my husband reminds me that people just want the facts. They don't need to know how said facts made us all feel. Silly man. Of course everyone wants to know how one pair of melons (well, grapefruits) ruined everyone's day and were responsible for the river of tears we paddled upstream against all day.
So back to the facts. We were introduced to the scary prospect of Typhlitis. AKA neutropenic enterocolitis, a potential complication of leukemia and treatment thereof, with only about a 50% fatality rate. I can't imagine where their concern was coming from. Apparently a big concern is also a perforated bowel, and with his white cells and neutrophils so very low, an infection leading to this is a real concern and not to be taken lightly. His CT scan, when read by radiologists here at children's, showed no ulcerations, just thickening of the bowel walls indicating inflamed portions, which was a huge relief. As was the absence of C. Difficile, the nasty bacteria that can overgrow when antibiotics have wiped out beneficial bacteria and chemo and cancer have wiped out one's resistance to bacterial infection.
So here we are, pushing antibiotics, fluids and blood transfusions, hoping his numbers come up and he proves himself able to not shoot future meals out the leg holes in his diapers. Until those two things happen we aren't going anywhere. No clue what caused the projectile poop in the first place, most likely just another effect of one or more of his drugs.
But I have crossed a milestone of my own with this stay- my first solo night in the hospital. I know it's weird, but I am telling people I don't need any help this time. The help I've received has been amazing, not to mention it's been good girltime, but ever since his official diagnosis on April 23, I've known that eventually, I am going to become the primary caregiver to these precious little boys. We are going to spend whole days and nights together with no real back up, nobody to take the baby when Daniel cries, nobody to help me assess Daniel's health and decide it it's something to call in about or not. Someday I'm going to find myself being the chauffeur, chef, nanny, home-health worker, laundry service and housekeeper while my husband goes out and earns enough to afford my services. (Just kidding.) And. I have had no idea if I'm fooling myself that I can even do it. I had a few solo days at home and although I felt like I had a few big fails, especially in the housekeeping and dietary department, everybody stayed alive, so that was a win. But could I stay the night in the hospital with two babies, manage to actually sleep while keeping them simultaneously happy and asleep, and maintain my sanity? Turns out I can, and did. I feel pretty good about this. Daddy, meanwhile, got home about 11pm and slept a precious six hours before going to work. It was hard for him to leave us here, but I practically kicked him out the door. As mentioned before, his leaving the roadway in a moving semi truck due to lack of sleep, or crossing the center line into oncoming traffic is so not something I am in the mood to deal with right now. I would much prefer he get his sleep than have to deal with the possible consequences of him not sleeping.
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