Monday, December 28, 2015

Week 123: Love that dirty water

Never a dull moment around here. In the midst of our round of home IV antibiotics, Grandma Carol, Grandpa Dudley and Uncle Jared arrived from New York for Christmas. Grandma Carol and Grandpa Dudley had been planning to come for Christmas for a while, and we'd almost cancelled their visit when we were admitted to the hospital.  After we got discharged from the hospital, though, we figured we should just stick to the original plan.  Uncle Jared had some unused vacation time to burn before the year's end, and apparently felt like a full immersion in our chaotic household was just the thing to soothe his nerves at the end of the year.  All in all it worked out surprisingly well, given that we were running home IV's at the same time as all these people were in and out of our house. I'm especially glad that the grandparents made it out, since it was the first time they met Lime, and they hadn't seen Lemon in quite some time. Grandma Carol got right into the swing of things, watching videos with Lemon while he did his various treatments. 






On Wednesday, we went to the clinic for a follow up visit. Since Lemon seemed to be back at baseline, we crossed our fingers and had the PICC pulled. It was an uncomfortable procedure and Lemon handled it amazingly well. Now we're just keeping up with his normal maintenance routine and waiting to see if the IV antibiotics did the trick. We've also added Flonase to his daily schedule in the hopes that it will help keep his nose from running and break the runny nose - cough - antibiotics cycle that we have been on too many times. On Thursday, we celebrated Christmas a day early, before Grandma and Grandpa went back to New York. So many toys, so little time.




And, that more or less brings us to today, where somewhat against our better judgement but pulled along by the lure of friends we haven't seen in entirely too long, we drove off into the teeth of Winter Storm Goliath to fly back to Boston. The fact that I am posting this from a hotel room in our old neighborhood means that we made it. Don't ask me how. I will say that traveling with the vest was difficult in a way that none of us had anticipated. TSA and the airline didn't make so much as a peep about it.  Leave it to the two year old to find a way to make life more interesting.  The compressor for the vest packs into a rolling case about the same size and design as a regular carry-on, and while we were waiting at the gate before boarding, Lemon decided to stick his head between the two upright parts of the handle on the case and was temporarily stuck, much to his great dismay.  Hopefully the experience was traumatic enough that he won't make the same mistake again!


It is definitely weird to be walking around these old familiar streets after a year's absence. Our hotel is across the parking lot from our old pediatrician's office, where we received Lemon's CF diagnosis. Right after we arrived this afternoon, I ran across the street to CVS to get whole milk and high-calorie snacks, and had a vivid flashback of the hour we spent in the very same store, two and a half years ago, fighting with our insurance company to get Lemon's first prescription for enzymes filled. It's an odd lens through which we CF mamas view the world, that's for sure. Now I'm enjoying a coffee mug of white wine from our old local wine store (keepin' it classy!) and hoping that once the kids adapt to their new surroundings, their behavior will return to normal so that the friends we've traveled so far to visit won't deem us unfit parents. 

I note, without a shred of regret, that this is the last post for 2015.  It's been quite a year, and I won't be sorry to have this one in the rear view.  Let's see what 2016 has to offer--I wish all of you the very best of health and happiness in the year to come.
 

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