Monday, December 26, 2016

Week 175: Solstice

Here it is, the last post of 2016...

Our most anticipated holiday gift arrived early last week: Cayston! It comes as a 28 day supply, carefully laid out in a giant box that has to live in your refrigerator, with its own special proprietary nebulizer and power supply. It has to be given 3 times a day, and for each dose you have to mix a vial of saline with a vial of the drug, then assemble the nebulizer and put in the drug, connect it to the power supply, and then let it run for 3 or so minutes until the medication is gone. Then disassemble the nebulizer, wash the parts with soapy water, rinse them, and let them dry before the next dose. In short, it's a bit of a hassle, but a hassle we welcome. The new drug made Ezra cough a lot the first few times he did it, but now he's tolerating it really well, and even holds the mask up to his face himself while he's doing the treatment. We kept going with the oral augmentin until Saturday, when we felt like he was really inhaling all the Cayston at each dose. 

So, where are we after a month of levofloxacin, a week of augmentin + Cayston, and a couple of days of Cayston alone? Still coughing, Not a tremendous amount, not much while sleeping, not puking, but very definitely not at baseline. Both Papa Bear and I feel like we've once again hit a plateau where he is on antibiotics and feeling fine, but something is definitely still up with his lungs. This is not a comfortable feeling. The course of Cayston is 28 days so we will keep going and hope that a month of 3 treatments a day plus the inhaled antibiotics does something. If it doesn't I imagine we'll be admitted again at the end (if not sooner) for more IV's. Blech.

Focusing on the positive, we had a lovely Christmas visit from Grandma Carol and Grandpa Dudley. We did lots of holiday things together, including visiting the Christmas tree at the state capitol building, and going to a display of model trains and Lego constructions at the local botanical garden. Papa Bear made our diminutive fake Christmas tree at home look quite festive, and the kids were very excited about all their new toys. the boxes they came in, and the paper that was wrapped around them. Many more holiday photos after the end of the post for those who are interested.

It is hard to believe that we are now in the last week of 2016. What a year, on so many levels. Our plan for this last week of this wild year was to go "home," to Boston, to see all of our friends who still live there and ring in 2017 with them. I should be packing now. But, alas, CF has had other plans for us. We really did not want to cancel this trip, and debated it long and hard. But no matter which way we looked at it, the answer seemed pretty obvious. Lemon is well enough to travel in the immediate sense--he isn't too sick to fly and he wouldn't be in any immediate peril on an airplane. But he has been sick, like on serious medication and being hospitalized sick, for going on 3.5 months. If he were to catch something while traveling by pressurized contagion dispenser (ie commercial aircraft), it would be an absolute disaster for his health. He would almost certainly have to be hospitalized immediately. And if he fell ill and had to be hospitalized while we were in Boston, it would be a logistical and financial nightmare that I don't really even wish to think about. The last straw was when we discovered that Grandpa Dudley had caught bronchitis, presumably on his flight from New York to Wisconsin. So, we're staying put for now. We've cancelled so many trips at this point that we actually had to eat the cost of some of our Southwest tickets because we originally bought them a year ago, but such is life.

I think our New Year's resolution for 2017 is that we will not plan any more winter trips involving airplanes. We gave up on Thanksgiving a few years ago, and I think for now we need to set aside the trip east between Christmas and New Years. We were lucky and got away with it for a few years but by a whisker every time, and I feel like our number is up. We're going to focus our travel efforts on the warmer months--so stay tuned, Bostonians, we will be seeing you soon. Not as soon as we wanted, but soon none the less.  

Good bye, 2016. We're one year closer to a cure, for Lemon and everyone else who needs one.

Monday, December 19, 2016

Week 174: Breaking through

Another week, a few more swings of the pendulum. Uncle Jared came for a visit. We got some more snow, and it was really cold. In other words, very reminiscent of the vacations our family used to take in New Hampshire, were discussions of what to do and when to do it often devolved into second and third cups of coffee and naps. Winter perfection.

On Wednesday, we had a clinic visit that marked 6 weeks since Lemon was in the hospital. He was still at baseline, had gained another pound and a half, and was basically running laps of the exam room while I talked to the nurse practitioner. So that all seemed very promising.

As long as I was there in person, I followed up on our second opinion and our inhaled antibiotics. In response to my question about the second opinion and the form that they said they would fill out, I got some surprised looks and a sort of "Oh, did we say we'd do something? Maybe we can do something. I would check with the guy who would be the one to do something if this is something that we do, but he's at lunch right now." Excellent.

The story for the inhaled antibiotics is a bit more involved. The nurse checked their computer system and saw that the pulmonologist did put through the new prescription for the inhaled antibiotics the previous Friday. Armed with that information, I called the pharmacy again, and when they were told that the prescription was there and had been there since the previous week, magically they were able to discover it. I then called the insurance company who did a test claim and showed that it would be covered. I called the pharmacy back again, told them that it would be covered and that they could place the order any time, and they said they would call me back to schedule the delivery. Which they never did. So I called them back again, and they said that, yes, indeed, they had put through the prescription for the medication and it had cleared.  But. The medication is delivered through a special proprietary nebulizer. Which needs its own prescription. And the company wouldn't ship the medication to a new user without the nebulizer. Back on email to the clinic asking that they pulmnologist send in an additional prescription for the nebulizer. Which he did on Friday, but the pharmacy doesn't work weekends.

More calls this morning. Could we get it sent out today (reasons for urgency described below)? Well, no, they had not received a HIPAA form back from us. Checked with Papa Bear, who is the paperwork master. He had filled it out and sent it by both email and fax. More calls. We can't call the manufacturer directly (they're the ones who handle the nebulizer, not the insurance company or the pharmacy). But we called the pharmacy who called the manufacturer, who, upon being told that they had in fact received the form were magically able to see it and approve it. And now, not 25 short days since we began our quest to get this medication, it has been shipped out and should be arriving at our house tomorrow. I don't want to declare victory until it is actually in my hands, but I feel like we're getting very close!

So, in the mean time...Lemon's cough returned again. He was coughing a little on Friday, and more and more through the day on Saturday. By late afternoon Saturday it was clear that we needed to do something. Of course our plan was to try the inhaled antibiotic if the cough came back, but we didn't have it yet (see above). So we called the pulmnologist on call, who gave us a prescription for a few weeks of augmentin (being a rational human being, he didn't see the point of another round of levofloxacin). He also gave us a couple of days of prednisone to see if really whacking at the inflammation in Lemon's lungs could help. The combination of the augmentin and prednisone has at least got things back under control, but it's pretty clear that oral antibiotics are not going to kill this thing (I've lost count, but I think there's been some form of oral antibiotic in his system every week save about 4 since mid-September, and for 1.5 of those 4 he was on IV antibiotics so that doesn't exactly count as a break).

Hopefully, starting tomorrow, we can try the inhaled antibiotics and see what that does. Unfortunately, if that doesn't work, our next option is another round of IVs. We'll decide in a week or so--conveniently timed for the holidays and travel and whatnot.

In other news, we had our 6-month follow-up with the orthopedist today to check on Lemon's formerly broken arm (Remember that? Yeah, me neither.).  It healed perfectly. Glad something's going right.

Monday, December 12, 2016

Week 173: Common denominator

Lemon finished his most recent course of oral antibiotics on Friday far, so good. Still at baseline. Now, we just have to wait and see if he can sustain it. In the mean time, we continue to pursue our plans to get a second opinion at a hospital in Milwaukee, and to get Lemon access to an inhaled antibiotic to try the next time he's sick. You may feel like you have been reading about these back-up plans for several consecutive weeks without any real substantive updates. You, dear reader, are highly observant.

Here is where we are. In order to be seen in Milwaukee, we have to get prior authorization from our clinic here in Madison. That requires the clinic to fill out a form and send it to our insurance company, which they said they would do. The insurance company then gets 15 business days to consider the matter. Today, under the assumption that the form had been sent as promised, I decided to give the insurance company a call and see where we were in terms of those 15 business days. The answer to that question: zero. Zero business days into the process, because our clinic has not yet managed to send in the prior authorization form. I don't know why I should be surprised, given that when Lemon had his G-tube placed we were on the phone with the clinic the day of the surgery to get the paperwork finalized, but there you are. Zero.

Next, the inhaled antibiotic. At the moment, Lemon is being seen by a nurse practitioner, so she sent the prescription for Cayston over to the specialty care pharmacy. Because Cayston is a specialty medication, our pharmacy benefits provider won't cover it unless a pulmonologist prescribes it (nurse practitioner does not equal pulmonologist). I contacted the clinic and let them know that they either had to 1) have a pulmonologist prescribe the medication, or 2) fill out a form (delivered via fax) from our pharmacy benefits provider to be signed by the pulmonologist saying he approved of the prescription that the nurse practitioner had put in. I don't want to discuss the number of phone calls that Papa Bear and I have made to the pharmacy, the clinic, and the pharmacy benefit people to try to sort this out, or the number of times the clinic claimed to have not received a fax that the pharmacy benefit people claim to have sent. I will just provide the following update: as of this
afternoon, the pharmacy benefit people have neither their form nor a new prescription issued by the pulmonologist. On the plus side, it does sound like they will cover the medication if we could just manage to get our clinic to deliver on either option 1 or option 2.

We have a clinic visit coming up on Wednesday, and I'm sad to say that we will have to use at least some of the time to get these logistical issues taken care of. We were supposed to use the visit for something productive, like getting trained on how to use the new inhaled antibiotic, but that isn't going to be possible. I suppose I should just be grateful that things are stable enough right now that we can take the time to talk about paperwork while we're at the clinic.

Other than that, winter is in full swing here, lots of fresh snow and it's not supposed to get warmer than 10F until at least Thursday, and then more snow on Friday. Both kids are really enjoying the winter, thanks to their snow suits and some clever new mittens we got for them--the mittens have a cuff that goes right up to the elbow, so once they're on under the snowsuit they're basically impossible for even a dedicated 3-year-old to get off. Once they accept the mittens, they can actually get on with the business of riding in the sleigh, making snow angels, and (in the case of Lime) tipping over and being unable to stand back up due to the shear volume of outerwear. Next up for us is a stream of visitors and travels--Uncle Jared, then Grandma Carol and Grandpa Dudley, and then our annual trip to Boston. Fingers crossed that it all goes according to plan!

Monday, December 5, 2016

Week 172: Paper trail

Lemon's good health on the combination of levofloxacin and Flovent has continued, which we're very grateful for. The levofloxacin will come to an end on Friday (although we'll be continuing Flovent, since it seems to help), so we've been scrambling to get a new treatment plan lined up in case what ever this is comes back again. And we've been stymied so far by that well known delayer-of-things, paperwork.

And, yes, even in 2016 and even in the home state of one of the largest electronic health records companies out there (Epic), I am referring to actual physical pieces of paper. First, there is the actual physical piece of paper that our insurance company requires to be filled out to request authorization to see a doctor who is out-of-network. It's true that you can access this form as a PDF, but that doesn't do you any good because it's not a fill-able PDF, so you have to print it and then write on it (with one of those stylus-type things that contains ink). Second, there is an authorization form for the inhaled antibiotic that we want to try that has to make its way via fax from our pharmacy benefits company (which is distinct from our health insurance company) to the clinic, and then, after completion and signature, be faxed back to the pharmacy benefits company, who can then communicate their decision (with smoke signals, one assumes) to the specialty pharmacy, who will then fill the prescription, assuming all goes well.

Suffice it to say, none of this is moving fast enough. We got a call from the specialty pharmacy on Friday saying that they had received our prescription for Cayston, but that they couldn't move forward without insurance, and that our health insurance company was saying they wouldn't cover it, not because they don't agree with using it, but because they are not the pharmacy benefits company. When we called the pharmacy benefits company, they said they'd faxed the form to our clinic, but to the old fax number that they had for Lemon's former doctor who left in March. And when I asked the clinic if they'd received it, they said no, but helpfully gave me a "newer" fax number that might work better.  Sigh. So, anyhow, with any luck there is a number of phone calls and MyChart messages that will cause all this paperwork to be complete in enough time that something gets approved somewhere so that we will have something useful to do next time Lemon gets sick.

In the mean time, it is clear that winter is fully upon us, with our first (hopefully only) holiday party of the season followed immediately by our first snow. The kids were equally thrilled by both, so that did manage to knock some of chill out of my grinch heart. And, having two toddlers running around like utter maniacs at a party turns out to be a valid, socially acceptable excuse not to converse with your husband's colleagues that you see exactly once a year, at holiday parties. Both kids were really excited about the snow, Lime with a sense of wide-eyed wonder and Lemon with a sense of wild glee that his entire world had been transformed into some sort of fantasy playground. I think his ability to appreciate that there is some wisdom in keeping one's mittens on one's hands has really taken his relationship with winter to the next level!


Monday, November 28, 2016

Week 171: No Turkey

Last week, we pushed our clinic to consider some additional therapies in the hopes of finally getting Lemon back to respiratory baseline after over two months of ups, downs, and various forms of antibiotics. We still haven't heard whether our insurance will cover the inhaled antibiotic Cayston for off-label use, but they did cover Flovent (a corticosteroid inhaler) without batting and eye. And, I'm glad they did--after 48 hours on it, Lemon was cough-free for the first time in ages. Of course, he's still on levofloxacin so the big challenge will be in 10 days or so when that ends, and we see if he can finally sustain his respiratory health on his own. Fingers crossed. At the moment, the plan is to stay on Flovent until spring, and we're still looking to get a second opinion with hopefully some additional new ideas (no progress on that yet, still waiting on insurance coverage). But, for the first time in a couple of months, I feel like we may be on the right track, or at least we've found the first step onto the right track. And I am very thankful for that.

Other than that, it was a fairly quiet week, in as much as having a one year old, a three year old, and a four-day holiday weekend can be quiet. We enjoyed a fast vegetarian Thanksgiving lunch with Nona and Opa, and then found various ways to keep the kids amused and out of trouble over the next three days. We went to the indoor farmer's market, the grocery store, the children's museum, and a donut shop. And we talked to friends and family scattered across this big country that we live in. I am very thankful for all of them, and their support. It is reassuring to see that even though we don't see each other in person quite as often any more, they are still out there waiting for us at the other end of the internet.

Lime is starting to learn lots of words. As befits his Wisconsin roots, the first vehicle name that he learned was "tractor," followed in rapid succession by "bus" and "dump truck." He knows what the horse, the cow, and the sheep say. And, in true Badger style, the two foods that he can clearly ask for by name are "milk" and "cheese." All other foods he still asks for by pointing at and grunting with such vigor that his whole head turns red. And when I say all other foods, I mean exactly that. I kid you not when I say that this child was in tears the other night because I decided to limit the number of roasted Brussels sprouts that I was willing to give him as a snack before dinner. I'm thankful to have this lovely little person who appreciates food in my life!

Monday, November 21, 2016

Week 170: Off label

This week, I went to Chicago for a night to attend a conference for work. This was my first night with zero children since October of 2014. So, how did it feel to be solo in a city with no one but other grown-ups to talk to? AMAZING. I will even forgive my colleagues for stretching our work dinner until after 11pm so that my blissful night of uninterrupted sleep was only 7 hours long. I'm hoping this marks the beginning of a happy tradition whereby I get out of dodge at least once or twice a year. But, now I'm back in the thick of dodge, and we're dodging, or trying to anyhow.

Here's where things stand. Lemon's been on oral levofloxacin since a week ago Friday to fight off the resurgence of the thing that we've been fighting for two months now. Ready for something startling? Oral levofloxacin didn't work the first time we tried it against whatever this is, and it isn't really doing the trick this time, either. It's pretty much done what it did before, which is to say that it has gotten Lemon to the point where he feels fine but is still coughing a bit. Not a cough that would make anyone who doesn't know the back story think anything at all was wrong with him. But, we all know the back story here. We know enough to grasp that if he isn't absolutely, 100% at respiratory baseline and we stop the antibiotics, whatever this is will just come roaring back within a few days. So, what now?

As you might imagine, I put this question pretty directly to our care team at the CF clinic, pointing out that doing the same thing over and over again and expecting a different result is, well, you know. I asked what ideas they had to break the cycle. They came back with a couple of things. First, they want to switch Lemon's acid reducing medication from Protonix back to Zantac, because a study was presented at the most recent CF conference that kids who take proton pump inhibitors (like Protonix) have more respiratory infections. I said I was happy to try that, but that they should not forget that Lemon was on Zantac for the first 2.5 years of his life and got just as many respiratory infections as he does now, so I hardly think that will do anything.

The other idea that they had is that maybe Lemon has reflux that is causing or contributing to his problems. They know that he has already had two GI imaging studies, neither of which has shown evidence of reflux. Of course, no evidence of reflux isn't proof that there isn't any, just that it wasn't seen. But, he's also never had any symptoms that would suggest that he does have reflux. In light of all that, I'm hardly eager to do the test they have in mind, which would involve placing a sensor in Lemon's esophagus for 24 hours to measure the pH in there. Oh yeah, they put the sensor in through your nose and then tape the tube to your face and connect it to a data recorder that's in a little pack that you have to carry around while the test is going. What could be better? So, no, not unless there's a really compelling reason.

And, that was pretty much the end of the idea list. I hadn't wanted to plant the ideas that I'd had, because I wanted to hear what the clinic folks would come up with. But, being unimpressed, I wrote back to them and asked about trying another course of Flovent, as we had done back in March in response to Lemon's lungs looking inflamed during the bronchoscopy. Or, how about trying inhaled antibiotics rather than oral since oral really doesn't seem to do the trick for us?  I just heard back today that we can move forward on the process of trying these options. Both the Flovent and the inhaled antibiotic that our clinic suggested (Cayston) will be off-label for Lemon. He doesn't have asthma (Flovent) and doesn't culture Pseudomonas and is less than 6 years old (Cayston). So, those are getting routed to our insurance to see what they will agree to.

In the mean time, we are going ahead with trying to get a second opinion in Milwaukee, but more obstacles there--that hospital is out of network for us. So, I have to file a pre-approval form (filled out not by the CF clinic, but by Lemon's PCP who has literally seen him once) and then the insurance company gets 15 business days to think about it and give us a decision. So, with the holidays coming up, I would be shocked if we get that second opinion before the door closes on 2016.

With all this going on in the background, I am glad that, following the great travel debacle of 2014, we resolved not to try to travel for Thanksgiving any more. I am still sad that we will not be in Boston surrounded by family for the holiday, but the disappointment of never having planned to go pales in comparison to the disappointment of planning to go and canceling. And, I'm hoping that soon we'll have something new to be thankful for--namely, a treatment plan for Lemon that actually works.

Monday, November 14, 2016

Week 169: Aftermath

So, some politics occurred since I last wrote. We all have opinions about this, and I have gone through a gamut of emotions about it. But this is not a blog about politics, and I'm not going to get into all that here. I'm just acknowledging that it happened, and stating the obvious: we, like everyone else in the country, are going to be watching closely to see what happens next. Now back to your regularly scheduled programming. I'm sorry to report that this is going to feel like a re-run.

On Wednesday (a week to the day after the PICC was pulled), Lemon had a runny nose. Doesn't sound like an emergency, but we have been down this road altogether too many times. Thursday he started coughing, and Friday we were on the phone to the clinic. Both the CF specialists were out of the office, and unsurprisingly the pulmonologist on call decided to stick to the letter of his treatment plan and give us yet another two-week course of levofloxacin. Because that has worked so well in the past (ie, it has never cured Lemon of anything in his entire life). He's been on it for a few days now and he is certainly better than he was when he started it, but as was the case last time it seems to be getting him to about 80% better and that's it.

In summary, we need a new plan. I don't know what the new plan should be, nor should I know because I'm not a pediatric pulmonologist and I don't have a full knowledge of what all the options are, with their attendant benefits and risks. What does worry me is the fact that I don't know where this new plan will come from. Sadly, I've grown increasingly convinced over the last few months that it is not going to come from our hospital.

When Lemon first got sick in September, I suggested to our team that we needed a fundamentally new plan. That seemed to fall on deaf ears, because instead we went on our all-too-familiar journey of a few failed courses of oral antibiotics followed by a round of IV Zosyn. Now, we're heading down the exact same path again, whether it's a repeat battle with something that wasn't killed by the Zosyn or whether it's something new (opinions differ). We have been down this path entirely too many times to continue going down it and expecting a different result at the end.

So, in the coming weeks we will be looking to get Lemon seen at another CF center. The logistics seem a bit daunting but I really feel like at this point we have no choice. Lemon's doctor, whom we really trusted, left our clinic in March. They haven't been able to recruit a replacement for him yet, so right now there are just two CF specialists at our center, and they work really closely together. That's good in a way, but it doesn't really leave room for a lot of diversity of opinion or new ways of thinking, which is what we really need at this point. 

With all this going on in the background, it was great to have some fun diversions. One of my long time cycling and running buddies from Boston came out to visit, and we ran the Madison marathon together. It was my first marathon since before I was pregnant with Lime. I'd been hoping to run a personal best, but between the disruptions to my training with Lemon's recent course of IVs and the incredible headwind we had to tackle at the end of the course, it wasn't quite in the cards. Still, I missed my personal best by less than 90 seconds, and placed in the top third of my division.  Not too shabby, and enough of the pain has worn off now that I can say that it was a great time and I'm looking forward more races in the future.

I know some of you wonder where I find the time to train. Honestly, I do it because I have to. I'm no good to myself or anyone else if I don't do this kind of stuff, and after nearly four decades on the planet I know myself well enough to understand that. Some (most) weeks, it's the only "fun" activity that I have time for, but keeping up with a training program and clicking through the miles on my calendar as the count-down to the race approaches keeps me focused on something besides the day-to-day drama in our household. Being an endurance athlete is good training for being a CF caregiver too, since in both cases it takes a lot of patience and perseverance to get anywhere at all. Here's hoping both Lemon and I settle into some kind of good winter maintenance pattern soon!


Monday, November 7, 2016

Week 168: On the eve

I'm a writer by profession and by hobby. I'm not often out of words. But, tonight, I just don't feel like I have that many left. Nor can I imagine that my loyal readership has much capacity left for consuming words found on the internet after the last few months. Tomorrow is finally election day, so with any luck the flood of online words will slow a little bit, and we can all take a moment to catch our collective breaths and square our shoulders to face whatever comes next.

On Wednesday, Lemon and I went to the clinic and got the PICC pulled. I had the idea that since we had the PICC in and could do blood draws totally painlessly, it would be a good idea to do the draw for his annual labs, since he was about due anyhow. That may or may not have been such a smart idea, since the tests came back today and revealed extremely high levels of a few liver enzymes. This is probably due to the fact that he was just really sick and on IV antibiotics.  Probably. But, now we have something new to sort of keep in the back of our minds for a month or two, until we repeat the tests. And of course, that means a needle stick, which is what I was trying to spare Lemon by having the labs drawn from the PICC in the first place. Sigh. At least the PICC is gone so we can go back to regular "two boy" baths, and the skin on Lemon's arm that was under the dressing can start to recover.

The last two nights have led me to believe that this whole clocks falling back business is specifically designed to torture the parents of young kids. Getting up at 4:15 is bad enough. But 3:15 is really for the birds. And by birds I mean nocturnal owl type things. Hopefully our guys (Lime in particular) will get this sorted sooner rather than later. Either that or I think Papa Bear is actually going to follow through on his threat to set up a Pack-n-Play in the basement.

I know this election has impacted all of us, and I know a lot of you who have more capacity than I do have been personally involved in getting out the vote. I know this not just because you have posted about it on social media, or told me about it in person. I know this because I live in a swing state and I have a land line and IT HAS BEEN RINGING OFF THE HOOK EVERY NIGHT FROM 5-9PM FOR THE LAST MONTH. I do thank you sincerely and earnestly for your efforts, and I am officially done with politics for the foreseeable future. I may take a tip from my grandmother and cancel my subscription to the New York Times for a while. All I can say with certainty about tomorrow is that I'm going to get up, take care of my kids, and go vote. Afterwards, I'm going to get my hair cut.  Because I haven't quite had the time to do that in the last 9 or so months, and whatever the future holds, I will be better equipped to handle it if I am less shaggy than I am now.

See you on the other side!

Monday, October 31, 2016

Week 167: Trick or treat

As you can probably tell, since I'm awake after 7pm, we are no longer doing our every 8 hours around the clock IV routine, which is a good thing. At our clinic appointment on Wednesday, the doctor and I agreed that Lemon had made a lot of progress (including gaining back some of the weight he'd lost), but wasn't quite back to where we wanted him to be in terms of respiratory symptoms. We decided that we had better be really sure we'd beaten back whatever was causing all these problems, and the best way to achieve that was another week of IV antibiotics. However, since Lemon was doing much better, the doctor felt that we could go down to every 12 hours instead of every 8, which has made a sort of amazing difference in my energy level. It's still a big to-do, and adds a lot of stress and a bunch of extra things to do every day, but is so much more manageable.

We're getting reevaluated again this coming Wednesday, and hopefully then they'll pull the PICC out and we'll be done with IV antibiotics. I say hopefully because Lemon is, I would say, 95% better. He still is coughing just a smidge more than what I would consider his baseline, and that cough sounds a bit more productive than I would ideally like. Of course, Lime is also coughing a bit and has a runny nose, as does pretty much every other human resident of Madison at this time of year. So, we'll see.

As an aside, running IV's at home makes you acutely aware of just how much plastic is used in modern medicine. The amount of garbage we're creating is just staggering. I have always thought of myself as an environmentally conscious person (recycling, composting, etc), but no number of LED light bulbs can possibly offset the amount of waste from even one course of IVs. I feel like I'm taking out the garbage twice as often right now as I normally do. It doesn't sound like much to write it down, but all those syringes, all that packaging, the gloves, the just adds up somehow. And then there's still all the normal stuff, including one kid still in diapers and a disposable tube-feeding bag every night. Yeesh. Please be extra good about reusing things this week on my behalf! 

In the mean time, we are doing everything we can to get Lemon's life back to normal. He's back at school, with his PICC tucked away inside a long-sleeved shirt. He went trick-or-treating tonight while his evening infusion was running, with his IV pump tucked away in his backpack and tubing running from the backpack down the back of his shirt to his arm. In typical Lemon fashion, he was absolutely thrilled about wearing his Superman costume, and was delighted to go out with Papa Bear and collect candy. When he got back to the house, he and Lime were allowed to have a small sample of the loot. Lemon took about a half-dozen licks of a lollipop and ate one Milk Dud. Lime, on the other hand, took one bite of a Reese's peanut butter cup, gave me a look that clearly said, "This food has existed in the world for my entire life and you didn't tell me until now????" and stuffed the entire thing into his face. Good thing we didn't have very many trick-or-treaters at our door this year, so we have a bunch of extras.

So, that's a wrap on an October that was more exciting than I think any of us could have imagined. Fingers crossed for a more peaceful November!