Monday, March 23, 2015

Week 83: Six impossible things before breakfast

Thanks to everyone for your concern about our collective health--a week later and I think we are all through the worst of it.  My head has cleared, Papa Bear's pneumonia has resolved, and Lemon is (knock on wood) no longer coughing.  He's still on antibiotics as a precaution but we're hoping the doctor will give the OK to take him off them in a few more days.

This week, we've focused on integrating Pulmozyme into our daily routine.  Pulmozyme is an enzyme (DNase, for those who care) that helps break up the thick mucus that CF patients have in their lungs.  It is given with a nebulizer, which makes the liquid medication into a fine mist that the patient can inhale.  It takes about 7 minutes to administer one dose of Pulmozyme.  So, our first challenge was to identify the 7 minutes in a day when Lemon was least likely to object to sitting very still.  We decided on first thing in the morning, when he's still sort of peaceful and half asleep.  So our new morning routine goes like this:

I wake up at 5:45, stumble into the bathroom and thoroughly wash my hands.  Then I go to the refrigerator and get a dose of Pulmozyme, which comes in single-dose plastic ampules.  Back to the bathroom, where the nebulizer parts are sitting waiting for me inside the steam sterilizer.  Assemble the parts of the nebulizer, and squirt in the medication.  It's now about 6, and I head into Lemon's room.  Without turning on any lights or doing anything that would wake him up further, I get him out of the crib, sit him on my lap, hold the mask of the nebulizer up to his face, and turn on the compressor.  Then we talk about the day ahead, sing songs, etc, until the treatment is done.

At around 6:10, we're heading out of Lemon's room and back to the bathroom, where I take the nebulizer apart and put it to soak in a bowl with hot water and soap.  Then off to the living room for chest PT.  Finally at around 6:35 we head into the kitchen, where I make a shake, get Lemon into his high chair, administer enzymes, two oral medications, two vitamins, and breakfast.  Once Lemon is going strong on breakfast, I head back to the bathroom one last time to rinse the nebulizer parts, toss them into the sterilizer, and get that running so that everything is nice and sterile and waiting for us the next morning.  By then it's almost 7, so I have a generous 12 minutes to eat breakfast, drink my coffee, brush my teeth, get dressed, and be ready to hand Lemon off to the nanny and leave for work at 7:30.  Except for mornings like this morning when I also had to shovel 4" of fresh snow off our driveway, and ended up wondering if there was a way that I could eat my breakfast and brush my teeth at the same time.

Lemon has taken surprisingly well to the whole nebulizer scenario.  He was curious and skeptical the first morning.  The second morning, as soon as I walked into his room, he said "Mask on!  Good boy."  The third morning, he said "Mask on!  Compressor on!  Steam!  No pulling!"  And it's been pretty much smooth sailing since then, with the exception of a minor technical hiccup involving the mask.  Although the mask the clinic gave us is very cute and kid-friendly, and they specifically told me to clean it in the steam sterilizer, the plastic it's made of isn't actually heat stable, so it sort of warped and changed color.  It is also too big for Lemon's little face, so they are sending us a smaller silicone one that should hopefully solve both problems. 

I feel like we're slowly regaining ground in terms of Lemon's weight, and we'll find out more at his next clinic visit a week from tomorrow.  His new favorite dessert certainly helps!

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