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!

Week 135: Sprung

Even the longest weeks come to an end.  Fittingly, the hardest part of this week came to an end on the first day of spring.  After six nights in the hospital, we were discharged Sunday afternoon into a world of slightly greener grass, where the bulbs were just starting to push up their first tentative green points.  A paradise on earth where we have access to fresh food that has flavor, hot water that is actually hot, furniture that is coated with breathable fabrics rather than sweaty wipe-down plastics, doors that we can close and know that hordes of strangers won't barge in at all hours of the day and night, rooms whose temperature we can actually control, and so much glorious space for us to roam.  Also, Lime did not quite figure out how to crawl while we were in the hospital.  Phew.




































Last night I managed to successfully run my first home tube feed.  I can't say that I love it, although maybe once we start to see some real weight gain from it I will warm to it more.  At 7pm, I open cans of Pediasure, crush enzyme beads to release the enzymes, mix the two together, let it sit on the kitchen counter til around quarter to 8, pour it into the special tube feeding bag, slip on my hiking headlamp, creep into Lemon's room, hook up an extension to the "button" on his belly, tape it down, hang the bag on an IV pole, run it through the pump, prime the tubing, connect it to the extension on his belly, start it running, and then slip out of the room only to return at 3:30 a.m. to take down the bag and flush his extension with water before returning to bed.  Our eventual goal is to get him up to 3 cans a night, but right now we're starting with 2.  We tried 3 in the hospital and let's just say it was too much, resulting in undesired emissions of various forms.  I think it was just too much, too soon, and if we build up more slowly, we can get there--hopefully in the next couple of months.        


















Today I wasted about 2 hours on the phone with various people, trying to figure out where we were going to get the formula that we're using for the tube feedings and who's going to pay for it.  You'd think that if the insurance company agreed to cover the surgery, the hospitalization, the G-tubes, the feeding bags, and the feeding pump, the formula would be sort of a no-brainer.  That would be in your alternate universe where these things make sense.  Through the persistence of a saintly woman at the home pharmacy company, the insurance company begrudgingly agreed to cover it for a month while they review Lemon's file.  Of course, since it took until today (yes, 27 full hours after Lemon's discharge) for me to get this in place, the formula won't arrive until later this week so we'll have to make do with the lower calorie "over the counter" version of Pediasure until then.

Thanks again to everyone who reached out over the last week.  I know I haven't gotten back to all of you yet, but we heard you loud and clear, and we were so grateful to have you with us during the longest and hardest week our family has weathered so far.

  

Week 134: Under the knife

Today was a huge day. I write that like the day is over, which it's not, since hospital days never end. But here's what's happened so far. We got up at 4:30 this morning so that we would have time to do our morning treatment, since CF never sleeps. Then we packed up and loaded the car with food, medicines, medical equipment, and of course the essential coffee pot, and headed to the hospital.  

We checked in at around 6:15, and were visited by various parties and signed assorted forms. We also received the ultimate assurance that we are doing the right thing, since Lemon's weight today fully clothed was a full pound lighter than he was naked two weeks ago. Since we were the first surgery of the day, they hadn't had time to get behind schedule yet, and I went back to the OR with Lemon right around 7:30.  He's totally used to having a mask over his nose and mouth, so he didn't fight the anesthesiologist at all and was asleep within minutes. Then I went back to the pre-op room to wait it out with Papa Bear and Lime.  

Everything went pretty much exactly according to plan. They placed the PICC first, then did the G tube placement, then the bronchoscopy, for a total of about 3 hours. We got updates about every hour. Finally, when everything was done, I went back to the PACU to wait for Lemon to wake up, and then waited forever and a day for the anesthesiologist to clear us to go up to the inpatient floor. The only minor wrinkle was that Lemon was having a little trouble maintaining good O2 saturation, so they put him on a cannula with a bit of supplemental oxygen. He HATED that. Fortunately, things stabilized after a few hours and they took it off. 

This admission has been complicated from the start, with doctors from multiple departments involved and so forth. There was so much ambiguity about the chain of command that our insurance company didn't receive the pre authorization form until Friday for a surgery we scheduled weeks ago. And they only got it at all because Papa Bear went to the hospital in person several times last week to demand it. Then today when we got to the room they had put up a different antibiotic than what we had been told was planned. And we were thinking it was a 7 day admission for the full course of IVs, but the home pharmacy people came to see us right away to talk about home IVs. And there were two conflicting sets of orders for the tube feeds. And no diet orders at all with room service. In any event I think we managed to get it all straightened out now. But it's exhausting to be the one organizing your child's care on top of everything else, and it's sort of disquieting that it's necessary. Which in this case it absolutely was. 

In any event,  I should try to get the limited rest that an every-six-hours antibiotic schedule interwoven with an infant's sleep cycle allows. Posting from the phone this week so no photos but I'll try to get some up next week. Thanks again to everyone who reached out, we feel your love. 

Week 133: Last week

This is the last week that this will be our version of normal.  A week from today, at some early hour of the morning compounded by springing forward, we will head in to the hospital for surgery to place Lemon's G tube. While he's under anesthesia they'll do a bronchoscopy, to take a look at his lungs and get some samples to culture so that hopefully we can at last learn the true identity of Something T. Vicious.  And, because we're still not over Something T. Vicious in spite of over 3 weeks of levofloxacin, they're going to place another PICC so that we can do another round of IV Zosyn.  Between the adapting to tube feeding and the IV antibiotics, we'll be inpatient for a week or so. 




















On the one hand, I'm dreading the hospitalization, and on the other hand I know that it is the right thing to do for Lemon's health.  Being on isolation in the hospital for a week will be a trial for all of us, but we have to break the pattern that we're currently in.  Hopefully the extra calories from the tube feeds, plus the clear-out provided by the antibiotics, plus the arrival of spring, will put us in a good place for a while.  We could all use a break from the constant, overbearing presence of CF in our lives.  I look forward to the day in the indefinite future when we're used to the tube feeds, when Lemon's lungs have been clear for a while, when can just do our "regular" care routine and lead our "regular" lives again for a few weeks straight, with CF in the background rather than dominating the foreground.














I will keep it brief tonight.  Papa Bear and I are trying to stock up on sanity for the week(s) to come, so we're indulging in a kid-free* hour to take in the finale of Downton Abbey (no spoilers please!) with some hot chocolate.  Living on the edge, I tell you. 

Many of you have asked what you can do for us next week.  Here's what you can do:  Text.  Email.  Call.  Tweet.  Facebook.  Comment.  In what ever way you prefer, use your devices to let us know you're out there thinking of us.  It will be a long, lonely, trying week.  Oh, and throw a few bucks in the direction of our fundraising team for the Cystic Fibrosis Foundation, so that we can find a cure for this disease already! 

*post-script: not exactly as kid-free as originally planned, but who could resist this guy?