Sunday, May 4, 2014

Debridement and Nourishment - The Feeding Therapy Experience



Forgive a little vagueness, again, this is the story of a family, not just mine, and it's only what I see and feel, that I can say.  And there are some things that don't belong on the Internet, even for me.

When a wound occurs, like a burn- a wound likely to catch infection and fester into something worse- it's treated with a process called debridement.   Debridement is awful. It's basically vigorously scrubbing out an open wound to eradicate all possible sources of infection. It is raw, it is excruciating, and it is sometimes more traumatic than the wound itself.  But before the wound can begin to heal, all of the filth and bacteria must be eradicated.

If you've called or texted or facebooked without a response, I'm sorry. You see, I have been debrided. I have been scrubbed and disinfected to the very core, until I stood without my skin. Completely exposed, flesh and bone and no protection, whipped by the elements.   As if being baptized in agony could rebirth me. I have struggled to breathe. I have teetered on the precipice of the great, yawning chasm of black empty space and wiggled my toes into the abyss.   I have bled and I have wept until my face dried into an unrecognizable, red and wrinkled mess, dehydrated from endless swipes of a paper towel in an attempt to appear sane and rational.

I have spent sleepless nights listening to children cry for their mothers in the empty, echoing corridors of a hospital. A little boy whose legs did not propel him.  He could not get out of bed, his mother was absentee, so he simply called again and again, 'hello?' for hours, until his voice cracked and his calls gave way to the choked cries of an abandoned child.  My heart, already raw, had no filter for this kind of torment.

The sun has risen and set each day regardless of my ability to cope with life as it presents itself. The calendar does not wait for me to get my shit together and my children don't stop growing and needing so that I may collect my wits and carry on. The garbage still has to go out, the dinner has to be made, the clients attended to...

And in the midst of all of this, a gift I didn't foresee.  Jackson completed feeding therapy in record time, and was able to completely eliminate tube feedings from his diet. From 1400 calories through the belly (or 85% of his daily needs) every day to everything by mouth.  It has been almost two weeks since he was plugged in.  Here at home, I'm finding some feedings are needing less structure.  Tonight I watched him nearly inhale 5 fish sticks and chocolate laden high cal formula.  No prompting needed. I feel a little guilty that maybe I haven't been fully appreciative of this miraculous turnaround.  This child who had lapsed into being almost exclusively tube fed, cramming food into his mouth, two bites at a time. The little changes in him- different behavior. Better coping skills. Hunger. Mommy, I want fruit snacks.  The boxes and cans of food in my cart that I never in a million years would have bought (packaged and processed, lord have mercy!) but am now almost giddy to schlep up to the checkout.

And just like he was taught, day in and day out, in a place so full of suffering, to take one bite at a time, so was I.  So many things I've tried to fix by elimination.  'If I don't eat this, say this, think this...it will get better. I'll be able to avoid the pain. I'll be able to do what I have to do. Everyone will like/understand/support me.'  When maybe the whole time I should have eaten some metaphorical processed, canned ravioli and been happy to eat. Sometimes Chef Boyardee is freaking delicious. The more possibilities for 'failure' I eliminated, the more I narrowed my experience and my ability to cope. I limited my own happiness to the point of being starved for it.


So now, as I pull fish sticks out of the oven, measure out 57 grams of Lays potato chips and load the formula down with Hershey's syrup, I can be thankful. I know the steps to take for Jack when he won't take a bite.  I've helped him learn to eat.  And in the process, I'm taking bites of my own life, too.

Monday, April 7, 2014

Strong

It's 6:43 and the car is packed and ready to go. The kids will be up in fifteen minutes and in two hours we'll be on the road to one month in feeding therapy.  Of course we can do this.  Of course.  And I'll blog it all.

Something I hear a lot because of my writing and the people it reaches is how 'strong' I am. It's flattering, but always so very alien. I don't feel strong.

Strong doesn't mean attacking all your problems with a battering ram. Which I have. Strong doesn't mean shutting out the people you need the most because you're afraid. Which I have.  Strong doesn't mean being a hardass all the time.  Which I have.

Being truly strong means knowing when to yield. Knowing how to be present and not controlled by fear. Knowing that some things are more important than protecting yourself.

In an effort to be 'strong', I have been destructive.

Maybe now I can begin to learn how to be softer. Maybe I can learn to let the light in. Maybe I can be given the chance to show that 'strong' and 'tough' are not the same thing.  Silk thread is strong.  Leather is tough. Dried out jerky is tough. Life is tough. I don't want to be.

Monday, March 31, 2014

Q & A





Today we toured the facility that J will be living in for the next month while he undergoes intensive feeding therapy . We got most of our questions answered, and it occurred to me that I have been getting a lot of the same questions from folks, so it's time to answer some of YOUR questions.  Here goes:



People with CF need a high calorie (at age 4, J needs as many calories as an adult man), high fat, high protein, and high salt diet. Because you can't just convince a baby or toddler to eat thousands more calories after they're full, Jacks had his G Tube placed when he was 15 months old.  He gets an extra 1400 calories every night to help him grow and stay strong.  A higher body weight for him means an increased ability to fight infection and a higher lung function.  Yes, he still eats by mouth.  But not much any more.  Because he hasn't HAD to have the same oral sensory and motor experiences as other kids, he has slowly, at times, imperceptibly, stopped eating different textures, taking smaller and smaller bites, and progressed to sometimes just not eating AT ALL.  Other factors in oral aversions can include things like the fact that he threw up for almost a solid month between November and December.  Sometimes his meds might make things taste funny, or his sinus problems mean he can't taste well at all, or doing his vest made his belly feel rumbly.   There are a lot of factors, a lot of possibilities.  We can't rightly nail them down individually, but as a whole, they've pushed him into a cycle that makes your average picky eater look like Kobayashi next to him.   



So what do we do? We go to feeding therapy. Behavior modification.  We have chosen to follow the recommendation that Jackson move in to a children's rehab facility that specializes in this kind of problem and has VERY high rates of success.  He will stay for a month, working with a speech/feeding therapist, Occupational therapist, physical therapist, and behavioral psychologist, in addition to a supervising physician.  He will do actual mealtime therapy 4 times a day, for the duration of his stay. We will learn new tactics to cope with  his aversions and encourage better eating habits.  We will meet with the whole team every week to discuss progress, goals, plans, and any hitch in the gitalong.   .

We are lucky to have family and friends willing to fly, drive, call, mail, fax, carrier pigeon,  and teleport into town help us.  Bet nobody teleports for you, do they? Well, don't feel bad. I might have exaggerated that part.

Other answers- yes, we would love and appreciate any help anyone is willing to give us during this '30 day challenge'.  We just don't know what we're going to need help with yet. No, this is not an urgent hospital stay like we do at Cook's. There will be no IV'sor PICC lines, and we'll administer his daily meds ourselves, just like we do at home.  No, he's not 'done' with feeding therapy at the end of this stay.  But he will have a huge jump start, and we will have the tools to keep moving forward, and with a little luck and a lot of work, THIS will not be our biggest road block anymore. And we will be way tougher when we get to the next one.  That's how it works! It doesn't get easier, you get better.   A stolen quote I can't attribute to anyone because I saw it on Facebook. 



OH!-and   PS- I didn't have to copy or paste ANY letters for this blog.  After I shared my keyboard drama in the last post, some wonderful, anonymous person came to my work and left an envelope with enough money to buy myself a spiffy new keyboard.  I can't for the life of me figure out who it was, but THANK YOU. You made me and a few of my coworkers tear up.  And I promise to both pay it forward and keep writing and raising awareness.   

Sunday, February 23, 2014

On Suffering and Sanity: an Impassioned Plea for All of Us



Most of the people reading this have a connection to me. To my own struggles and strengths, and what I call 'normal'. I can only tell my story in first person. I can't tell you what it's like to be my son, my daughter, my husband, my family, or my friends. I struggle when I know that I cannot hide my pain from those who love me. I want to be stronger when things are harder. I want to comfort those who would worry about how I am handling the curve balls. I don't want what hurts me to spiderweb out around me. And I don't want to make what I feel the sole focus of my mission. I believe that whatever put me here, put me here because I have the power to do something to make it better. In some small way, what hurts me should make me able to help someone else who feels what I have felt. Helplessness. Sadness. Frustration. Anger. Guilt. Fear. And a desire to escape all of those things from time to time.

There was a time when all of those things bonded together and made me crazy. Let's get real.  Genuinely crazy. There was a moment in my life where I didn't sleep for days, and feared the noises outside my window. There was a time when my affection for zombie movies made me fear that the undead were outside my window and I had to stay in pure survival mode and protect my loved ones from being eaten alive.  But it was me who was being eaten alive.

I could have known that I was a carrier for CF. I could have had simple tests run that would have let my husband and I know what we were headed for when we chose to have children together. I made choices, that in the moment seemed so insignificant, that came to impact not only our lives, but those of everyone who knows, loves, and supports us. Things that I did without a second thought have caused pain and worry to everyone I know and care about. For the most part, I can understand that there was no logical or reasonable way for me to know that when those choices were made. But it doesn't stop them from continuing to impact all of us to this day, and from here on out.  Guilt is not a feeling I'm a huge fan of. I do my best to let it go and treat myself like I would treat anyone else I love. But that hasn't always been the case. There have been many nights that guilt ate my heart out in the dark.

Recently things have taken a turn that has given me reason to reflect on guilt, the suffering of others, and my role therein. I have had moments to look at the pain of those I love and wonder how much better off they would be had they never given their love and trust to me. I toyed briefly with the notion, and even dipped my toes in the pool of 'crazy' once again. But god help me, I am not ready to dive in.  And I hope I never do, because getting out is so damned hard.

So I am here to share what little I have learned. Things will happen to you that make you question your value, your worth as a human being. You will play a role, however unknowing, in the pain of someone you love. Sometimes there is no way to know. Sometimes there is. Accident, mistake, freak of nature, genetic defect, whatever.  Chances are, you'll cross that bridge even as it burns, and there will be no way to go back to the way things were before.  And you might go crazy. You might make promises you don't know you can keep. You might hurt yourself, and you might hurt someone who is trying to help you. The point being, here, that when you come to realize that the undead are not eating your brains, you have a chance.  You have a moment in which to forgive yourself for anything you may or may not have done.  You have a moment in which you can choose to pilot the ship rather than let it sink.  In a moment where you can't help yourself, you might save you by helping someone else.

I've recently developed a mild obsession with the movie Silver Linings Playbook. The first time I saw it, I cried uncontrollably. And not because Bradley Cooper is just that gorgeous and so out of my league.  Because I saw my reflection in the story.  I saw how we are so vulnerable to our own crazy, how easy it is to become confused and mired down in suffering that stems from how deeply we love those around us, and how devastating it can be when that suffering derails all of our good intentions.

My plea to you is this. Please know that your suffering is not selfish. You are not simply feeling sorry for yourself.  You are not powerless. You cannot change the moments that seemed so insignificant, yet somehow changed your entire reality, and maybe even that of everyone you love.  You can't take them back. Fate can be a bastard.

None of it takes away your worth. You still have the power to make things better.  You have the power to wake up every morning and tell your demons to piss off. You still have the breath to fight back. You still have a reason to care about what happens to you.  And you still have people like me, just like I have people like you, to fight alongside when the days are dark and you're not able to do it alone.  You don't have to ever do it alone.

At some point most of us live through that unrelenting moment that changes the rest of your life into who you were before, and who you are since 'it' happened.  You might not know how many of us are standing on the other side. But we are here, and we promise, you do not ever have to be alone.  Just raise your hand, and I will reach out mine.

Friday, January 17, 2014

bootstraps


Preface- This post is very, very long, and as much as it pains me, I have to ask you to forgive the capitalization errors. My keyboard is broken, so every letter 'b' you see had to be copied and pasted in, and seeing as it took me over two hours to do that, I can't pain myself to go back right now and capitalize some of them.  


AVOIDANCE

Instead of sitting down and writing this post, I laid down on the couch and took a short nap after getting Jackson into bed.  However the nagging little voice inside my head wouldn't let me sleep.  I've written maybe two blogs in the past year.  I've spent a ridiculous amount of time wondering how much sharing I should do.  How important is sharing our journey with other families, versus how important is it that Jackson isn't able to give me permission to share such intimate details of his life? As I sit down to bite the proverbial bullet, I have no idea what I'm about to say.  Only that I've been quiet for too long, and it's time to get back to work.

And aside from that, we've spent what time we can having, what is to us, a normal life.  And a not so normal life.  but the emails started.  And the postcards started.  And then in the past few days, I have seen many of our fellow CF families launch their Great Strides fundraising campaigns for this year's walk.  (Every year, we have a team for the Great Strides walk , benefiting the CFF to raise money to fight Cystic Fibrosis)  And I'm unable to be passive any more.   

Last year, we didn't do a big fundraising event like we usually do. As a matter of fact, I did little beyond the walk and online fundraising.  As the years have gone by, our team has dwindled rather than grown.  Our donations have tapered off rather than increased, and fewer people have attended our events.  That is not to say we haven't experienced incredible generosity from or friends and family.  It is always absolutely humbling to watch how people give of themselves, in essence, to save my child and his entire CF family.  but the support we had in the first year of his diagnosis has trailed off, and my efforts to put together a successful fundraiser have likewise been met with dwindling enthusiasm.  I hate to say it out loud at all, because I have had the support of some fantastic people to make it happen, but I feel like I've failed, and last year I let it keep me from trying again.  I'm not sure what I'm going to do this year, but I'm about to tell you why I have to pull myself up by my bootstraps and try again. 

I don't really want to talk about it.  I don't like seeing it all listed in print.  It makes me sad and scared, and my mom reads this, among other people who love me, And it hurts her and them to see me sad and scared.  but truth is paramount, and the truth is…the last year has been HARD.  Hard is relative, I understand.  I've watched other mothers lose their children to this, and other diseases.  My hard is not the only hard.  but nevertheless, I am uncomfortable in the moments when I can't smile and say 'it's ok'.  

This year in Cystic Fibrosis:  (PSSST….THIS IS THE REALLY LONG PART)
Last September, Jackson got a sinus infection, one month after getting out of the hospital for the standard ten day stay. He did a ten day course of antibiotics, and the infection came back.  He did another course of antibiotics, and a course of antibiotics with steroids, and then a longer course of antibiotics.  The infection would seem at bay as long as he was on them, but within three days of completing a course of meds, his symptoms would flare up again.  We dodged another hospital stay in December, and tried one last, long term course of daily antibiotics to give his body the chance to eradicate the symptoms on its own.   As spring rolled around, he was still unable to function without the antibiotics, and we were also facing the fact that Jackson wasn't on track developmentally.  The summer brought every kind of developmental test we could fit in to figure out what exactly was going on.  Developmental pediatrician, hearing and vision tests, referrals to physical, occupational, and speech therapy, and the referral to an Ear Nose and Throat specialist for the snot that ate Manhattan.   As far as the developmental aspect goes, we don't know what caused Jackson to experience delays.  Statistically, children with pre-existing conditions that cause them to spend extended amounts of time in hospitals or undergoing extensive treatments for those conditions are more likely to experience these sorts of delays.  Ultimately, the cause was not as important as helping him be the best HE could be, and live his own best life.  He began physical and occupational therapy, and we paid our first visit to the ENT.  The CT scan of Jackson's head made it clear that it was time to take action against the demons playing inside his sinus cavities.  You might wonder why 'they' didn't take decisive action sooner?  1- because sinus surgery on a 3 year old isn't antibody's idea of a party.  2- a scan of the sinuses of a person with CF will almost always look 'abnormal'.  We needed some more definitive evidence, before taking definitive action.  His CT shows that the swelling of the tissues in his sinus cavities had not only completely closed them off, but had begun to push his eye socket out of place.  One week before surgery, Jackson developed a seriously nasty form of bacteria called C Diff that threatened to keep him from surgery, and worse, stripped him down to about 32 pounds. We treated aggressively with probiotics and a different kind of antibiotic that would specifically target the bad bacteria, and were able to go forward with the surgery necessary to relieve his sinuses. 

ON October 18, Jackson had surgery to clean out diseased tissue in his sinuses and remove his adenoids.  His recovery was gloriously quick, and the three weeks that followed were fantastic.  The best of our year. He ATE.  I mean, he really ate.  Entire helpings of nachos, multiple slices of pizza, whatever he could get in his mouth.  It was like he could taste food for the first time in his life.  The second week of November, he got a cold.  It held on a little longer than a normal cold, but because he had just spent seven solid months on antibiotics and had battled  C Diff as a result,  giving him a course of antibiotics then was not the right call.  Around this time he also began to throw up his tube feedings.  Not every time, so we tried slowing them down.  We tried giving him zofran to keep him from vomiting.  His weight sunk down to thirty pounds, and his bmi dropped from the 60th percentile down to the 3rd.   Every vertebrae stuck out.  His hip bones were sharp.  The back ridge of his pelvis began to protrude, and his elastic waist, skinny jeans wouldn't stay up. Not only could I see each rib, but I could see the outline of where each rib connected to his sternum.  His collar bones stuck out, and his eyes were sunken in his face.  I glanced a picture of what he looked like a year before and I sobbed.  We consulted with his doctor and nutritionist and got approval to try giving him 24 hour a day tube feeds in an attempt to put some weight back on him.  If he didn't do well, he would be spending Thanksgiving in the hospital.    Over the weekend, 24 hour feedings and zofran managed to stack about 4 pounds back on him, and we were cleared to be home for the holidays.   Jacks and I made a quick surprise trip up to Nebraska to see my folks.  And he started throwing up again.  In spite of the joy of being together as a family, my Mom's eyes would follow him around the room with sorrow. It was impossible not to see the worry on her face.  And the day before we left to come back home, in the middle of a busy, noisy family gathering, my rambunctious child crawled into my lap and fell asleep, too weak and tired to play with the other children.   He was spiking fevers around 103. I looked up the Children's hospital nearby to make sure they had a CF center and made a contingency plan for scenarios I didn't really want to consider.  The next day we left early.  Jackson slept 8 1/2 out of the ten hours we drove home.  The following day was a Monday, and I knew we would be checking in to the hospital.  

We had a bag packed as we went in to visit the CF center.  As we waited to make sure a room was available, Jackson played and hid under the table, and didn't seem to feel as bad as we thought.  I prepared myself for the standard ten day 'tune up' that helps CFers bounce back when they're just a little too beaten down to do it on their own.  Two hours later, as we began to unpack our little suitcase in our room, he suddenly wasn't playful at all.  He cried and crawled into his hospital bed, and he didn't get out of it for four days.  His high fevers continued to spike.  He continued to vomit. His white blood cell count skyrocketed. His blood pressure was abnormal.  A small spot of pneumonia in his lungs bloomed into a full-scale war inside his chest.  My baby wasn't in for a tune up, my baby was in for a fight.   During his PICC placement, he was on 6 liters of oxygen. (that's a lot) He was in acute respiratory distress. There were x rays, blood  draws, blood cultures, sputum cultures, vital checks every 4 hours, nurses with worried faces, and the fear that we were headed for the PICU if things didn't look up.  As the labs rolled in, they confirmed that everything he was fighting was viral.  Around day five his fevers stopped, and his whole body broke out in a rash.  He began to eat a little, and slowly began to tolerate feeds.  by late day 7, we had hope again.  We managed to make it home on day ten.  

In the month since we have been home, our main goal has been to fatten our little dude up. His tube feeds have supplemented him with 15000-1900 calories a day.  And yet he's roughly the same weight he was when he was discharged from the hospital.  We have watched his appetite turn to nothing. He has suddenly begun to have a total meltdown any time it's time to take his enzymes (which is at every meal and snack).  He has also thrown up a couple of tube feedings, and spent over two days refusing to eat ANYTHING.  We have an appointment on Monday, at which we will do some more digging and try to uncover what the hell is going on this time. 


This has been one year in Cystic Fibrosis for us.  A disease that progresses with age. I can't do nothing just because feel like my last efforts weren't good enough.  I'm not fighting just because I don't want this for Jackson.  I don't want this for your child.  I don't want this for my friends.  I don't want this for ANYONE.  We are coming SO CLOSE to treatments that can give people with CF a 'Normal' lifespan.  We are so close. Sitting in the hospital, watching my child struggle to breathe, watching the flesh shrink  into bone, and we are SO CLOSE, but we are not there.   We have to get there.  And I need you to help me do that.

This is our Great Strides Team. Click through and join us. Help us.  Ask your friends and your co-workers, your bar buddies and your golf pals, have a little contest at work. Shoot me ideas.  You don't even have to be AT the walk to be on our team.  but I am asking you to join us.