Monday, March 28, 2016

Week 136: Atypical

I had imagined that, following our release from the hospital, things would settle into a routine of sorts.  Given how the past year has been, I'm not sure why I thought that, but I did.  Tuesday was pretty much fine, things went more or less according to plan, or at least nothing went horribly wrong. 

Wednesday started off OK, too.  Then came late Wednesday afternoon, when Papa Bear sat down with Lemon to do his afternoon therapy.  He got the vest all set up as usual, and hit start.  Immediately, Lemon began crying in pain.  Papa called me in, and together we took off the vest and lifted Lemon's shirt.  It was immediately obvious that the area around the G tube was very swollen and painful.  We loaded everyone into the car and headed over to the ER. 

The ER was hopping when we got there, but "luckily," since Lemon has CF, we got into a room right away without having to sit in the waiting area.  Instead, we sat in an overheated cubicle as we saw a parade of medical personnel, beginning with ER techs and ending with the chief resident of pediatric surgery.  The ER techs, the nurse, the ER resident, and the ER attending were at least all willing to concede that the G tube site was swollen and a bit red.  The chief resident from surgery, however, walked in, lifted Lemon's shirt, and said "Oh, this looks good!"

At first I thought maybe I'd misunderstood her.  Maybe she meant good as in "Oh, good, the tube is still in place."  Or, "Oh, good, I'm glad they brought him in now before this got worse."  But, no, upon clarification, what she actually meant was "This looks good."  As in, "Nothing looks wrong to me."  As in "Go home, take ibuprofen if you must."  Papa Bear and I explained again that the swelling had appeared suddenly, that Lemon was in a lot of pain, and that he's been through more than his fair share of medical rigamarole and doesn't complain unless something's pretty serious.  No luck.  "Take ibuprofen, continue doing the feeds, and if it's still swollen and painful at your follow-up appointment with surgery NEXT FRIDAY, maybe we'll consider some alternatives."

Reluctantly, we headed home.  Lemon was very uncomfortable all night, in spite of the recommended ibuprofen therapy, which meant no one slept much.  At 8 the next morning, when the clinics opened, I was on the phone to surgery.  The nurse I spoke to asked me to send some photos of Lemon's tube, which by this time was more swollen and more painful, to the point where he was walking (to the extent that he was moving at all) with a sort of hunched posture.  She reviewed the photos, noted that he didn't have a fever, and basically gave me the same line, that it looked normal, but they would see him that day if I insisted.  Which I did.

We went in Thursday afternoon, and met with a nurse practitioner from surgery.  By this time, not only was the entire left side of Lemon's belly swollen, but his belly button (site of one of the incisions) was red, too.  The nurse practitioner examined him, and said that she too thought that this was normal post-op swelling, and that the swelling was causing the tube to be "tight," which was causing pain and irritation--she thought this was more likely than infection, since Lemon didn't have a fever (only a temp of 99.5 on ibuprofen, which is high for him but not their 101.5 cut-off) and it wasn't "that red." 

We pushed back pretty hard at this point, indicating that we didn't have weeks to wait for this to resolve, since we were basically unable to do any airway clearance for Lemon whatsoever as it was too painful.  We also said again that we didn't think that this was just regular post-op swelling, that it had come on very suddenly, that it was spreading rapidly, and that Lemon's belly button was inflamed, too.  We also pointed out that he'd already had a month of levafloxacin and a week of Zosyn in the past 6 weeks, so we weren't overly concerned about one more week of antibiotics here or there.  At first the NP said we should wait 24 hours and see how things went, but eventually she decided it would be ok to send us home with a week's worth of Keflex, just in case.

Well, guess what.  After 24 hours on antibiotics, the swelling was completely gone, as was the pain.  So, definitely an infection--of course it would be the case that the symptoms were a little atypical.  Onward ho.

In other news, we got a swing set and Lime is getting his second tooth.  He hasn't crawled yet, but he is awfully close!

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