Week 336: Playing possum

Nothing quite gets one's blood going on a Monday morning like one's children calling excitedly "Mama! Come quick! Something furry! In the living room! I think it's a rat!" Upon further inspection, there was something furry. Most thankfully, it was not inside the living room, but rather visible through the living room window. And, it was not a rat, but an opossum. A really, really huge opossum. We watched it, it watched us. And then we went about our respective days.

Other than that, I am thankful to report that it has been a fairly uneventful week out here on the frozen tundra. We have continued along with our manual chest PT regimen, and have another two weeks or so remaining before the repeat chest X-ray. We are just fervently hoping that Lemon does not catch something else in the mean time. The viruses are flying fast and furious in Wisconsin at the moment, so much so that the children's hospital took the precaution of banning all visitors under the age of 12 from the inpatient floors. Not exactly a comforting feeling. But, the kids still have to go to school and such so we just try to emphasize good hygiene and hope for the best. Well, that and I handed Lemon's teacher a giant 4-pack of sanitizing wipes this morning before school. We'll refer to that as active hoping.

I got Lemon on the scale again this evening just to see where things are and he seems to be holding steady for now. Still not quite as heavy as he was at the end of August, but no longer as light as he was right after all the recent illnesses. I would love it if we could get a little bit more weight back on him, but honestly just holding steady is a pretty good accomplishment for the winter months. And, to be fair, we are holding steady at something like the 75th percentile for BMI so really not too shabby.

I'm feeling good that January is almost over, so only another couple of months of winter to go. Amazingly, of course, that means the complex coordination of summer plans has already begun, complete with signing up for camp, planning of vacations, etc. Hard to believe that in less than 6 months we will be back on the beach, and Lime will turn 5. Things do seem to move right along!

Week 335: Tenure

As you all know, I do try to keep this blog by and large about the little citrus folks, but every once in a while we larger people can intrude on the narrative. And, I feel like if there were ever a week that such an intrusion would be justified, it would be this week, where I can share the great news that Papa Bear is now officially a tenured professor! He worked incredibly hard for this and it was well-deserved (and a surprise to no one) but nonetheless a tremendous accomplishment and we are all very proud of him.



Of course, on the morning of the tenure announcement, where were Lemon and I? At Children's hospital, of course. Where else would we be, really? We had our annual follow-up with GI. As always, more questions than answers, but here is what we know. Lemon's liver ultrasound has findings that, in an adult, would be consistent with "mild fibrosis." Because the technology is so new, there is no accepted pediatric standard for the measurements. So, no one knows how to interpret it really. But, between that and the bloodwork the doctor believes that everything is normal-ish, for a kid with CF. So, we were told to basically stay the course, continue on our current dose of ursodiol, and repeat the ultrasound this coming summer, along with a repeat of the bloodwork. I am going to take the whole thing as a case of "no news is good news" and move along.

We have been continuing with our daily regimen of manual chest PT in addition to the vest in an effort to get the collapsed area of Lemon's lung to reinflate. I really wish we had some interim way to tell if it was doing anything. Or some way for me to know if I am doing the PT in the best possible spot. But, of course, no and no. So, we are doing our best and we will see where things stand next month. I am trying to line up a second doctor to look at the x-ray and give us an opinion on how to best move forward based on what we see there, so stay tuned on that front.

Other than that, we are just keeping our fingers crossed that we can avoid illnesses for a few weeks at least, so Lemon can get some more weight back on and so forth. Not going to school certainly helps. I feel as though there were just two weeks of vacation, and yet somehow Lemon only has school 3 days this week. I know, I know, I have turned into a curmudgeon. But I came by it honestly.

Week 334: Seen in June

Nothing like a little CF drama to start off a new year. So, as you loyal readers will recall, about a month or so ago Lemon had a chest CT as part of a research study that he is in. And, that, to my disappointment, the CT itself would not be shared with our clinical team, but rather that they would just be notified in the event of "significant findings." Well, guess what, there were significant findings. 

The significant finding is RML atelectasis, or an area of the right middle lobe of Lemon's lung that has collapsed. This is, of course, not great news. The recommended course of action is to do a full month of manual chest PT (focused on the right side) in addition to our regular airway clearance regimen to try to clear the collapsed area and get it to reinflate. We will get a chest X-ray after the month of extra therapy to see if that has happened. If the area does not reinflate, it may be that we will need to have a bronchoscopy to try and reinflate it. 

None of that is ideal, of course. What is far less ideal is that, after receiving the report from the research CT, the doctor who is the head of our CF center went back to the last X-ray that Lemon had done (IN JUNE, MIND YOU) and said that actually, he could see evidence of the area of collapsed lung there, too. This does seem to beg the question of what we are doing the annual X-rays for, if not to catch things like this early, when we have the best chance of intervening before lasting damage is done. As of now, the doctor estimated that we have a 50:50 shot at getting the area to reinflate. He also said something about how good it was that we caught it early. Early? We could have caught it 6 months ago, apparently, and we wouldn't have caught it until 6 months from now at our next scheduled X-ray (if then!) if I hadn't decided to sign Lemon up for that CT. So I hardly view this as an occasion for self-congratulation.

Suffice to say I am very disappointed by how this has all unfolded, and am definitely planning on getting an additional opinion once the next chest x-ray is done. Luckily a new pediatric pulmonologist has joined our CF center in the interim, so I will start there.

Meanwhile, we are following up with the GI doctor on Friday of this week. Now, of course, I am really wondering about the conflicting reports that I got on the results of our last liver ultrasound, which were either "normal" or "mild fibrosis" depending on who you ask. At this point, I am very interested to hear directly from the GI doctor.  

So, not really the start to 2020 that we were hoping for, but at least Lemon is feeling fine and has managed to gain back some of the weight he lost in December, so we are in a better position for whatever lies ahead.

 

Week 333: Decade

We have now entered a different decade than the one the kids were born in. Wild. Of course, in some ways it felt like the past two weeks were about 10 years long, so maybe I shouldn't be surprised.

The past week was sort of a blur of semi-working, semi-juggling the kids, and trying to maintain everyone's sanity for a week without any regularly-scheduled programming. We finished up Cayston after 10 days as hoped, which is great, an I am glad to report that Lemon's symptoms have not returned so I think we kicked this little flare-up. Of course, at a price. Lemon's weight is now down to where it was in August of 2018. Not exactly the kind of throw-back that one wants to see. Hopefully we can catch some kind of a break here the next few weeks so that we can bulk him up a bit again, given that it is only January, meaning February and March still need to be contended with.


After two full weeks with a near-complete absence of routine, we are struggling to get everyone back on track. In some sense, having the rigor of the CF routine always running in the background has been helpful, in at least giving some form to each day. Still, I realized this morning that I had basically forgotten how to pack lunches, and also couldn't recall what time Lemon's school lets out on Mondays, it being early release day. Luckily the babysitter remembered. And I managed to pick Lime at the correct time despite forgetting and then remembering in several consecutive 15-minute intervals. We'll get the hang of 2020 yet.