Season Of Stress

Summertime usually invokes thoughts of hot days on the golf course, cool swimming pools, pleasant warm nights in the backyard for a BBQ, campfires and time with friends.  Obviously, this year, summer has taken a wrong turn and sent us down a completely different course.  Sadly, this course is not green, filled with trees, and I'm not hunting a little white ball with a stick in my hand, cursing under my breath, *silently laughing.*  This summer is not only filled with none of the usual fun activities, but even the weatherman has made a change. Our summer weather has been weird.  It's been cooler, cloudier, more like a spring or a fall.  It's been a very odd season, in more ways than one.  I find it amusing that this odd summerlike weather has really matched our mood, and I'm rather relieved that I'm not staring out this hospital window everyday wondering how wonderful it must be outside these sterile walls.  It's been refreshing that I'm sitting in a season of stress, and the regular summer season hasn't appeared to torture me with what I'm missing exactly.  I'm not missing out on our usual, glorious, and much-too-short summer weather.  The same summer weather that makes this city bearable through the long, endless rainy months.  The summery goodness that people visit and fall in love with our city, to the point of moving here.  It's the wonderful warm goodness like a fresh baked chocolate chip cookie, right out of the oven.  Yep, it hasn't really shown itself in it's usual form this year, and I can't help but selfishly be thankful for that. Sometimes it's odd how life just sort of helps you out in funky ways like that. 

Andi Bean is on for surgery first thing tomorrow morning.  They will wheel her off between 6:30 - 7 a.m.  We're staying here tonight, so we can have some really good family time before the biggest, probably most difficult day of our entire life.  This is the big one.  This surgery can and will make life so much better for the Bean.  I hope this is a one-time surgery.  I hope that everything goes better than 'GREAT'.  I hope she recovers faster than they ever expected.  I hope to report only good things on the flipside of this nightmare.  Finally, I hope that as tomorrow is September 1st -- a month that equates the start of fall, football, leaves turning glorious colors, I hope with the start of a new month, a new season can begin for us and the Bean.  I hope that this season of hell can end and we can begin a renewal or rebirth, and live out a healthy life filled with much love and well-being.

Good vibes people, good vibes.

Thelma, Louise & The Binky

Yesterday when I arrived to spend not nearly enough hours with the Bean, the TV in her room was featuring the movie, Thelma & Louise.  I was kind of curious if it was a subtle suggestion that the Bean try to break out of this joint, or the Bean stop tolerating all undesirable behavior toward her?!  As long as she gathered the message that it is super cool to be a strong, independent women, I'm okay with her choice of movies.  Plus, a young Brad Pitt... uhm, HELLO!?!?  Not a bad choice, my dear.

Cardiology stopped by this morning and checked on the butter bean.  They said that surgery is looking likely for Wednesday, but it's really up to the Bean.  There are two reasons that she could be postponed again:  a fever + low white blood count, not necessarily just a fever; an emergency.  But as of now, this minute, heart surgery on Wednesday is looking likely.

The family flies across the continent yet again. Too bad I can't accrue frequent flier miles based on days spent in the hospital.  Our first stop when we finally get medically cleared, is a weekend at the super nice hotel at the beach. This family needs a mini-break, fur-baby included. Bring on the crab dinner.

It's become increasingly clear that there is one thing we can never be without, the binky. Andi Bean loves her pacifier, has since birth.  Since she doesn't yet bottle, this is a great sign that eventually she will.  But, in the meantime, it's one thing that really calms her down from a hissy fit.  So, maybe she'll soon break out of this joint, strutting her new found independence.  Just be sure she packs the binky, and no one will get hurt.

Shift Change

It's Sunday.  Last day of rotation for the attending pediatrician.  How many of these have we seen come and go?  I don't even remember all their names, but I would recognize all their faces.  It's really troubling to realize how many have been through here.  They leave and we remain.  Ugh.  This week we actually had one of the first Dr's back in June stop in to see the Bean and say hi.  She said that so many Doc's that have worked with us, follow us in the computer, and are cheering us on.  I've heard that from the 3rd year med students too.  Even though there have been quite a few shift changes or rotations, they still keep up with our Bean. 

The blood work today is still positive.  The chest x-ray "looked about the same" which isn't necessarily bad, it takes awhile for the healing to show up on x-rays.  She might be getting a little dry, and they might have to stick another IV in for another bolus of fluid.  The balancing act continues.

Right now, she's sleeping comfortably in Daddy's arm.  She is having another good day.  Tomorrow the cardio/surgeon team is going to make a determination about surgery on Wednesday.  I have no idea if they're going to want to move forward this week or not.  But the new attending pediatrician comes on tomorrow.  Perhaps this one will have the magic potion to fix the bean.

Resilient Bean

Spoke with the Attending, and he said the Bean is doing well.  She hasn't had any spit-up's, major leakage, or any other sort of problems lately.  Her IV fell out overnight, so, they've switched her antibiotics to the G-Tube.  The surgeon resident-du-jour is supposed to come by to discuss her G-Tube with me.  I'm guessing he wants to explain why we shouldn't take that .5 ml of water out of the balloon.  Since she's doing so well lately, I'm afraid to make ANY changes.  However, if she does start to have spit-up issues again, we're going to try the NJ tube again with lots and lots of med's prior to.  Wow, I've been heard!  Kind of empowering.

We're going to do another chest x-ray tomorrow, as well as labs, so that the Attending coming on for the week on Monday, has current info.  As of now, Saturday morning, all indicators would point to her surgery being on schedule for Wednesday.  But one upchuck could aspirate those lungs again and we could be back in wait n' see mode.

I have to admit, I can't stop watching the video I shot of her yesterday.  It is an amazing testament to the resiliency of babies that she laughs, smiles and let's her lil' personality shine through.  If you could see her hands & feet closely, you'd see pin pricks galore and bruises, from all the blood draws, IV insert points and remnants of days past.  I hope to look back on this time in our lives and sigh with relief -- having put this hospital living behind us.  I know she will never remember any of this, other than bonding us tighter than ever, but, I will never forget or relax from this experience. Savor every moment.  I hope to really embrace that as a way of life.

Direct From Doernbecher's -- It's The Bean!

We shot some video of the bean today!  Had to break it up into three parts so it would upload!

PART 1:  TONGUE

PART TWO: SMILIN'

PART THREE: WAVIN'

Speaking Bean

Yesterday, the ENT resident was able to get a 5French (small tube) down Andi's left nostril. However, she didn't put it down very far.  They check placement of this type of tube with an x-ray.  The x-ray showed that she didn't even get it down to her stomach.  Don't know if she wasn't paying attention or what!?!  With the NJ tube, you want to get it down to her stomach with slack curled down there so it can work its way into the intestine.  She's had an NG and OG tube before, that goes directly into the stomach - through the Nose or Oral.  This one is a little more intense, as it's past the stomach and it takes a few days to work it down there.  Have I mentioned recently that Andi's in a class by herself though?  Oh yeah, the standard does not apply to the bean...she's going to set those rules.  The bean's nose was opened back in June, with a revision later that month to clear out scar tissue.  The fact that they couldn't get a tube bigger than a 5French indicates to me that they'll probably need to do another revision and clear it out some more.  It was explained to us in the beginning that most cases, the choanal atresia repair often requires 3 surgeries to get the passageway open and keep it open.  So, here's this 5French tube shoved into her nostril -- the nostril that is more open than the other.  Common sense would indicate that having something in her nose, well, that would make it more difficult for her to breathe.  Not only that, it's uncomfortable in the beginning, until you get used to having it there.  So, Andi wasn't having it.  She pitched a fit, and was inconsolable.  Not something you want of a baby you're trying get bigger... as pitching a fit causes her to burn more calories.  Not being able to breathe as well, despite being on minimal O2... again, not working so well.  They increased her O2 a bit last night, but we had to lobby on behalf of the bean.  Demanding that we rethink this plan. 

I understand why we want to do the NJ, and actually agree with it.  You bypass the stomach so you don't have reflux, and thus, loose the calories we're trying to get in her little body.  Also, when she refluxes, she's breathing so hard that she can inhale the formula coming up from her stomach.  This is called aspirating the lungs.  So, the NJ tube will help minimize the risk of aspirating the lungs again and causing potential pneumonia (what they think has occurred twice these past two weeks).  We need her lungs in tip top shape for the heart surgery.  Thus, I understand the need for the NJ tube.  However, again, Andi writes her own rules.

Apparently last night, sometime after we left, Andi bean pulled out her own NJ tube.  It wasn't in very deep, not even to her stomach...so that's easy enough to do. Even when one of her hands is bound with an IV in it and the tube is taped to her face.  The tube was making her work even harder at breathing, and I'm honestly a bit relieved it's out -- despite agreeing with the premise for inserting one.

So today I've made some demands.  I've been saying all week that I've felt that a lot of her spit-up and G-Tube leakage grew worse when they came in a blew up the G-Tube balloon more so.  There's a balloon on the inside of Andi's stomach that they blow up with water to pull the stomach to the abdomen wall.  They control the size of the balloon with water, and that helps make the tube sit flat and adhere to the ab wall more so.  However, for a little baby such as Andi, in my mind, blowing up that balloon on the inside of her stomach, even a small amount, leaves less room in her stomach for processing things like formula.  She's on small, continuous feeds -- 24 hours a day.  She gets less than 1 oz. an hour, all day long.  So, since they've blown up that balloon, it not only caused more spit up, but she's also had more leakage out of the tube site.  It's almost as if she gets any pressure in her stomach, it finds an exit out of a small part around where the tube exits her skin.  So, I've asked them to not only reduce the water, ever so slightly, to back to what it was... and I want her put on the infant gas med's four times a day again, as it was, instead of 'as-needed'...to help minimize her gas pains.  She's very vigorous with her pacifier and that, along with when she cries, is a time where she sucks in air.  Venting the g-tube hasn't really produced relief either.  It seems like the gas hurts her before it comes out, not when it's in her stomach.

So, there's a lot more detail than people probably want to know... sorry, this is my daily world... and I'm pretty immune to all we have going on.  Let it be said that all of us have the same goal... get Andi in her best possible shape for surgery.  Cardiology is going to revisit her today to see how she's doing, and make a final determination on Monday to decide if we're on for next Wednesday, or not.  The Dr. still wants to get the NJ tube in, but, not sure if/when that's going to happen.  I laid down some rules if we do try again.  There will be pain med's issued prior to... get her as chilled and comfortable as possible.  I understand the reasoning to do the tube, but I also have to advocate for the bean. She is sass-o-frass... and she's telling them, 'nuh-uh - I don't think so.'  Very few speak bean... that's what makes it very difficult to leave each night.

Bob Barker & The Magic Wand

Sometimes I feel like Andi Bean is a science experiment.  The constant poking, prodding, trying this, switching to that... I know she is tricky and keeps throwing curve balls, but, for the love of the bean already!  The fever broke yesterday before the first dose of antibiotic was given via IV.  Just in case it is pneumonia though, we're going to run the antibiotic for a few days and see how she does.  She gets her daily blood tests and chest x-rays are every few days.  Yesterday's x-ray was worse than the day before.  However, she seemed better yesterday.  Seems even better today.  She sleeps.  Earlier today, she was smiling at me.  It was the most incredible thing.  I tried to get it on camera, but not quite sure if I caught it.  She hasn't had much to smile about, so, I was amazed to see that she felt otherwise.

The Attending reiterated that the goal is to get Andi as big and strong as possible, getting her ready for surgery.  Feedings are an issue.  They increase the calories, her stomach revolts.  They increase the volume, her stomach revolts.  She's on continuous feeds and they don't want to mess with the current volume, speed, nor content.  She's had some reflux vomiting and some leakage out of her G-Tube, and that makes it difficult to tell if she's getting enough.  At 3 months old, she's put on less than 3 lbs., mainly because it's like she's on the stair master in the gym, all day long.  In order to help her with the reflux, the g-tube leakage, and make sure they get in as many calories as they can, and help minimize loss, they want to put in a NJ Tube.  A NJ Tube is a tube that goes up her nose and down past her stomach into the intestine.  The nurse who has her today revealed that she does them often, and other nurses usually ask her to do them, as she has the touch.  When I returned from a break, I learned that she tried and could not get the tube up either side of Andi's nose.  Therefore, the ENT resident is going to do it.  She just sprayed some junk in Andi's nose and is going to come back soon, spray some more and try to get a smaller tube up there. During her heart surgery, ENT is going to scope her nose while she's under sedation and check out how her choanal atresia repair looks.  See if they need to clear out any scar tissue.

I understand why they do everything they do to this baby girl.  They explain everything in great detail, encourage me to ask questions, and all that... However, medicine is science. It is not exact. It is not easy.  This is a teaching hospital.  And their motto is 'Where Healing, Teaching and Discovery come together.'  In our case, I'd prefer a lot more healing and a lot less discovery.  I just have this unrealistic vision of Bob Barker strolling out from behind a curtain with a magic wand and with one wave of his hand, and of course a plug for animal rights, and voila! the Bean would be magically healed. That'd be a lot more fun than the different variations of  "we'll see", "it' depends!" and "it's up to her" I hear repeatedly.