Week 137: Love/hate

I think it's fair to say that so far I have a love/hate relationship with the G tube.  On the one hand, I love what it's done for Lemon's health.  At our surgery follow-up on Friday we learned that he has gained 4lb since it was placed--that's a half-pound a week, putting him at the 50th percentile for body weight for his age.  By far the highest percentile he's ever achieved, and we haven't even reached our goal of delivering 3 cans of Pediasure 1.5/night (we're close, though, at 2.5). I love how much energy he has now, even when he puts some of that energy towards a category of behaviors that I will refer to as "being 2." I also love that we can give Lemon his liquid medications through the tube.  It's not often as a CF parent that you can take something _off_ the list of medical things your child has to do every day, and thanks to the tube we can tell Lemon that he doesn't have to take the medicines he doesn't like by mouth anymore.   

On the other hand, I hate just about everything else about the G tube.  I hate having one more thing to worry about.  We stopped antibiotics on Thursday, and so far so good, but of course I'm watching like a hawk to see if the infection comes back.  The nurse at our follow-up thought the skin around the tube didn't look totally healed yet, so I'm spending more of my day than I would like cutting little custom dressings to go around the tube, taping them together, and checking to see if they've fallen off yet thanks to Lemon's active lifestyle.  We're always worried about the button snagging on something.  I'm always keeping an eye on the clock during dinner to see if it's time to start pre-digesting the Pediasure yet.  When Lime wakes me up during the night, I'm always checking the clock to see about how long it is until Lemon's feed will be done and I have to get up in the dark to stop the pump and flush the tube.  I know it's a little thing, but I hate how it looks.  I hate how there's a weird plastic device popping out of my otherwise perfect-looking little boy.  I also hate how his skin, like mine, is sensitive to every medical adhesive ever invented and so his stomach is covered in the red marks of adhesives past.   I also hate having an IV pole in his bedroom.  You'd think I'd be used to medical equipment in his room, since there's a lot of it and it's been there a long time, but there's something about the IV pole next to the bed that really gets me.  I'm sure we'll all get used to these things with time, since it's only been two weeks, but I feel like it's occupying a lot of our thoughts right now.

In other news, Lime got his second tooth and is working really hard on a third.

I took Lemon to his first-ever birthday party of a friend from school.  He had a great time.  You will be surprised to learn, based on these photographs, that there were about a dozen other children present at this party.  None of them shared Lemon's intense fascination with the toy space shuttle, however.

With all the weight he's been gaining, Lemon started to outgrow his old clothes, so I went on a little shopping trip for him and came home with his first-ever pair of jeans.  I cannot begin to tell you how excited he is to have jeans "just like Daddy."  I fear that there may be a situation tomorrow morning when he discovers that they are in the laundry basket and not in his drawer...

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?

Week 132: Leap

I made a minor error in my posts from Weeks 130 and 131, which I would like to take this opportunity to correct.  I mistakenly referred to Lemon's latest malady as "Something Vicious," omitting its middle initial, T, as in "Truly."  We finished up our 12-day course of levofloxacin on Thursday, and Lemon was pretty much back at baseline, no cough or runny nose.  We were (extremely) cautiously optimistic.  We caught our breath on Friday, and good thing, because by Saturday it was clear that Something T. Vicious was still with us. 







I ended up calling for more levofloxacin on Sunday.  I had thought about waiting one more day, but two things swayed me.  First, Lemon seemed to be getting distinctly worse as the day wore on, and second, because if you call the clinic after hours or on weekends, you get to speak directly to a doctor within 10 minutes.  Compare that to the quality weekday experience, where you speak to a receptionist, then a nurse calls you back, invariably at an inconvenient time, then you tell the nurse what's up.  Then the nurse goes off and talks to a doctor, and then calls you back, inevitably at another inconvenient time, and reports to you what the doctor said.  I'll take option A, thanks.  In any case, in addition to being a better patient experience, calling on Sunday was definitely the right decision medically.  Lemon really needed those antibiotics, and even in spite of them he coughed all night last night.  His spirits seem bright enough today, though, and although his appetite has been basically nil, everything that we've put in has stayed in--far more than we can say for our first encounter with Something T. Vicious.

This latest illness has made the issue of the G tube much more pressing.  We continue to be locked into this vicious cycle of no weight gain/respiratory infection/no weight gain, and we need something to break the cycle.  After talking to several different members of Lemon's care team, it's clear that everyone is on the same page--we've got to get that tube in ASAP, and try to get some calories into Lemon so he has something to use to fight off infection.  Of course, it's a bit of a Catch 22, because he needs to be cleared of this infection, or at least at his respiratory baseline, in order to undergo the surgery.  We've decided that we need to take advantage of whatever window this round of levofloxacin gives us, and schedule the surgery either for just before the course ends, or failing that, right after it does end, which means sometime in the next week or two.  I'm hoping we'll get a date fixed in the next day or so, but this one "minor" procedure on one little patient takes coordination of about a dozen medical professionals.  Meanwhile, we'll do an experiment to find out how long one can sustain oneself on nothing but Ensure Clear and strawberries...

One incredibly powerful thing that I did this week was to have coffee with another CF mom from our community who has 3 year old fraternal twins, both with CF (talk about perspective!).  One of her twins sounds so much like Lemon, at least in terms of relationship with food.  That little girl got a G tube about 2 years ago, and although the adjustment to the tube feeds was a big challenge, they've seen a great payoff both in terms of weight gain and lung health.  So I felt very encouraged, to know that there is hope and it is possible to break out of the loop that we're in, and that the tube may get us there.  It's also amazing that this CF mom is a woman that I've met in person only twice before, and briefly at that. Yet, as soon as we sat down at our little table in Starbucks the connection was deep and immediate.  We're living versions of the same life, on opposite sides of the isthmus that divides Madison into East and West.  So, at our third meeting, it felt like we'd known each other forever--we laughed, we cried, we enjoyed Lime's sunny little smiles, and we shared our hope for a better future for our kids and for everyone who wakes up to face CF every day.  

Week 131: Not enough

I'm happy to report that the combination of lots of time in the vest plus oral antibiotics seem to be winning the battle with Something Vicious.  We'll find out about the war once we go off antibiotics at the end of this week.  Unfortunately, thanks in part to Something Vicious, Lemon has still not really gained any weight.  Since September.  The volume of the alarms that go off at each visit has been getting louder and louder, and reached a fever pitch this past Wednesday.  Here's where we are:

Our electronic medical records may be fancy, but they don't yet let you manually scale the axes to something useful.  Nonetheless, I think you can see the point.  The goal for all CF kids is to hit the 50th percentile for weight-for-length (the yellow line).  We've never done it, and at the moment we've slipped below the green 10th percentile line.  More troubling is that Lemon's height velocity may be slipping (data not shown), which would mean that he isn't taking in enough calories to keep up with the growing that he's supposed to be doing.  For the first time, our after-visit summary said, "Please consider G tube placement."

So that's what we're doing.  Considering it.  Considering it seriously enough that I took Lemon in on Friday for a consult with pediatric surgery.  The operation itself doesn't sound too bad, other than being an operation and involving general anesthesia and whatnot.  I'm much more concerned about all the things that follow--more equipment, more tubes, weird formula, unknown impacts on our already ridiculous schedule, even more complexities with living and traveling, a semi-permanent hole in my kid that is not suppose to be there, etc.  Of course, I have to weigh those concerns against the concern of continuing to be this skinny--too skinny to grow, to skinny to fight off the inevitable infections, too skinny to wear the pants portion of the pj's that he got for Christmas and loves.

But enough of that.  We will continue to consider until the middle of next month, when we have our follow-up at the clinic.  I'm fairly sure we'll end up scheduling the surgery for sometime in April, but we'll hold off on making a final decision while we do a little more homework.

In the mean time, Lime (who has also been fighting off a touch of Something Vicious these last few days) finally managed to cut his first tooth.  Of course I'm thrilled for him, but I'm also slightly heartbroken that this toothless grin that I could stare at all day will soon have teeth in it.  I recognize the cuteness of the two-toothed stage, of course, but the toothless stage is what really tugs at my heart strings.  And it's gone forever.  Sigh.  If its disappearance is accompanied by the arrival of sleeping for more than 2 hours at a time, I would accept that as consolation.

We also had a wonderful visit with Uncle Jared this week.  He got in lots of quality time with the nephews.

 And paid the consequences--following Opa's lead, he took advantage of a brief recuperation window.

He headed back home to New York on Saturday, much to Lemon's chagrin.

And so it goes--another fast week in our little lives.  We've had some mild weather the last few days that melted a bunch of the snow, revealing the barren wasteland that is our yard, which of course has me thinking about garden projects for the spring.  Topping the list are a swing set, a sour cherry tree, and a pineapple quince tree.  That and finding a way to keep the rabbits from eating my chili plants as soon as I put them in the ground...