A one-woman man

Hi, dear ones! Hope your weekend was great. Our was, for the most part. We were visited by Daniel and Alex's godparents, Uncle Leroy and Aunt Mary, and Aunt Marci, who they picked up on the way out. The cuddles were abundant. The weather did not cooperate to allow us to spend much time outdoors, and neither did Daniel's mood, but he did take a shine to Aunt Marci and for the first time in a long time, actually enjoyed being read to, even joining in with sound effects on his favorite stories like he used to. The kid is such a one-friend man. He is not necessarily a social butterfly, but he will choose one person and shower them with giggles and all of his sweetness, and demand them and nobody else. One just has to wait one's turn around here, because eventually everyone gets to be his Person, but it's a moving target who it will be. Lately his dad has not been his person, which has daddy a little miffed. But other times it is me being pushed away as he reaches for his dad. Sigh. What goes on in that head?

We stopped his steroids Friday. By now, we are beginning to see a few rays of sunshine. On Saturday, he played for about ten minutes with Baron, the three year old who spent a few hours at our house as his mama was in the hospital giving birth to his little brother. Poor Baron was rather confused at his complete lack of interest and frequent crying, but quickly brushed it off and began playing, so I nonchalantly moved Daniel down to the floor, where he did not want to play himself, but did start handing Baron toys to play with for him. I guess vicarious playtime is all he could manage. But it was still better than his usual adamant refusal to even try to do anything but sit, cry, ask to nurse, eat cheese and watch episode after episode of Curious George. 

On Sunday, we girls took Alex and left to do a little second-hand store browsing. I found a few shirts that were somewhat nursing-friendly without having too gaping of necklines, which allowed me to throw out a few I had been attempting to wear in spite of the state of them, not even good enough for Goodwill, since most of them had been procured there in the first place many years ago. When we got back, Daniel was nearly beside himself because I had gone missing, so he and I sat and cuddled while he calmed down. As he was cuddled on my lap, calm and nursing, I noticed his pulse hammering against me and began timing it. Over the next two hours, it was consistently between 180 and 200. His temp was 100.2. We began taking it every few minutes and tracked it up to 100.8 before I finally decided to call in and talk to the oncologist at Children's. He had been shaky all day, but I attributed that to withdrawal from the steroids, and wondered if it could also be to blame for his fever and racing pulse. Before the doctor called me back, it had climbed to over 101, and we knew we had to take him in- 101 is the cut-off after which an emergency room visit is no longer optional. (Due to his steroids being anti-inflammatory, a fever of 101 is equal to a much higher fever in normal people, and due to them being immune-compromising, the odds of a fever being caused by a bacterial infection is much higher, so every fever is cause for big alarm.) 

Because of his high heartrate, the oncologist would not let us drive him down to Childrens, wanting him to be seen within the hour, so we rushed around, packing a suitcase for our potential hospital stay, took Marci, left Leroy and Mary home to do a bit of shopping and food prep that they had offered to do for us, and headed for our local ER, deciding to try the smaller hospital close to our house instead of the big University hospital on the other side of town. Smaller ER, and we are usually high priority there so we get to bypass the germy waiting room, blowing past all of the pinkeye, ear infections, and sprained wrists and being escorted back to our room immediately. They even took full neutropenic precautions, gowns and masks, which we greatly appreciated. 

The oncologist's only concern about us using a smaller hospital was that they would not be as familiar with accessing his port, and maybe it was just a fluke, but she was right. They were unable to access it. We had, in the frenzy, forgotten to put numbing cream on it, but in the past when we have forgotten, he has not acted like it was painful. Our nurse was visibly nervous about accessing it, and when she did insert the needle through his skin and into the port, he cried. And then she proceeded to try for the next half hour to either draw blood out or push heparin in, and neither worked. She was a nit traumatized by his crying, but positive she had placed the needle between the three bumps on the port, it was in the right spot, and she had called to Children's to confirm the right length of needle, so as I lay beside Daniel talking and singing to him, trying to keep him calm as he wailed, they readjusted him trying to get the needle to move just enough that it wasn't blocked, to no avail. I finally told them that we truly did not mind if they would rather start an IV in his arm, and she did not pass go. Removed the port access and within minutes, had accessed a vein on his hand and drew labs. Apparently his last dose of chemo really knocked him back, because his ANC was only 550, so he was only a little bit above being neutropenic, but it was high enough that they did not see the need to send us to Children's to be admitted. 

They gave him tylenol, which I cannot do at home lest it mask a fever, and fluids, and over the course of the next five hours, monitored. By 1 am, his heart rate had come down to 148 and his fever was down to 99.7, so they let us go home and continue monitoring him there. Bobby, Marci and Alex had gone home earlier, leaving Daniel and me there, so Bobby and Leroy drove back to pick us up, we got home and went to bed about 2:30 am, and at 7:30, everyone was up and preparing to drive back to Kansas, the weekend of fun over.

I actually feel like this was a big milestone for us. An emergency room visit that did not end in being admitted. We are really getting better! 

He spent the day yesterday getting incrementally more happy. There were a lot of meltdowns and a lot of requests for cheese, but a few times the cheese got nibbled on and then left lying on the arm of the recliner instead of stuffed down immediately. Mid afternoon, I sat him in front of his toys and we "crashed" toy cars, and he giggled, the most amazing sound after not having heard it for a month. Of course, I was supposed to do the playing, he only wanted to watch, but eventually he even knocked a few cars off of his little wooden parking garage Grandpa Kevin built for them, and giggled. That night, I put him in the tub, and on a whim, climbed in with him and drove cars around the edge of the tub, letting them "crash" into the water. And suddenly, instead of crying, he began giggling like he used to. And eventually, began crawling around in the tub, driving his little monster truck up my legs, over my stomach, onto the edge of the tub, around the tub, and then crashing it into the water, which was apparently hilarious. His dad came into the bathroom to hear what this amazing, beautiful sound might be, and Daniel instantly became almost hysterical, crying and yelling at him to go away. Sigh. At least the mood swings are starting to swing up as well as down. I just wish he would have allowed his dad to experience that moment with us. It was the medicine I needed. His dad needs a dose of it, too. I imagine his need to reject people has everything to do with his need to feel in control of the situations he can control, and if his dad had been the one to organically lead him into playing, he would have been his play mate and I would have been the one forcefully rejected.

And this: some of you have been asking what you can do for us. Well. I do not always know how to answer this. Your friendship is enough. Plus, I fear if I just suggest specific things, my suggestions will be so highly effective that nobody will think they are optional and will just jump all over them. But as I was lying in bed this morning before both babies were awake, I was thinking of items I would just simply procure if I had time and/or were willing to spend the money on them. And please know the money that people have sent us is earmarked for just such things as these, and if nobody jumps on them, I will not hesitate to spend it on them. But my mom keeps telling me that this person, or that one, has asked her if there is anything we need, want, desire, think would be helpful, etc. So. This is not a hint or request, but if you are one who is asking this question, here is my list of random items that I think might be useful, given our current challenges.

-Candied applesauce (just want to try it, since he thinks regular applesauce is too bland, but I wish he would eat it, since it's binding, to help stop the ex(crement)plosions. You know the kind- the mennonites make it in gallons for weddings and funerals. We don't need gallons!!)

-Banana muffins (low fiber, low sugar, small, so they can be car and doctor's office food. I'm assuming banana muffins might have the same binding effect as bananas?)

-Freezer meals that have strong, bold flavors that also contain low-fiber, binding starches such as white rice or pasta. He had an adventuresome palate before this, rejecting most bland toddler food in favor of adult meals (his most enthusiastic meal to date meal is baked salmon, sweet potato and green salad with ranch dressing, not exactly a poor man's palate, that one...) and now that chemo is frying his taste buds, he is even less interested in bland foods. Which is a challenge, given the state of his bowels these days.

-Banatrol (this is the most effective thing we have found so far to control the diarrhea.)

-DoTerra essential oil, Serenity blend. This seems to help calm him. I rub it on his feet to help him fall asleep. Contact Kayla Fisher, I believe she has a wholesale hookup with this one. (Update- this one's claimed! You folks work fast! Thanks, Amy!)

-Mobility toys (ie- ride-in cars that encourage pushing with his feet) Now that it is spring, surely someone is selling something like this at a garage sale for a little bit-o-nothin'. Do not, I repeat, do not buy this brand new! 

-Nursing shirts that allow access to both sides simultaneously while maintaining some small amount of dignity, if dignity is even possible considering I am tandem nursing in waiting rooms, on park benches, and single nursing while doing such activities as grocery shopping and eating fast food. They need to be long and loose enough to at least mostly cover my butt, since I wear a lot of yoga-type pants and these are super revealing of the badonk, the derierre, the junk-in-the-trunk with a shorter shirt. (Ah, there is that class you all know and love.) I would like to actually sew a few, maybe, in a loose, split-in-the-middle style so I don't have to decide which to reaveal to the world-ridiculous cleavage or post-partum belly. Something with this concept, but with sleeves:
#1..., #2..., #3...It kinda seems like someone with an hour to spare and a pile of thrift store shirts to mutilate and reassemble might be able to pull this off pretty easily. If someone is feeling crafty, has lots of time, and loves to sew, contact my mom Sandi. She can find you some supplies. Of course, buying new is always an option, but I've never worn a $40 shirt in my life. The thought makes me hyperventilate a little.

-Cloth diaper covers LIKE Blueberry brand (I say like, because that is an expensive brand.) In spite of the chemo pee and poop, I would eventually like to get back to cloth. It is just cheaper. And I scored a whole bunch of soakers/inserts for about $0.40 apiece, as opposed to the $5 or more they usually are, so I plan to throw them out when I get done instead of sell or give them away, just in case any bacterial or chemo residue is left in them. But I feel like I could sterilize the cover, if itdidn't have layers of padding permanently attached inside, enough to resell later. I did sew a bunch before Alex was born, but Daniel is a little too big for them- they will fit Alex for the next year or so. Note- i might have better access to these cheap and secondhand up here in Northern Colorado than anyone else does. I just include it here in case anyone spots some. (If any of you who have medical training or experience can make an educated guess as to how well toxic pee washes out of things or could potentially contaminate the rest of our laundry, let me know. I'm willing to scrap this idea if it's not in my family's best interest! Is dilution the solution to polution, or not in this case?)
-pee pads for beds, recliners, carseats, etc. Doesn't matter if disposible or not.
-and, purely frivolous, but something we wouldn't turn down if someone was feeling indulgent...a yearly pass to one Denver attraction. I have no idea what these cost, and we aren't picky- zoo, museum, aquarium, botanical gardens...just something we can take him to on trips down to Denver so the entire trip can be more of an outing instead of just a no-fun fly down and back trip for a no-fun procedure.