Week 253: Marbles lost

Anyone who has lived with a very young child knows that periodically, they develop an obsession about some particular object, and become distraught when they cannot find that object. I get that. I have done the whole thing of searching the entire house for the particular vehicle, the specific stuffed animal, the blanket with a monster face on it, and so forth. I may not always comprehend the attachment, but I am generally supportive. I liked to think that my support was fairly unconditional. However, I have learned this week that it has its limits.




Allow me to introduce you to Lime's latest obsession. In case it is not clear from the picture, this object of obsession consists of 4 marbles (3 plastic, 1 glass) which are held in a small Lego piece that I believe was once the domed top of a little space ship but in its current deployment is held with the open side up, like a spoon. This collection of objects, it seems, must be close to hand at all times. However, the hand that it is close to is attached to a person who still trips over his own feet approximately 600 times per day, causing the marbles to roll in all possible directions at high velocity. This is followed by heartbroken cries of "I can't find my balls!" It is sort of hilarious the first time, I grant you, but I've definitely reached the point of wanting to throw the whole apparatus out the window.

In other news, our strategy of flat-out bribing Lemon to learn how to swallow pills has been a success. We put up a chart to keep track of every time Lemon successfully swallowed a TicTac, with the promise that if he filled the whole chart, he would get a remote controlled car. After a certain amount of resistance (it is important to maintain one's dignity, after all), he got it figured out and is now swallowing not just TicTacs but real enzyme pills as well. In fact, today at food school he swallowed 4 of them, no problem, without me even being in the room with him. Now, we are rapidly reaching an inflection point where he is starting to resist taking enzymes with applesauce, and is asking to do them with water.

After almost 5 years of carrying small containers of apple sauce every time we leave the house, I cannot tell you how liberating it feels to know that as long as I have the enzymes, and we can find water, my child can eat. No more discovering months-old apple sauce forgotten in some bag or the trunk of the car. No more realizing that we've forgotten a spoon and improvising something with a piece of foil or a container lid. No more realizing we've forgotten apple sauce and using water or yogurt or whatever comes to hand and hoping for the best. Most importantly, no more need for a teacher to give him a lot of help getting ready to eat--now when he goes to kindergarten, someone can just hand him his pills and he can do the rest. Phew!

It's hard to believe that our summer trip to the east coast is rapidly approaching. Which of course means that today I went to the post office and mailed a case of formula, a week's worth of pump bags, a canister of DuoCal, and various and sundry other CF-related supplies off to our destination. And realized that even though we're hoping to "travel light" (haha) we will still need to take the big suitcase because it's the only one with long enough internal dimensions to hold the portable IV pole. And, I need to have a conversation with Lemon about whether he will let me do manual chest PT while we're away, or whether he wants to bring his vest. Travel with CF always involves a lot of planning, but we're so excited to see all our friends back on the east coast that it will all be worth it. And, yes, I will keep saying that to myself daily until we get there.

Week 252: If you would like

For those of you who lost track, two weeks ago, Papa Bear came down with summer pneumonia, which Lemon and I also subsequently contracted. I got on doxycycline and started feeling much better pretty quickly, and we started Lemon on Cayston at the same time. Both Papa Bear and I noticed after a day or two that the Cayston didn't seem to be kicking in as quickly as usual, and Lemon was still pretty sick even after 2 or 3 days, when usually Cayston has him feeling well by then. Then, on Tuesday, we got the results of his throat culture from his clinic visit back. There amongst the "endogenous flora" and Staphylococcus aureus (which he has cultured since he was an infant), was a new name: Haemophilus influenzae.

Culturing a new bacteria is never good news, so I did what any responsible person would do. I dropped the name of this new arrival into Google. Aha. A well-known respiratory pathogen that causes (you guessed it) pneumonia. So, it seems pretty clear that this is what made us all sick (risk factors: attending preschool). Given that there was a new bug, and that Lemon was still sick, I sent a message to our nurse practitioner asking whether we should do anything else. She said that their general philosophy is that they don't treat H. flu, but that we could add an oral antibiotic "if I would like." Am I missing something here? If I would like? Yes. I insist on it. My kid with a genetic predisposition to lung infections has a documented new bug that isn't responding to our usual intervention plan. I must have new alternatives immediately. No putzing around. Why on earth aren't _you_ insisting on it? 

I managed to write back something a little more diplomatic, like "Oh yes, I think it would be good to try something additional," and we started Lemon on azithromycin that day. It was definitely the right decision, he started feeling better almost immediately, and his cough is slowly drying up. We're continuing with Cayston as well, so hopefully by the time two weeks of Cayston are done, we'll be back to baseline. But seriously. If I would like.

In other healthcare annoyances, let's talk about health savings accounts. We have one. We are fortunate enough to have enough financial resources to be able to set some aside in there and reap the benefit of spending pre-tax dollars on our various healthcare things. But man they do not make it easy to spend those dollars. Take our home pharmacy for example--that's where we get all the supplies for Lemon's tube feeds. Every month, I get a bill for a random number of dollars, usually between $10 and $200, which in some way corresponds to a number of dollars that we might owe for receiving the exact same set of supplies every month. 

Let's say I want to pay that bill with our HSA. I have to call a phone number, spell my name about eight times, explain that yes I have a different last name than the patient, and then have the person there read me a number of dollars that she thinks I owe. This number bears at best a limited relationship with the number I have on the printed bill in front of me. If I ask to pay the actual number on the actual bill that I have, I am informed that my choices are to pay my balance in full, or not. I opt for in full, and then agree to have the receipt emailed, which results in my having to spell my first and last name again several times, while trying to indicate that my middle initial comes between them in my email address. Eventually, we come to an understanding of how my name is spelled, and I hang up the phone. Moments later, the receipt arrives. Hooray!

Just kidding. The HSA people then inform us that the receipt from the provider is insufficient documentation of the expenditure. Papa Bear then has to call and get an itemized statement from the pharmacy (the statement that I have at home is of course useless because its number of dollars is not the same number of dollars that I had to pay in order to have the privilege of paying with my HSA card). The new statement arrives, but is tragically destroyed when our basement flooded this weekend (no joke). Papa Bear figures out that he can download some corresponding "explanation of benefits" forms from our MyChart account, which are convenient PDFs that he can then upload to the HSA people's website. Jinx! The EOB forms that you download are 2.1MB each, whereas the maximum file size allowed by the HSA website is 2.0MB. So, each one has to be individually saved as a lower-resolution PDF before being re-uploaded to the HSA website. 

And that is what it takes to spend $102 worth of our HSA. Just a little something to keep in mind if you hear anyone touting HSAs as the solution to all that ails the healthcare system.

Anyhow, enough of that. The kids started swimming lessons and summer camp, and love both so far. I'm hoping we got our summer health crisis out of the way early, so we can just enjoy the next few months!

  

Week 251: Pill poppers

Just to set the stage for the week's events, I remind you that about 10 days ago, Papa Bear came down with a case of summer pneumonia. He may or may not have caught the underlying bug from Lime, but that aspect of the situation is lost to history at this point. What is clear is that Papa Bear was diagnosed with pneumonia, got on antibiotics, and was feeling sufficiently well on Monday morning of last week that he left for 3 days at a conference in California. I'd felt less than great on Sunday afternoon, but attributed it to maybe overdoing it on a long run, and felt OK enough Monday morning when Papa Bear left. Then began a cycle of alternately feeling fine/feeling terrible. Although I didn't map the periodicity too closely, I did notice a sort of trend where I would take 600mg of ibuprofen, feel fine for 7.5 hours, and then feel awful. I also developed a cough of sorts. 

Anyhow, by Friday, Papa Bear was back, I was still feeling lousy at 8-hour intervals, and a doctor friend of mine wisely suggested that I take myself over to urgent care. I did that, and the urgent care people thought that since I was feeling awful, had a cough, and had a recent pneumonia exposure, they were willing to go straight to antibiotics, and I'm glad to report that I'm now feeling much better, even in the absence of ibuprofen. I did everything I could to minimize Lemon's exposure to the illness, but as I'm sure you can all appreciate, parenting single-handed with a productive cough is bound to result in someone getting exposed to something. And sure enough, Lemon has it now, too. We started him on Cayston at the same time as I started my antibiotics, and although he's still coughing a lot it's clear that things are going in the right direction. 

Have I mentioned that it is June?

In other news, we got the first batch of lab results back from Lemon's check-up last week, and they look really good, pretty much everything within or near the normal range. His liver enzymes are up a smidge from last time, possibly because he's grown so much that he outgrew his ursodiol dose, so we've increased that again and will follow up with the GI doctor in the fall.

Our other big adventure this week has been the start of teaching Lemon to swallow pills. He was skeptical (of course), but I do really feel like it will make his time in kindergarten so much easier if he and his teacher aren't messing around with apple sauce at every meal. We started with this video, recommended by our dietitian: 

So far, we have been practicing first with just plain water, and then trying to swallow TicTacs. The first two times we tried the TicTacs, Lemon didn't swallow them and spat them out. But, then, tonight, miracle of miracles, he swallowed one. He couldn't believe it himself. Of course, swallowing one TicTac is far from being able to swallow 3 pills, each larger than a TicTac, before every meal, but it is a start, and honestly more progress that I would have expected us to make in just 3 days, given how Lemon is about, you know, putting things in his mouth and swallowing them. 

Tomorrow I have my orientation meeting with our summer camp, which should be exciting. I somehow suspect they may have some questions about the medical form I filled out for them...

Week 250: Poop doula

I must say, in a household with someone with CF, it is a rare week when everyone EXCEPT THE CF'er has some sort of respiratory issue. Lime had it first, a cough that has taken the better part of two weeks to more or less clear up. On Tuesday, Papa Bear was not feeling well, although he thought it was because the air conditioning in his office failed and he got dehydrated. By Thursday, with a fever of 102.6, it was pretty clear that something more serious than dehydration was going on. He decided to head over to urgent care. As he was leaving, I semi-joked, "I hope it isn't summer pneumonia." Haha, it was summer pneumonia. Because whose husband gets summer pneumonia? Mine, it seems. Luckily, he got on antibiotics right away and started feeling better almost immediately. And then, I went out for a long run on Sunday, feeling OK at the start but definitely not OK at the end, and then developed a low-grade fever and a cough too. Luckily I seem to have only gotten whatever Lime had and skipped the summer pneumonia. Meanwhile, Lemon has just been skating along, having apparently built up immunity to whatever this is sometime earlier in his preschool career.

In other exciting news, I sold our changing table this week. After almost 5 years of constant use, it is ours no more. I wish the (very) pregnant person who bought it the best of success. Now, I have moved up in the world from diaper changer extraordinaire to what Papa Bear refers to as "poop doula." I do hope that as Lime gets older, my services will be called on less frequently, but it is absolutely a step in the right direction.

We had our clinic visit today. After two appointments that were basically nightmares of waiting in the exam room for people to see us, my complaints seem to have finally registered and this appointment was perfect. We actually got there earlier than I usually do for appointments, because I had remembered it as 1pm, but it was actually supposed to start at 1:15. However, no sooner had I checked in at the kiosk than the pulmonary function testing person called us in, so we got that out of the way first with no wait at all. Lemon did the test really well, an impressive feat for someone who is not yet 5. He also managed to break the scale in the PFT room by sort of leaping off it sideways while also simultaneously twisting before his feet were actually off the platform, such that the platform came off with him and crashed to the floor. But anyhow, that is life with my kid.

Speaking of scales, Lemon now weighs 44lb and is in the 83rd percentile for BMI for his age. This is up from 9th percentile when he had his G-tube placed. This appointment was actually pretty hilarious, because the care team spent the whole time sort of asking me what I did to accomplish this miracle, and looking to me to see if I thought any further changes were needed. I think we're good for now. Our main goal for the summer is just to keep packing the weight on so that Lemon is prepared for whatever new contagions he will encounter in kindergarten.

I also asked the clinic staff what they thought about the 504/IEP issue--do we need a formal plan for the school to deal with any CF-related needs? The advice I got from the clinic was no, he doesn't need one, especially for the early grades. Contrast that to the advice I've gotten from all the parents I've talked to with kids with CF or other special needs, who have all said emphatically yes, you must have one. I think I'm going to trust lived experience on this one.

I finally finished up my most recent set of articles for the CF Foundation website, so I should be able to point you all to those shortly. I've signed up to be part of our state's advocacy team--not sure what that entails yet, but I'm hoping that I will get a chance to meet with one of our national representatives later this year. I'll keep you posted on that as details emerge.

Also, how is the last day of the school year on Friday???