And Alex...Daniel's nurses and doctors have seen him grow from the nine day old celebrity sibling of their newest diagnosis to the ten week old brother of the kid fast becoming a veteran. Our first admittance, he was a newborn who either slept or ate twenty two of twenty four hours a day. The second time, he still slept and ate, but also learned how to scream. Our third stay, he was tempting himself with learning to smile. And our fourth stay, he is a strapping, cooing, talking charmer one moment, and demonstrating amazing lung capacity, alerting the entire floor to his distress the next.
I scanned Daniel's records the other day for anything his care team might have "forgotten" to tell us, something I have learned through the course of several family health crises is a very informative thing to do. I did find out a few things I didn't know, just minor things related to his cancer genetics, procedures, biopsy results, port placement, etc. And discovered that half the staff thought Alex was a girl because it got put in one note field early on, probably thanks to the fabulous hand-me-down pink organic muslin swaddle blanket I wrapped him in the first night or two we were here. And future notes got copied from that one, and I didn't bother correcting people who referred to him as "her", and by now Daniel's chart is full of references to Daniel's parents and baby sister. So even those who held and exclaimed over him, and come in to see how he's grown, are occasionally surprised now that he is wearing more manly clothes.
It is amusing to see the random things that ended up in his chart. "Mother of child also reported having loose stools". I'm sure I did. But also, it was good to read it noted, the night of his diagnosis, that we were doing exceptionally well with it, and it even helped relieve a little of the mommy guilt over recently having to put Alex's demands over Daniel's by seeing the notes after almost every doctor's rounds saying "child was resting comfortably on the bed with his mother", "child was irritable and being held by his mother", "child was calm and sitting in chair with his mother", "mother reported inadequate intake of solids but frequent breastfeeding".
Next morning update: I asked a nurse last night after writing this what the culture from his arm, the control sample, was doing by now. She said the culture from his arm was positive, but the culture from his port was negative. Huh? So her opinion was that if the cultures from his port stayed negative, they probably would not yank his line. Which is good news, as far as not having to have another surgery. But also worrisome, because they were clear last time too, and it came back. The last thing we want to do is come back and do this all again. His doctor said in hindsight, they should have taken the first one more seriously and treated it more agressively instead of assuming it was a contamination from his skin (three days of vancomycin seemed fairly aggressive to me, but hey.) They are not making the same mistake this time. This time he is on a 24 hour a day vanco drip, plus multiple daily infusions of cefapime....
Aaand two days later: Interruptions. Always with the interrruptions. Go ahead and disregard the updates in this entire post. Instead of going down, his counts came up. His neutrophils were supposed to go down to practically zero, then climb back to at least 200 before they would let us leave, and this should have taken between one and two weeks. Instead, they bottomed out about 320, and instead of trending down from there, they started trending up. I have mixed feelings about this. As does his doctor. I finally got to have a long (by doctor's standards) conversation with her about our mercaptopurine schedule, and her suspicion that we may have sabotaged this cycle a little bit by allowing him to nurse as soon as an hour after his doses. With less impact to his body from the chemo comes less impact to his cancer. So the good news is, he responded well to antibiotics and his cultures started coming back clear, whether from his arm or his port. So he did not need to have his port removed. And with his rising counts, they felt confident sending us home with IV clindamycin, an antibiotic less potentially damaging to his kidneys than Vancomycin. They felt that he successfully could fight off an infection from whatever traces of bacteria was left in his body with the help of seven more days of antibiotics. So we are on an every-six-hour clindamycin schedule, with prefilled "homepumps", little bags that contain some sort of magical and mysterious mechanism that squeezes out the medicine at a predetermined rate.
This is the first time we have had to do anything with his port at home. I was nervous leaving the hospital, but they assured me that a home health nurse would meet us with the supplies upon our arrival back home, and would demonstrate how to use them, hook them to his port and run them, then unhook and push saline and heparin into his port. I was beginning to panic a bit as five o'clock, when he was due for his next dose, came and went with no nurse showing up. Finally a courier showed up with the supplies, but no nurse. After a long time on hold with the hospital and the home health company, the nurse called me, apologetic, and said she had spaced our appointment, but she would walk me through it on the phone. By this point I had read all of the instructions, so I knew what to do, and with her prompting, it really wasn't a terribly big deal, but it was a little bit disconcerting giving him the first dose of at-home IV meds with no actual training. But we bumbled our way through it. I mean, if an addict can successfully inject an intravenous substance in an ill-lit alley, it doesn't seem like it should be rocket science to do it in an existing port, no pokes required. I put a button down shirt with a pocket on him, stuffed the little bullet of medicine in the pocket, and let him play, then successfully flushed it with saline, hep locked it and felt a little more in control of this whole crazy train.
We got to spend time in the playroom this time. Last time we were there, we were in isolation and did not get to enjoy the spoils of cancer, which is the generosity of people who do their best to help these kiddos forget they are not normal. One of these things is the playrooms at the hospital. I have to hand it to the volunteers, if I stocked a playroom in which every toy touched had to be sterilized before it is touched by another child, I would not stock it with leggos, Jenga, matchbox cars, play kitchens, play shops, or games like Hi-ho Cherrio. I'd throw a bunch of great big toys out there and call ot good. But the volunteers spend their days sanitizing and resanitizing every toy touched, then returning it to it's designated spot, only to have it be picked up, played with for fifteen seconds, and then discarded in the sheer excitement of limitless toy choices.
This stay in the hospital we also were able to have casual visitors, including, since flu season is now past, kids under 13. This meant Daniel's three year old friend Baron could come visit. The two of them officially trashed the play room, and then, in an ultimate display of the sheer genius that is a child's ability to drive their parents insane, took advantage of the option to take one toy each back to the room, and each chose an identical little plastic lawnmower (of course there were two of these instrument of evil) with balls housed inside that spun when pushed and made the most unholy racket. And then chased each other around the room, the lack of textiles in the room making for the most deafening rattling and clattering. Daniel has had some sort of ailment every time these two have hung out. It started out as a fluke- he got a stomach flu a few hours after having played with Baron the first time, forcing me to call Baron's mom and apologize in advance if she ended up cleaning toddler vomit out of a rental house carpet, as I was. The next time, a few minutes before Baron walked in, Daniel went down hard with an ear infection. The next time, playtime got cancelled because he broke his leg. And after that, his attitude was terrible because he didn't feel well or was on steroids. So this time was the first time he brought his own personality, and the two boys realized they shared a love of destruction and noise. And proceeded to destroy things and make noise. Their playtime was interrupted by Daniel needing the dressing changed on his port, so both of them had to wear masks to minimize chances of infection, which neither of them loved. Daniel so rarely gets to play with other kids that when he did, he completely overdid it. So much so he was practically comatose for four hours straight after Baron and his mom and baby brother left to go back home. 
A few hours into his nap, the skies over Denver darkened, the wind kicked up, and rain began coming down in sheets, obscuring the lights of Colfax Avenue below. Then a tornado warning was relayed over the hospital intercom, and nurses burst into our room, and with no delay, shut our blinds and wheeled Daniel and his IV pole out into the hall. He slept through the entire thing. 
As this was happening, Aunt/godmama Mary was flying into Denver. The storm didn't delay her much, and Daniel had just awoken from his nap when she walked in. She had planned to come to Loveland and be my adultier adult for a few days, but instead she caught a shuttle to the hospital amd spent her evening humoring a two year old who, after having been non-mobile for four months, was suddenly trying to make up for lost time by demanding that she follow him evrywhere, admire every toy, play every one of his invented games with him.
This morning after breakfast, Daniel went for a walk in the hall, unhooked from his IV pole for the first time in three days. He wasted no time heading for the playroom to climb in a plastic push car, the all-time winner for best toy to ever grace the halls of a hospital. Well, that and a small plastic egg from the kitchen playset. The egg became his second favorite toy. Don't ask me why. The mind of a two year old is a very confusing place to everyone except it's owner. But between the car and the egg, the boy stayed entertained. And then spotted a soon-to-be friend cruising the halls in the other car (there are two of them). Simone and Daniel had fun driving back to the playroom together, then sat together and shared toys in the playroom while their moms traded war stories and took pictures of the cumulative sweet strength that is two tiny humans given a raw deal in life right out of the gate, teaching their adults how to roll with the punches and come up smiling.
No comments:
Post a Comment