Week 266: Swallow it whole

Our first week of syringe-free existence was maybe even more amazing than I had imagined. After getting all of Lemon's new pills, I stopped at Walgreen's on the way home to get a pill organizer. Yes, your read that sentence correctly, I stopped at a pharmacy on the way home from the pharmacy. Because we fill all our prescriptions at the children's hospital, which has the advantages of being covered by our insurance, close to Papa Bear's office, and staffed by generally competent people. While technically covered by our insurance, our local Walgreen's gets a lower mark for convenience and a downright abysmal grade for average staff competence. But, they do get an A+ for carrying  everything else that you might need besides medicine. Anyhow, I digress.

Lemon is totally enamored of his pill organizer. The thrill of being able to swallow pills is still fresh. And it has little doors that you can open by pushing a button, blue for morning and purple for evening. Plus, it's a good opportunity to enforce concepts like "What day is it today?" and "What time of day is it?" You'd be amazed how easy it is to lose the thread of a week if you only get queried about it every 12 hours, so every interaction with the box has a sense of suspense. You never know what day might come next.






















And no syringes. I can't even tell you. I should go back and find some of my old pictures of our stacks of syringes, but back in our heyday I think we were routinely doing 10 syringes a day. That's 10 syringes to load with stuff, 10 syringes to connect, disconnect, pull the plunger out of, wash, dry, reassemble, and refill, over and over again. Now, while I'm cooking dinner, Papa Bear sort of wanders around, standing vaguely between the stove, the refrigerator, and the utensil drawer, with his hands at his sides, wondering what it is that he's supposed to be doing. And the mornings are so smooth. No more trying to convince someone to sit still, lift his shirt, and cooperate. Just the old, "Hey, what day is it today? Well, what day was it yesterday? Does that have any relation to what day it might be today, and if so, what?" And then press the button, take a swig of water, and out the door. Heaven, straight up.

Lest a week should go by without a call from the school nurse, she gave me a holler on Friday. It was one of those "I don't want you to be alarmed, and I want you to know that we take head injuries very seriously" type of calls. Meaning Lemon had decided in his typical fashion to leave some aspect of the climbing structure on the playground without fully accounting for the effects of gravity, and taken a pretty good hit to the bridge of his nose. Aside from a nice scrape he seems none the worse for wear.









Other than that, I did a little racing on Sunday morning. It was a glorious morning for running, and it's funny how just a quick trip to a town a couple of counties over can feel like a grand adventure! I really should get out more.

Week 265: Impact hammer

Just in case we thought that balancing elementary school and CF would be easy street, the second week of the school year put us in our place. First of all, on Wednesday we had our much-anticipated visit at the CF clinic, which meant that I had to keep Lemon out of school for the day. As expected, the random pulmonologist was essentially a neutral force--she listened to Lemon's lungs, said that he sounded great, asked if I had any questions, and left. Our dietitian was sort of shocked by Lemon's weight gain, and agreed that since he is now in the 92nd percentile for BMI, we can back down even further on the tube feeds. So, now we're down to 2.5 cartons of formula plus some DuoCal overnight. I did not want to give up the DuoCal because I feel like it somehow results in better weight gain for Lemon than an equivalent number of formula calories. I don't really have any evidence for this feeling, other than the fact that Lemon has gained something like 7 or 8 lb since we introduced it, but I also like having it on hand for when he is sick and we have to take the volume of his feeds down. Anyhow, to go from 4 cartons of formula per day to 2.5 over 6 months feels like a tremendous advance.

We also made progress on project pill--that is, switching all of Lemon's medications over to pill form now that he is such an adept pill swallower. There was a ranitidine pill available in the same dose as Lemon was getting with the liquid, so that was a straightforward substitution. After consulting with GI, it was decided that we could give Lemon the smallest available ursodiol pill, which is a little bit of an increase in terms of dose per unit weight but still well within the dosing range. The upshot of all of this is that 1) Papa Bear and I will no longer have to spend half our lives washing syringes and 2) we won't have to mess around with Lemon's button and extensions and whatnot in the morning anymore. It doesn't sound like much, but this is really huge for us, and for Lemon--now he can feel more like a regular kid, who just takes a few pills in the morning rather than having someone lift up his shirt, connect a tube to him, and pump stuff in.

Just to keep things interesting, Lemon and Lime both contracted a beginning-of-the-school-year cough, which appears to be something of a widespread and time-honored tradition in our school district. With Lime, of course, we can just sort of let things ride, but with Lemon, we have to intervene a bit. I picked him up from school early on Thursday to do extra therapy, and even with that he coughed to the point of puking during the night Thursday night, but then seemed fine Friday morning. Friday mid-day I got a call asking me to pick him up at school because he was sick, but he came home, took a nap, and seemed totally fine afterwards, and not coughing much, so I chalked it up to exhaustion/dehydration/hunger from the adventures of the previous night. I did an extra round of therapy on Friday afternoon, too, even though he seemed pretty much OK. Then Friday night, he coughed almost as much as Thursday night, and with the same results. Blech. So during the night Friday night I decided that we'd better start Cayston on Saturday, because he was clearly sick. But, he seemed so well on Saturday that I couldn't bring myself to start it. And indeed from then on he's seemed basically fine, almost no cough at all and the formula staying where it belongs.

All this makes me think I really need a new metric to decide when to intervene with antibiotics. My metric used to be coughing through the night with puking. But, he did that two nights running and seems (fingers crossed) to have kicked this without antibiotics. So, had I followed my first instinct to start Cayston on Saturday, we would have done two weeks of it for no reason at all. I feel like I need some kind of dip-stick or meter that he could breathe into that would tell me if the problem was being caused by bacteria or not. I don't second-guess my decision to treat H. flu aggressively back in June, but that was a much easier call, we were all sick and on antibiotics. But some of the previous things where we attributed his recovery to Cayston--were those really bacterial? Or would they have cleared up without intervention? There's no way to know, and it feels so primitive to be shooting in the dark like this. I don't want to intervene when it's not necessary, and I want to intervene in the most effective way possible when it is. The fact that we can't distinguish between the two in this day and age is beyond frustrating.

Week 264: Hedgie

We have ourselves a kindergartener! I am pleased to report that the first week of school went more smoothly than I had imagined. We had no official enzyme plan in place on the first day, so I just tucked a big bottle of pills into my pocket on our way to school and handed them to the teacher with the following detailed instructions: "Two for snack, three for lunch." And that was that. As far as I have been able to gather from the 90 seconds of conversation we've managed since then, there is a now school nurse. Her name might be Heather, although I'm not sure. It is possible that Nurse Heather may give our classroom teacher a form to document the administration of medication. I don't believe that this has happened yet. And also there may be rules about it. But hey. Is Lemon getting his enzymes when he is supposed to? By all accounts, yes, and his digestion seems to be working as normally as it ever does, which is evidence that things are happening according to plan.

One of my worries when Lemon started school was that he wouldn't eat anything at lunch time and be a wreck by the end of the day every day. And, I've been pleasantly surprised in that respect. While he doesn't eat anything that would normally be considered a lunch, he does eat something every day. He reliably drinks his whole juice box, which is a good start, and then he also usually consumes something on the order of half a string cheese, a vanilla wafer, and half a grape. It doesn't sound like much, but honestly it's way more than I expected for the first week. Also, he spontaneously commented to me that one of the things that he liked best about school was "how they have such great food for lunch." I asked if he meant the food that was in his lunch box. He said yes. Then I asked him if he had any idea how the food got in there every day. He said the school put it there. Thanks a lot, kid.

We live walking distance from our elementary school, and it has been really fantastic to be able to walk him to and from school every day. I had not anticipated how much I would like that--both the time walking with him, and the fact that it is SOOO convenient. I remember when we first moved here, when he was 6 months old, I would push him in the stroller on a walk around the block and tell him, "Some day you will go to school here." And now we are there. Wow.

What actually transpires at school remains something of an open question, as Lemon is not terribly forthcoming about the whole thing. His teacher posts lots of happy pictures of everyone on the school's app, and he is in a good mood at the end of the day, and I think I'm fine to just take that for what it is.

Lime sailed through the transition to the 3-year-old classroom at preschool. And, I have to say, he really rather likes having his afternoons at home with just him and the nanny with no one beating him up or competing for her attention. Speaking of the nanny, on the first day of school she announced her intention to quit, so I am launching into a search for her replacement now. It's great timing to find someone new (HAHAHAHA) because over the next 8 weeks I believe Papa Bear and I have 8 out-of-town trips between us. Plus the ongoing adaptations to the new school and schedule and whatnot. Kids love change. Anyhow, we've rolled through child care crises before so I'm sure somehow we'll roll through this one too. But ugh. Until the nanny announced her intention to quit I was planning to have Lime do 4K at his same preschool and be home in the afternoons. Now, I'm thinking I might be kind of done with arranging in-home child care, and that I will just send him to a full-day 4K program when the time comes. We shall see.

Not wanting to go to long before having a CF-related opportunity to miss school, Lemon has his quarterly clinic visit on Wednesday morning. I had been vaguely looking forward to it, or at least not dreading it, since I do like to have his progress assessed, and we have a few questions for the team this time around, mostly about which of his medications we can switch over to pills now that he is such an amazing pill swallower. But, I just got a call from the clinic on Friday telling me that our nurse practitioner had a family emergency, so instead of her we are seeing Dr. Random Pulmonologist. Now, admittedly, I have never met this particular Dr. Random Pulmonologist before, but my previous experiences with other members of this class have not left me with very high expectations, so the visit might be a big waste of time. Sigh. But, of course, rescheduling with the the nurse practitioner isn't possible unless I want to wait until December, which is when we are due for our next visit anyhow. So, we'll just go in with low expectations and hope that somehow they are exceeded.

Week 263: Teenage dream

Wow. We definitely got maximum mileage out of the last week of summer. At the beginning of the week, we were still in Lake Geneva with Grandma and Grandpa. While there, we took the kids out to dinner at restaurants twice and lived to tell the tale (barely). We came back here to Madison on Wednesday afternoon, and enjoyed one last day in Madison before the grandparents flew back to New York on Friday morning. We all had a great time and hopefully they will be back to see us soon. Luckily/miraculously, whatever cough Lemon had managed to resolve on its own, with just one or two extra sessions on the vest to help clear it out. Phew.

We had two fairly normal family days on Friday and Saturday, after Grandma and Grandpa left. Then early Sunday morning I left the house to go to the airport for a (very) quick trip to New York for a cousin's wedding. It still strikes me as a bit ridiculous/decadent to go to New York for less than 24 hours, but I did really want to go to the wedding. I've missed the last 3 cousin weddings due to variously being too pregnant, having the kids be either too young or too sick for me to travel, or just living too far away to travel to them easily. So this wedding was really four weddings worth of family celebrations in one for me. And oh my, I had forgotten just how easy it is to travel solo compared to traveling with the whole entourage! It was great to see so many people that I've known my whole life but not seen for so many years, even if it was just for one evening, and to be there for a really joyous wedding. Then this morning I got up at the crack of dawn to fly back to Wisconsin, and here I am.






























Kindergarten starts tomorrow. I still don't quite believe it, but in just under 12 hours I will be dropping Lemon off for his first day. After all that advance planning and meeting the teacher and everything, do we have a plan in place for enzymes yet? Thanks for asking, and no, no we don't, or at least not that I know about. I'm just going to bring a bottle of them with me when I go to drop Lemon off, and we'll see what the story is. Anyhow, both kids are in solid form for their first days: Lemon drew all over his arm and face with a purple marker while I was away, although luckily I was able to get about 60% of it off in the bath tub this evening, so he will only be lightly stripey when he meets his new friends. Lime, meanwhile, did some sort of new gymnastic maneuver in his bed early this morning that resulted in him hitting his face on some aspect of the bed frame, leaving a black eye that has his left eye almost completely swollen shut. So, yes, everyone will know right away that we are a Quality Household where things are Totally Under Control. We strive for accuracy in first impressions.