Monday, May 30, 2016

Week 145: Remember

Somehow we all made it through this past week's gastric emptying study intact.  I guess in one way it's fortunate that Lemon doesn't like to eat, since he really didn't care at all about not being offered any food on Tuesday morning.  He was a little sad about no water, but all in all he wasn't that perturbed.  Our main concern was that he actually eat something for the study, and luckily he gulped down 3 ounces of applesauce with a little bit of radioactivity mixed in with a minimum of protest. 

The imaging portion of the test was actually much harder than I had expected.  The test was done at the main (ie adult) hospital, so the sensor is set up such that if an average-height adult human stood in front of it, the sensor would be level with her abdomen.  In order to get Lemon positioned at the right height, they dragged in a really wobbly wheeled office chair set to maximum height (for those of you who have ever done bench science, think about the worst, wobbliest bench chair that you had as a rotation student because no one else would use it--the one where you had to sort of sneak up on it and lower yourself down very gently so that it didn't shoot out from behind you or have the back fall off--that was this chair).  For each image, I had to sit on this chair with Lemon on my lap, propped up on two slippery hospital pillows so that he'd be in the right position, and have him hold absolutely still for 60 seconds facing the sensor, and then turn around to face me and hold absolutely still for 60 seconds more. 

Those of you who have any significant life experience with boys in the 2-3 age bracket will know that sitting still is not really part of the program.  Especially not for 120 consecutive seconds, every 5 minutes for a half hour, and then every 15 minutes for another 2.5 hours.  It was definitely a trial for all involved, but we made it through somehow.  We'd brought out a new toy and some new books from our stash of Christmas presents in the basement, carefully stored away for occasions like these, and that actually held Lemon's attention for most of the time we were there.  We still don't have the results of the test yet, because the images have to be interpreted by his GI doc.  And, I think the doc is holding of because, joy of joys, we have another imaging test this week--this time an upper GI series coming up on Wednesday afternoon (now accepting bets on whether or not I convince Lemon to drink the barium or whether we have to go in through the tube).  So, I'm guessing he wants the full picture, so to speak, before giving us an interpretation.

Other than our adventures in imaging, it was a pretty peaceful week around here.  We've enjoyed a relaxing long weekend, with a few outings for ice cream, some home improvement projects, and some visiting with friends.  Just to keep things interesting, Lemon decided to disconnect his tube feed by himself this evening, resulting in formula everywhere.  But, he did seem fairly contrite so hopefully he won't take it upon himself to try this particular stunt again!

 Meanwhile, Lime keeps reminding me that he is getting very, very close to the end of "the baby year."  He is pulling up and standing all the time, and is starting to cruise and take some steps while pushing something in front of him.  He's also decided that baby food is for, well, babies, and if any table food is around he will flat out refuse the baby stuff.  And he finally figured out a sippy cup.  Of course I'm excited that he's doing all these new things, but I'd be OK with him staying a baby for just a few more weeks.  With the year we've had, I feel like I've earned a few extra weeks to savor the innocence and chub, to make up for the time that we lost over the winter.  For better or worse, though, time seems to be marching along at its usual breakneck speed, and the year of 0 and 2 is almost at an end!

Monday, May 23, 2016

Week 144: NPO

Monday through Wednesday of this past week, we split our little family in half so that I could attend a work meeting in Nashville, TN.  Lime and I headed south, while Papa Bear and Lemon stayed in Madison.  The whole thing worked out surprisingly well.  The travel to and from Nashville went very smoothly (aside from the baggage handlers breaking the mechanism that allows the car seat to attach to the stroller).  I'd hired a babysitter to watch Lime during my meetings, and she was really fantastic, keeping Lime in good spirits through a pretty long day.  Luckily the hotel was right next to a live railroad line with lots of freight trains, so that provided a reliable source of entertainment. 

My coworkers kept commenting on how amazed they were that I'd traveled by myself with a baby, and how hard that must have been.  I told them in all seriousness that this was the easiest 3 days I've had in the last 18 months--only one kid (the one with no health issues), no cooking, no laundry, no doctor's appointments, no shutting off the feeding pump at 3:30 was awesome.  Plus, I got to meet all my coworkers in person for the first time, which was a lot of fun.  I felt slightly bad when I came home to find Papa Bear lying prostrate on the floor of our sun porch waiting for sustenance to arrive, but only slightly, as he's abandoning me with both kids multiple times over the next few months.

We have a big day tomorrow, with Lemon's gastric emptying study.  After the tube feed ends tonight, he's NPO (nil per os, or nothing by mouth) until the start of the test, which should make for an interesting morning.  I'm hopeful that he'll actually be hungry (or more likely thirsty) before the test, and that perhaps he'll actually eat or drink something by mouth.  Otherwise, I've been instructed to bring his feeding tube and some formula so I can do a bolus feed if necessary.  I'm hoping it doesn't come to that, since we've never done one before and I'm not sure how he'll react.  We'll probably be in the hospital about 4 or 5 hours, and because of the concerns with infection risk, we'll be stuck in the imaging room the whole time.  Good thing I have a lot of experience with being stuck in a hospital room with a 2 year old at this point.  It's in the adult part of the hospital, though, so they may be surprised when they see the amount of supplies that it takes to survive being cooped up for 5 hours with a very active toddler!

Other than the travel and the usual medical goings on, we've been soaking up the nice warm weather that's finally come to Madison.  Lime went for his first excursion in the jogging stroller this season, which I think he enjoyed.  

Lemon and I have been hard at work in our garden, planting various fruits and vegetables.  

 And of course, family ice cream outings, which are Papa Bear's favorite part of any summertime activity!

Monday, May 16, 2016

Week 143: Music City

I would like to start this post with a heartfelt thank you to everyone who contributed to our last-minute Great Strides campaign. We are so touched by how many of you donated, and how generous your donations were. We raised just under $6000 for life-saving research. Knowing that we have all of you behind us makes us even more optimistic that we will find therapies to treat the root cause of CF for Lemon and everyone else who is still waiting. 

This year's walk took place on a surprisingly chilly Sunday morning. As was the case last year, the walk began and ended at the Madison Mallards baseball stadium. We've been part of the Madison CF community for long enough now that I actually feel like I know a lot of the people at the walk, and it's a great opportunity to connect with some of the other CF moms and dads that I otherwise almost never get a chance to see. Since our kids can't be in the same room, it's very hard for us as parents to find time to get together!

In other news, for once the children's hospital managed to make something more convenient rather than less. On Wednesday they managed to consolidate our appointments with surgery and orthopedics into one back-to-back session. We did surgery first, and Lemon was completely unfazed by the g-tube change procedure. I actually did it myself, with the nurse watching. It wasn't difficult, but it was really weird to see the actual hole in his stomach. The nurse thought the site looked great, and we are officially discharged from surgery. I'll be changing out the tube myself every 3 months or so going forward, until that unspecified day in the future when Lemon decides to eat enough food to sustain himself. 

Orthopedics also went well. They took off the cast and took some more x rays. The break in the humerus is healing well. On this set of images they discovered that, hey, guess what, the ulna was fractured, too. But, that's also healing well. The ortho tech made half of Lemon's old cast into a splint that we can take off when he's bathing or sleeping, which is way easier than the cast. We go back one more time in a month and assuming everything's healed by then, we'll be discharged from ortho, too. Then we can go back to our regularly scheduled program of just focusing on pulmonary and GI!

I apologize for the lack of pictures this week, but I am once again blogging from my phone as I am actually in Nashville, TN at the moment on a business trip. Lime is here with me, and Lemon is home with Papa Bear, who is doing his first stint of solo parenting since about 18 months ago.  I'm sure it will be quite the adventure for all involved.  More on that, plus a double dose of photos, next week!

Monday, May 9, 2016

Week 142: Step up

Thank you so much to everyone who has already donated to our Great Strides team.  The walk is this coming Sunday, so you still have one more week to donate and help us to reach our team goal by clicking here!  Your donation will help to support the outstanding research that is will find therapies for Lemon and all his fellow travelers with CF, to help them lead long and healthy lives.  So much progress has been made over the last few years, and it's really important to keep up the momentum for a few years more in order to push some of these promising candidate drugs from the laboratory out into clinical trials.  My hope as always been that there will be a medication that treats the root cause of CF for Lemon to start taking before he's 10 years old.  He's almost 3 now, so the clock is ticking! 

This week marks the first week in I don't even know how long that I did not set foot in Children's hospital.  With Lemon having so many body parts under clinical supervision at once, we seem to be there once a week if not more.  I guess I should feel lucky to have even had a week off, since this coming week I have a maximally inconvenient day on Wednesday, with an appointment at 9:30 a.m. to have his first ever G-tube change (how has it been 2 months since his surgery already?!?), and then at 12:50 a second appointment to take off his cast and do more x-rays.  I'm hoping to sneak in a weight check while the cast is off, so that we can get an accurate sense of where we are. 

Lemon's eating has been really hot-and-cold the last few weeks.  Some days he eats quite a bit (by his standards) and some days almost nothing at all.  I do find it reassuring that we have the tube feed to back us up at night, so I know he's not losing ground, but I still wish he would eat more.  I know he'll have a feeding tube for a long time, but I still wish I could at least envision a way that we could get by without it someday.  Right now, given how little he takes in orally, it's completely impossible to imagine.  It was recommended to us that he do some occupational therapy to try and help him overcome his issues with actually putting food in his mouth.  I definitely want to give it a try, but I decided for sake of my sanity and continued employment that we put it off until the great episode of the arm is behind us.  For one thing, it would be great if he had use of his dominant hand while working on his eating, and for another I simply cannot do medical appointments with any greater frequency than I am now. 

Lime has been really working on his crawling, and he can now travel 10 yards or so at a pretty good clip.  He is definitely getting ready to leave babyhood behind, which is both happy and sad.  I am ready for him to be a little less dependent on me, and yet he is at such a sweet age right now that I want him to linger for just a little while.  He has his first word (Mama!), which he deploys frequently and to great effect.  After a somewhat slow start, he's really taken to solid food and will try just about anything you put in front of him, and will shovel in his favorite foods with great enthusiasm.  I am hoping this portends the advent of sleeping through the night. He is also finally big enough that I have been able to realize my long-time goal of having both kids sit in the seats of one of the big shopping carts at Costco. 

Next week, Lime and I will go on a great adventure together--I have a work trip to Nashville, and due to the aforementioned dependency, Lime is coming with me.  Papa Bear and Lemon will have some father son bonding time back at home in Madison.  Hopefully not too much of that time will be at 4 a.m.!

Monday, May 2, 2016

Week 141: Awareness

Only two visits to Children's Hospital last week, and both of them planned, so we will count that as a success.  The first was a previously scheduled follow-up with a GI specialist to talk about Lemon's gastric emptying rate.  Honestly it was a pretty boring appointment, since there's not that much you can tell about gastric emptying from looking at someone sitting on a table in front of you.  So, most of the appointment was us sitting in the room while the doctor sat at the computer and ordered some tests.  It didn't seem like we really needed to be there at all--the whole thing could have been done over the phone, including discussion of the details of the imaging tests.  As you might imagine, tests that look at the stomach emptying require that you put something in the stomach first.  So, the doctor asked us if Lemon would eat two scrambled eggs or two slices of bread.  I said it depended on the time-frame.  If he meant "before Lemon starts first grade," then I could feel fairly confident about the bread, but the eggs seem unlikely.  Since what he was actually talking about was 10 minutes (!), we are looking into options that can be put in through the G-tube.  They really want solids, and want to be able to image it going down the esophagus, too, but you've got to take what you can get, and I know we aren't getting two scrambled eggs.

The other appointment was for Lemon's broken elbow.  The old cast finally came off, and they took some more x-rays without the cast which show that the bone is still broken but not displaced.  So they put on a new cast and will take that off and take more x-rays next week.  We're definitely hoping to avoid surgery to put in pins, but time will tell.  Coincidentally, it was super hero day at the hospital.  Although Lemon was not at all interested in interacting with the adults in poorly-fitting superhero costumes, he was very excited to receive his own cape, mask (which he refers to as "glasses"), and hat. 

Lime has really gotten the knack of crawling, and perhaps more importantly, he has figured out how to get from lying on his stomach back up to sitting.  This has made him a fundamentally happier human being.  It's hard to believe that in just another few months, he'll be walking!  His relationship with Lemon is continuing to grow.  The two of them crack each other up all day long.  Since Papa Bear is away for a few days, I've also (by necessity) lived out my dream of bathing them together, which is sort of cuteness overload.  Unfortunately it requires all 3 of my hands to keep them both upright in the tub, so I don't have any pictures yet, but I will try to find a way.

As some of you already know, May is cystic fibrosis awareness month.  Of course, in our house, every month is cystic fibrosis awareness month, but May is the month that we as a community raise awareness of the disease and our fight for a cure.  It is also Great Strides month, when we as a community raise money to support the life-saving research that is being spearheaded by the Cystic Fibrosis Foundation.  The work that the foundation is doing represents Lemon's best chance for a long, healthy life. 

After the year that we've had, I can say two things.  The first is that we owe everything that we have to the people in the CF community who raised money and did research before Lemon was born.  Without the therapies that were discovered through that work, Lemon would not be where he is today.  The second is that we need a cure.  The therapies that we have now are vastly better than nothing, but they are do not treat the root cause of the disease, and that is what we need. 

So, if you've enjoyed following along with us for the past year, please consider donating a few bucks to our Great Strides team.  I know there are about 150 of you who read this blog every week, and another 100 or so who read from time to time.  If each of you put in just $50, we'd raise over $10,000 for the research that will save Lemon's life.  Click here to go to our team's fundraising page.  Give whatever you can.  Thank you!