Monday, November 30, 2015

Week 119: Salt water

Where are we?  I'd say about 80% of the way there, which is not quite far enough.  We started Lemon back on cefdinir (an antibiotic) a week ago, and it kicked in quickly.  It got his cough back down from many, many times an hour to just a few times a day.  We've done three sessions of the vest every day since last Sunday.  We've added back two doses a day of Zyrtec to try to help dry up his various secretions.  But, we are most definitely not at baseline.  That wet cough is still lurking in the background, just waiting for a session of the vest or a dry bite of food to bring it to out.  Lemon is feeling and acting fine, and yet things are not quite fine, and we are nervous about what will happen after this coming Sunday, when our second two-week cycle of cefdinir ends. 

I do not like the feeling of being a sitting duck, so I called the clinic this morning and we managed to get in for an extra visit today before our extra visit next week.  No surprise, Lemon has not gained any weight since last time, but he hasn't lost any either.  He'd seemed so well in the waiting room that I was starting to question whether it was really worth bringing him in today, but he was eating snack when the nurse practitioner was in the room with us so she heard him cough several times and agreed that we are definitely not at baseline and need to get there whether we do it outpatient or in the hospital.  She outlined three possible scenarios.  One was to admit him today, one was to see if he manages to return to baseline by next Tuesday and if so just go on our merry way, and the third was to admit him from clinic next Tuesday if he isn't at baseline.  We agreed that it seemed premature to admit him today, so our focus turned to how to increase the chances of option B over option C.

The one thing we had left to try was hypertonic saline, an inhaled solution of salt water that acts as an irritant to increase coughing and mucous clearance, and also helps to add moisture to the thick sticky mucous in CF lungs, allowing it to be cleared more easily.  The nurse practitioner and our regular doctor had been hesitant to add it at this visit, because they weren't sure if we would be able to distinguish the increased cough that might result from adding hypertonic saline to our regimen from the increased cough that we're hearing as a result of this illness.  I said I'd rather take that chance and try it than get admitted to the hospital next week knowing that there was one more thing we could have tried at home.  If there's one thing I have expertise in at this point in my career as a CF mama, it is distinguishing between the many different types of coughs that a two year old can produce, so I think we'll be able to tell what's going on a week from now. 

Of course, this decision extended our "brief" sick visit by an hour, since we had to try the first hypertonic saline treatment their in the clinic with the respiratory therapist, to make sure that Lemon didn't have any adverse reactions.  The first step of the treatment is an albuterol inhaler, which relaxes the airways and makes it easier for the treatment to penetrate.  The next step is the hypertonic saline itself, which takes about 20 minutes to nebulize.  Luckily when we're at home we can do this at the same time as the vest, so it won't actually add more time to our treatment routine--just two more medications to manage and two more nebulizer cups per day to clean. 

Lemon tolerated the treatment just fine, and as a reward for being an outstanding patient he received a new green truck from the clinic's prize bag.  Of course, he was so thrilled by the prize that he couldn't eat his dinner, but that's a separate issue. 

We'll begin integrating the new treatment into our routine tomorrow afternoon, once the medications are ready at our pharmacy.  That will give us one chance to run through it with two adults in the house, before Papa Bear leaves for a quick trip to New York on Wednesday to see his side of the family, whom we haven't seen in entirely too long.

What else?  Ah, there is Lime.  Wonderful, chubby, cheerful, patient Lime.  Full of smiles and laughter, figuring out his hands, resistant to sleeping anywhere that Mama is not, resistant to tasting cereal when nursing might be a possibility.  Fascinated by his older brother, by the cats, and by anything with tiny plastic beads inside that make a little rattling noise.  On the one hand I feel like I spend so many of my waking hours (of which there are very many) with him, and on the other hand I feel like I have so little time to just focus on him and drink in the joy of his babyhood with everything else that is going on.  I decided a while ago that I would like him to have his very own episode of the blog, where he gets to take center stage at least for one week.  Unfortunately, it can't be this week, and it probably can't be next week either. I hope for his sake and Lemon's that a quiet week comes quickly and we can all share in the bliss of a communal dose of babyhood, without the shadow of CF being quite as ominous as it is today.


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