Adding stamps to our frequent flyer card

Cheeky has had a bit of a week.  Tuesday night he started with fever, vomit, and diarrhea, and although it’s evolved some, he is still showing those unpleasant symptoms.  The bright spot is that his counts are good enough that he is able to weather the storm at home.  There’s been a few ER trips and unfortunately an unplanned clinic visit on poor Deanie’s birthday.  Nonetheless, we are grateful to be home.

Nadine was a champ about clinic on her birthday. She shared her birthday presents with him and didn’t complain.  Best buddies.

All this being said. it’s been a challenging, emotionally-taxing week.  Numerous Smilow visits, tons of vomit clean up, newborn-style diaper changes (i.e. nine or 10 per day minimum), newborn sleep schedule (we don’t sleep at night; we take naps), a sad Naaman, and lots of unpredictability.  Thursday, his NG tube dressing fell off and therefore his tube fell out.  When he has a new one placed, it never works on the first try, and he is gagging and crying and it’s awful for him. This new NG is shorter than we are used to, and it has caused some problems trying to administer meds (he fights because he sees a syringe in his face instead of behind him) and trying to administer tube feedings while he sleeps (not enough length on the tube so it pulls off the pump as soon as he tries to roll over). Our Smilow team took great care of us, however, and we have somewhat worked out the kinks with the new NG tube. We have an extension tube that we can attach for feeds and take off for the rest of the day.  (You can see just how short the NG tube is in the photo below.)  We still never know what to do at his tube feeding times as far as what to feed him and how much, and just play it by ear whether we will try to give him his formula or give him Pedialyte because his stomach can’t handle anything else.  Naaman goes back to clinic Monday for counts check and is scheduled for chemo on Thursday if he is well enough. We aren’t even thinking about that at this moment, since starting chemo means he goes back on the clinical trial drug that rocks his liver and can clog his tube. Keep praying, Team Naaman!