Monthly Archives: December 2016

Line free is the way to be….I think….probably….Yes, okay, we’re definitely maybe ready for this. I think.

Posted on by
5

This morning we got a belated Christmas gift:

img_6021

I hadn’t wanted to say too much until it was actually done, because we have already delayed the line removal procedure once due to a cold – and we have been close enough to this enough times to know that even when things seem to be going stupendously, that can disappear in the blink of an eye (remember what happens when we get cocky enough to look progress directly in the face? Poof! Liquid shit.)

It’s funny, thinking back over my evolution as a short gut parent. This is the fourth time we have stopped TPN, and the second time we have pronounced ourselves line-free. The first time, a lifetime ago, when we were still with our old GI and before I had begun to make peace with the NOT KNOWING, we only stopped TPN because I pushed for it – and oh how I chafed when we were required to keep his line for a whole month before pulling it, just to be sure he could gain weight without it! And when we finally did achieve that golden pinnacle of line-free-ness, I threw a party, and I fought like hell when we began to move toward replacing a line and going back on TPN.

The second time we stopped TPN, I felt seasoned. I accepted the waiting period, or so I thought, because I knew exactly what kind of hell it had been the previous summer when L’s nutrition slowly failed. But I still went to every appointment with eager anticipation that this time would be the day GI would give the approval to pull the line, or maybe this time, or surely now this one – and I made myself crazy, as seven months slipped by, with me always thinking this week would be the week, until a series of mild illnesses proved that L was not ready to be off of TPN after all.

The third time we stopped TPN, just about nine months ago, I was resigned to the process. I fully expected months on end of weight checks and labs and waiting just a little longer, and then a little longer still. I didn’t ask when we could pull his line (or at the very least, I didn’t ask relentlessly at every opportunity). And four months later, when TPN returned and we began discussing surgery options, I was not surprised. I didn’t fight. I knew he needed it.

And now, having just stopped TPN for the fourth time, I have completed my 180 degree swing. Last month, just two weeks after our last night of TPN, GI began talking about pulling his line by Christmas.

Are you sure? Shouldn’t we wait just a bit longer?!

He can do it, she said. He’s ready.

And so, just in time for the new year, we head into what I supposed you could call Phase 2 – although this is really more like Phase 2 version 4.0, and in reality, like always, we will just keep chugging along and hoping this doesn’t turn out to be Phase 2 version Samsung Note 7.

Although, you know, now that Ivy is gone, if Phase 2 begins to catch fire we can just toss L in a pool. He’s been asking to go swimming….

Look out, 2017. Next year is the first year of the rest of L’s life.

img_6020

Follow @ThisGutsyLife on Twitter

Oh Christmas Tree, Oh Christmas Tree, How Scraggly Are Your Branches

Posted on by
1

How Home Depot Saved Christmas

On this day last year, we were at the hospital.

(Are you starting to see a theme here?)

One year ago today we had to have L’s line replaced. It was a Wednesday, and we had spent all day that Monday in the ER trying to clear a clotted line to no avail. Since that Tuesday was the day Santa came to L’s school, and also the day we were having out-of-town friends over for dinner, and also the day I had a big job interview, they agreed to let us wait until Wednesday for line replacement surgery.

All of this coalesced at exactly the wrong time, and so it was we found ourselves in search of a Christmas tree on the afternoon of Christmas Eve.

We had meant to go get our tree a number of times in the weeks leading up to Christmas, but between weekends of travel to early holiday celebrations and multiple hospital admissions for fevers and a jaunt to same-day surgery for ear tubes, we kept putting it off. The delay wasn’t a big problem for our holiday preparations because we don’t decorate the tree until Christmas Eve, anyway, because we’re weird like that. We had planned to finally for-real-this-time go on the Monday before Christmas, but that turned into the aforementioned trip to the ER instead. And because I was paid hourly at the time, and had already missed a number of hours of work for ER + job interview + line replacement surgery on the most expensive week of the year (thanks a lot, Coca Cola Santa Claus), I went in to my office on Thursday – Christmas Eve – until it closed in mid-afternoon.

And so, around 4 pm on Christmas Eve, we set out in search of a tree.

It had become a family tradition to get our tree at the Ted Drewes lot, because who doesn’t think it’s a great idea to eat frozen custard while freezing your tuchus off outdoors in December? Plus, they put a whole slice of pie in their pumpkin pie concretes. A WHOLE SLICE*.

*This post is not sponsored and all opinions are my own. But if Ted Drewes wanted to sponsor this post (hint, hint), I would eat the shit out of some free pumpkin pie concretes.

But when we pulled in to the Ted Drewes lot, it was bare.

Only mildly daunted, we climbed back in the car with a sprig of mistletoe and a pumpkin pie concrete (it’s tradition, after all) and headed up the road to a little local garden shop we knew had trees on their lot. But as we pulled up, we saw a truck loaded up with the last of their Christmas trees pulling out of the parking lot.  

Seeing as how it was approaching evening on December 24, we realized that this might be our last chance at having a Christmas tree that year and did the only logical thing we could think to do at that moment – we followed the truck. We tried pulling up next to it and waving our arms like maniacs; they didn’t notice. We tried to wait it out to see if they would pull into a gas station; they didn’t. We followed them all the way out of the city in hopes that we could not-at-all-creepily ambush them at their destination and talk them into selling us one of their remnants, but they just kept driving. Finally, we lost them at a poorly timed traffic light and realized we needed to move on to plan C.

We headed to the closest Lowe’s and inquired about their remaining fresh Christmas decor – Nada. Zilch. Zero.

At this point I was starting to fear that our procrastination and bad medical luck had ruined Christmas on the first year L was old enough to actually know what was going on, but Z kept a cool head and began making calls, and at last managed to find a Home Depot several miles away that was still open and had not yet gotten rid of the remnants of their holiday cheer.

I don’t know if you’ll want any of what we’ve got left, they said. But if you come right now, we won’t load it up until you get here.

Away to Home Depot we flew like a flash, rushed to the garden department and checked out their stash. And what to our wondering eyes did appear, but … the sorriest collection of scraggly, squatty, half-dead trees that ever has existed ever.

Per tradition, we inspected our options and carefully select the biggest, most magnificent tree of the lot. It was barely as tall as I am (which is not saying much), and was half bare and shedding needles by the minute had so much fantastic space for ornaments! The kind souls at Home Depot sent us on our way free of charge, and in the spirit of the season gifted us a free (only slightly smushed and browning) wreath to boot. And as we carried our Charlie-Browniest of Charlie Brown trees out to the car, I imagine the other shoppers must have thought I was lamenting the pitiful merchandise we were walking out with — when in reality, I had tears streaming down my face because, after the madness of that week, I was so gosh darn happy we had a tree at all.

decoratingWe took it home, and we decorated the crap out of it. One of us (not naming any names here) took special care to especially decorate the crap out of this particular spot right here which just happened to be about 2 feet off the ground.

And you know what? It was beautiful.

Whatever you are searching for this season, may peace and kindness find you and keep you warm. Happy holidays, from our Gutsy family to yours.

LukeSpot.jpg

Gutsy Surgery: A Joy Project

Posted on by
Reply

I recently discovered a photo series, created by the mother of another little short gut warrior, that depicts the stark contrast between how we view our experience as parents and how our children view the same things. I love the images and the sentiment, but, being a nasty cynic committed to raw honesty, I couldn’t help but think how little time our children have to enjoy the pure innocence and joy she attributes to the perspective of her son before real awareness begins to set in. The past few weeks have proven to me more than ever that even at three, even though he seems to be infinitely resilient, L understands that something is happening to him that maybe shouldn’t be; that pain is not normal and not okay. He knows his friends don’t have lines and tubes. He knows his friends can have cookies and he can’t. And last week when we were admitted for 48 hours for a fever (standard procedure with a central line while they rule out line infection), we also got to take a trip to ER radiology because he told the ER doctors his belly hurt – because last time he was in the hospital, they made his belly really hurt, and he was afraid they would do it again.

And yet – in spite of all that, his pain does live alongside a deep and abiding joy, sometimes within seconds of each other. When I picked him up from school and told him we were heading to the hospital last Monday, he shrieked and jumped up and down with excitement.

It impresses upon me more than ever that I must teach him that it is okay to be angry and sad sometimes about the difficult things life has handed him, and also that that anger and sadness don’t have to replace joy, but instead can live alongside it. I don’t quite know how to teach him that; but I think it may be my most important job as his mother.

And so, inspired by Emerson, and by Emerson’s mama, let’s talk about all the many happinesses we have found during our gutsy surgery journey: the train table in the playroom, the clown doctors and the dog therapists, and the importance of a hospital that understands the profound healing that is brought about by happiness. Here is a look at joy.

There’s this view of the sunrise:

sunrise

There are wagon rides:

wagonride

There’s plenty of doctoring to be done, and an endless supply of bandaids:

bandaids

You get to wear your jammies all day, and you get extra snuggles.

There are Darth Vader toes:

pulseox

There are furry visitors:

And funny visitors:

clown

clown2

And visitors who are so exciting he can’t bear to look away:

img_5768

And there are visitors who are absolutely terrifying, but still somehow know that Thomas minis are his very most favorite of all:

There’s a train table that provides endless hours of fun, and also the motivation to take not just one first step after surgery, but to turn that first post-op step into a dozen steps because Thomas really needs to drive to the other side of Sodor. 

There are superheroes:

img_5766

And there are real-life heroes:

firefighter

firefighter3

There are poops to celebrate, and a whole floor full of people who understand just how much celebration those poops deserve (don’t worry, I’ll spare you the photo here – although I have quite the collection!)

There is midnight construction thanks to staff who know exactly where to find “ya bulldozer and ya frontwoader yat were so fun in ya pwayroom a couple a weeks ago”:

img_5761

There’s the pride of completing his very first 24-piece puzzle all by himself:

img_5779

There’s a neat phone you can pick up that makes pizza and grilled cheese (and occasionally a few vegetables) show up right at your door:

img_5784

There’s a garden to explore that contains the whole world:

garden-world

And there’s the day the garden transforms into a winter wonderland:

img_5785

Most of all, there are friends. I can’t post pictures of most of our friends (thanks a lot, HIPAA) but there are so many, many moments of connection, big and small – with other children and with their parents, who are probably the only people in the world who truly understand; with friends and family who are pulling for us from all over the world; in visits from new friends we never would have met if we hadn’t been thrown onto this path; with nurses we’re meeting for the first time but who treat us like family, and with nurses who have come into our lives and have come to feel like part of our family. At the beginning of our journey I felt so incredibly alone, and I have gradually, and painfully at times, come to feel like part of an incredible community.

In my last post I insisted that happiness and the ability to thrive is not incompatible with continued struggles. But even now, when things are going well for L (and they are indeed going well, more to come on that soon!), I occasionally need to remind myself that continued struggles are not incompatible with happiness. Yes, there is pain. There will always be pain in the world, in all kinds of forms. But alongside that pain, and in spite of it, lives joy.