Week 123: Love that dirty water

Never a dull moment around here. In the midst of our round of home IV antibiotics, Grandma Carol, Grandpa Dudley and Uncle Jared arrived from New York for Christmas. Grandma Carol and Grandpa Dudley had been planning to come for Christmas for a while, and we'd almost cancelled their visit when we were admitted to the hospital.  After we got discharged from the hospital, though, we figured we should just stick to the original plan.  Uncle Jared had some unused vacation time to burn before the year's end, and apparently felt like a full immersion in our chaotic household was just the thing to soothe his nerves at the end of the year.  All in all it worked out surprisingly well, given that we were running home IV's at the same time as all these people were in and out of our house. I'm especially glad that the grandparents made it out, since it was the first time they met Lime, and they hadn't seen Lemon in quite some time. Grandma Carol got right into the swing of things, watching videos with Lemon while he did his various treatments. 

On Wednesday, we went to the clinic for a follow up visit. Since Lemon seemed to be back at baseline, we crossed our fingers and had the PICC pulled. It was an uncomfortable procedure and Lemon handled it amazingly well. Now we're just keeping up with his normal maintenance routine and waiting to see if the IV antibiotics did the trick. We've also added Flonase to his daily schedule in the hopes that it will help keep his nose from running and break the runny nose - cough - antibiotics cycle that we have been on too many times. On Thursday, we celebrated Christmas a day early, before Grandma and Grandpa went back to New York. So many toys, so little time.

And, that more or less brings us to today, where somewhat against our better judgement but pulled along by the lure of friends we haven't seen in entirely too long, we drove off into the teeth of Winter Storm Goliath to fly back to Boston. The fact that I am posting this from a hotel room in our old neighborhood means that we made it. Don't ask me how. I will say that traveling with the vest was difficult in a way that none of us had anticipated. TSA and the airline didn't make so much as a peep about it.  Leave it to the two year old to find a way to make life more interesting.  The compressor for the vest packs into a rolling case about the same size and design as a regular carry-on, and while we were waiting at the gate before boarding, Lemon decided to stick his head between the two upright parts of the handle on the case and was temporarily stuck, much to his great dismay.  Hopefully the experience was traumatic enough that he won't make the same mistake again!

It is definitely weird to be walking around these old familiar streets after a year's absence. Our hotel is across the parking lot from our old pediatrician's office, where we received Lemon's CF diagnosis. Right after we arrived this afternoon, I ran across the street to CVS to get whole milk and high-calorie snacks, and had a vivid flashback of the hour we spent in the very same store, two and a half years ago, fighting with our insurance company to get Lemon's first prescription for enzymes filled. It's an odd lens through which we CF mamas view the world, that's for sure. Now I'm enjoying a coffee mug of white wine from our old local wine store (keepin' it classy!) and hoping that once the kids adapt to their new surroundings, their behavior will return to normal so that the friends we've traveled so far to visit won't deem us unfit parents. 

I note, without a shred of regret, that this is the last post for 2015.  It's been quite a year, and I won't be sorry to have this one in the rear view.  Let's see what 2016 has to offer--I wish all of you the very best of health and happiness in the year to come.

 

Week 122: PICCing up

It's been a week of a few more surprises, not the least of which is that I'm writing this post from home, at my own computer.

Surprise 1: I thought I knew what tired was.  I was wrong.
Surprise 2: I thought we had a complicated medication schedule before.  I was wrong.
Surprise 3: I thought I knew just how resilient and generally amazing Lemon is.  I was wrong.

On Tuesday of last week, we had a PICC placed.  After the rodeo-type scenario that was the IV placement, we decided to put the PICC in under general anesthesia, rather than just sedation.  Since Lemon was going to be down in interventional radiology anyhow, we took chest and abdominal X-rays, too.  It cracked me up that the radiologist, who was younger than I, referred to it as a "chest film" even though I'm quite sure he's never touched a physical piece of film during his time as a physician.  In any event, the PICC placement went very smoothly and the X-rays looked normal, so that was a win overall.  On Wednesday, the doctors evaluated Lemon and his home team, and decided that we could be discharged to finish up the IV's at home.  Hooray!  We were discharged Thursday afternoon.  By the end of the day Thursday, we'd received a giant bag of supplies from the home health pharmacy, and a visit from a nurse to teach us how to use them.   

Overall I am delighted to be home.  It is vastly better for the kids--they can live their normal lives with a minimum of disruption.  For Papa Bear and me, this existence really stretches the definition of normal, but I'm more than willing to stretch if it keeps my kids feeling like regular kids.  Here's what happens in our house these days (in order to keep this to a manageable length, I'll just focus on what happens between 5:30-6:30 a.m., and you can just use your imagination to fill in the 3 additional meals, 2 additional IV treatments at 8 hour increments, and 2 additional vest/nebulizer treatments that happen at other times of day, plus the usual shenanigans of caring for a 5-month-old infant and keeping a household running).




















5:30. Get up.  Wash hands and put on gloves.  Connect tubing to new syringe of antibiotic, load syringe and tubing into pump.  Prime two saline syringes and one heparin syringe.  Lay out other assorted IV supplies on tray.  Assemble two neb cups and masks.  Load with hypertonic saline and Pulmozyme.

5:45. Go into Lemon's room.  Get therapy cart out of closet, plug in power strip and compressor for vest.  Slip vest onto Lemon by opening one shoulder so as not to interfere with the tubes coming out of his right arm.  Sterilize connector on the PICC with an alcohol prep pad.  Flush line with one of the saline syringes.  Connect tube from antibiotic syringe to the connector.  Connect hoses to vest.  Administer two puffs of albuterol.  Start vest.  Connect neb cup with hypertonic saline to compressor and start compressor.  Check to make sure antibiotic is really running.

6:10.  Switch to Pulmozyme neb cup.  Express enthusiasm for the remarkable rendition of  "Wheels on the Bus" that we are watching on YouTube. 

6:20.  Power down vest and disconnect hoses.  Put on fresh gloves.  Disconnect tubing from the PICC.  Connect saline syringe to the PICC and administer the first flush, disconnect and then connect heparin syringe for the second flush.  Remove vest.  Gather up disposable debris and put in trash.  Remove gloves.  Take off vest.  Stow cart and various supplies in places where a two year old will not destroy them.

6:30.  Breakfast.  Prepare Scandishake.  Mix applesauce, probiotics, and enzymes.  Convince Lemon to ingest the aforementioned.  Load syringes with ranitidine and Zyrtec.  Convince Lemon to ingest the aforementioned.  Locate multivitamin and vitamin D solutions.  Convince Lemon to ingest the aforementioned.  Locate coffee cup.  Discover that coffee is cold.  Put in microwave for 33 seconds.  Ahhh.  Ready for the day to begin.

The good news is that Lemon does seem to be more or less back to baseline.  We have a follow-up appointment at the clinic on Wednesday, and my guess is that they will take the PICC out.  Then, we'll watch and wait.  Hopefully all this has been worth it, and whatever has been causing all Lemon's troubles will be gone, and we can return to our version of normal.  Although I wouldn't recommend this lifestyle as an overall fitness plan, it has had one noticeable side effect--two kids later, I could fit into my wedding dress today (if I still owned it, that is).  

Week 121: In

For a brief moment last week it looked like we might have kicked this bug. After adding hypertonic saline to our daily routine, Lemon was able to get back to his baseline. Unfortunately, once the oral antibiotic ended, the runny nose returned with the cough hard on its heels. I knew pretty much as soon as his nose started to run that we were going to end up being admitted, but we managed to hang on in a state of semi-denial until Sunday morning.  Then, knowing that an admission was inevitable, we decided to just head in rather than waiting at home for Lemon's symptoms to get any worse. I think that was the right call, especially since Sunday afternoon is a pretty quiet time at the hospital and we were able to get ourselves and all our stuff situated without too much trouble.  

It required the combined effort of 6 adults to get Lemon's IV placed, but after that trauma it hasn't seemed to bother him much. He is receiving Zosyn, a broad-spectrum antibiotic, which hopefully should kill whatever is causing his troubles. We're also doing 4 vest treatments per day in an effort to shake out whatever we can and help the antibiotics work. 

There are a lot of things that are unsurprising about this hospitalization so far: terrible food, constant interruptions by various staff members, blood sugar monitoring at 2am, etc. 

Some things have surprised me, though. One is the amount of attention it requires to keep a two-year-old from pulling out his IV by accident. Lemon has been amazingly good about not messing with it on purpose, but he moves around a lot and those little tubes seem to want to get twisted and snagged on every possible point of entanglement. And then there's the pole and the wire that plugs it in and the furniture and the toys and the other people in the room. Another thing that surprised me is that we're essentially using all our own gear and medicine here at the hospital. We brought our own vest and compressor, and all our own medicines and vitamins. Good thing, too, especially for the enzymes, otherwise we'd be asking Lemon to wait 45 min before each meal or snack while an individual enzyme capsule was carried in by passenger pigeon from Nebraska. 

Some other minor surprises include the fact that this room in a children's hospital doesn't have a changing table, which makes two kids in two different size diapers a real challenge, never mind the fact that they want us to save Lemon's diapers so they can measure his output.  Also, room service will not deliver coffee, and you can't even call until 6:30 for your non coffee to be delivered, which doesn't help much if the kids are up at 5:15.  Rest assured my little coffee pot from home is now installed in a spot befitting its importance in terms of my survival. 

None of this would be as big a deal as it is were it not for the fact that we're not allowed to leave the room, lest we spread whatever Lemon has. I'm told there's a nice kitchenette on the floor with a refrigerator and hot water and whatnot, but it's of no more use to me than my kitchen at home. There's also a nice activity room and family lounge that we saw on our way in and won't see again until we leave. 

So, that's our story. Lemon, Lime, and I in a hospital room together for the next 10-14 days, with our key support people and the ever changing roster of staff drifting in and out. We live so close to the hospital that I can see the foot of our street from our 5th floor window, and yet home sure seems pretty far away right now. 

* written on my phone, so no photos this week--hopefully next week I'll figure out a way to get the pictures up. 

Week 120: Compressed

As I mentioned last week, we introduced nebulized hypertonic saline to Lemon's treatment regimen, in the hopes that it will help him kick whatever it is that we've been treating with antibiotics for the last month.  When we got our training last week, the respiratory therapist said that each treatment should take about 20 minutes.  Well, we ran it at home and it took over 30 minutes.  We've had this issue before, with our nebulized treatments taking much longer than they should.  In fact, over the summer I was convinced that there was something wrong with the compressor that drives the nebulizer, and I exchanged our unit for a new one under warranty.  That didn't make much difference, and we just sort of came to accept that the treatment we were doing took longer than it was supposed to. 

That was all well and good when it was just one small (2.5mL) treatment, once a day.  But, adding two additional treatments at 4mL each and we could see that all this nebulizing was going to dramatically increase our daily treatment time.  And we don't have more time in the day, as previously discussed.  I sent a message to our clinic explaining that our treatments were still taking too long, and asking for their suggestions.  The message I got back said that the respiratory therapist forgot that we were doing our treatments at home (where did she imagine we were doing them, I wonder?), and had quoted us the time it would take with the equipment that they have at the hospital.  Their proposed solution was to just run the nebulizer for 20 minutes each time, knowing that the full treatment wouldn't be delivered.  But, they reasoned, Lemon is small and probably 2/3 of the dose would be enough.

I didn't find this answer very satisfying.  First of all, Lemon won't always be small, and he will be doing nebulized treatments for the rest of his life.  So we need a solution that will work both now and when he's bigger.  Second, why not give him the full dose of each medication?  If we're going to go to all the trouble of doing the treatments, I feel like we should do them right.  Finally, the number of nebulized treatments that he has to do will only go up, so we need to solve this problem now, not later.  It seemed like our clinic didn't have the answer I was looking for, so I took to the internet, and consulted some sources of unknown veracity, like, you know, blogs.  And, I discovered that there is a whole category of compressors out there that for some reason our clinic never told us about, ones that can generate similar amounts of pressure to what they showed us at the hospital.  Yes, they may not be covered by insurance.  But we found one for $270 and thought it was worth a try, so we ordered it.  Happy Hannukah, Lemon!



Here's a demonstration of the difference between the compressor the clinic gave us and the one we bought.  In the video, the nebulizer connected to the new compressor (Mobileaire) is on the left, and the old (Innospire) on the right.  My assistant's arm can be seen in the lower right.  Look at the difference in output (mist) coming out of each one.  Night and day, right?  Now, we can get all our treatments done in about half the time as with the old compressor. 

While I'm so glad that we were able to track down this solution, and are fortunate enough to have the resources to just buy it out of pocket, it's raised some questions for me.  Why is it that our clinic never even mentioned this category of compressor to us as a possibility?  Why did I have to use a combination of Google and looking at some of my favorite CF blogs to track this down?  Why will insurance companies cover a nebulized medication that costs $1000+ per month, but balk at $270 for the machine that will allow you to actually deliver the treatment in a time short enough that it's compatible with the patient living a vaguely normal life?

Anyhow, enough on compressed air.  Lemon came off antibiotics yesterday, so we're just keeping our fingers crossed that he stays healthy for the next few days/weeks and that we can avoid a hospitalization.  Not that there's ever a good time for a hospitalization, but with Grandpa Dudley and Grandma Carol coming to visit for Christmas, and our much anticipated trip back to the east coast the following week, this would be a particularly bad time.  Of course, we were not so foolish as to purchase any non-refunable tickets or hotels, but here's hoping that just for once we'll be able to execute a trip as planned!