Friday, December 9, 2011

At Home and Abroad.

Ok, so, not really 'abroad', but it sounded better than "At Home and a Short Flight to New England".
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Our move is over. We are, of course, up to our ears in renovations and honey-dos in our very first home, but it's a labor of love, and we want to ride the new house high and get as much done as we can before DIY malaise sets in. The urge to do everything immediately is hard to resist, but we are here for the long haul. The house is quiet, the neighbors are good, and the kids LOVE it here. Jackson will no longer happily play in his room, but instead wants to run the open floorplan all day long as if he just found freedom. It's a sight to behold, and has taught us numerous lessons about 'baby proofing' versus 'Jackson proofing'. They are definitely not the same. If it can be climbed, opened, crawled in/on, knocked over, or otherwise hijacked, he has figured out how to do it. Normally I might feel exasperated at such a boundless supply of orneriness, but seeing him so in his element- clever, mischievous, happy, and playful, makes me too happy to complain. His health has been outstanding so far this winter- knock on wood. There have been some colds and mild infections, but nothing that didn't run its course or improve with some antibiotics. He hasn't even had to take a round of steroids yet. (tosses salt over shoulder) I have been sticking to my vow to not overprotect him. We didn't cancel our family photos because of a bit of cold air blowing in (although we did cut them a little short), and most notably, last weekend I let him play in a room full of other kids his age. I put him down on the floor to run around, share toys, and ultimately swap germs with nearly a dozen of his peers. It was harder than I would like to admit, but I knew it was the right thing to let him play.

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All in all, things feel stable. What a magical word. I know that for the most part, it is an illusion, and things are always changing, but in the immortal words of REK, "it feels so good, feeling good again.". (I also had to break from writing and listen to that song and remember how much I love it.) Having our own home is a comfort I can't really describe. I've never been one who really craved predictability, but every night I find great joy in doing the same thing. Dinner, night meds, put the kids to bed, and before I call it a day, I go turn out the lights in the kitchen, except the small one over the sink. I stand at the end of the hallway and marvel at the rooms in front of me, quiet, clean, comfortable...home. It's like a sigh of relief, every single time.

We are also getting ready to take the kids on a cross country flight. I couldn't possibly be more excited, as we're going to New York! Yes, my kids get to see New York at Christmas, and whatever anyone says, it's just as legendary a thing as you can imagine. Ice skating at Rockefeller Center, Hot Chocolate at Serendipity, Rockettes, Mary Poppins on Broadway, Times Square... I can not WAIT to experience it all through their eyes. I am doing my best to over prepare for the flight and security measures, because if nothing else, a detailed written checklist and travel plan makes me feel a little more in control of the variables.
We will have a letter from our CF team detailing all of the equipment we are traveling with, and a copy of TSA guidelines for traveling with medical conditions and equipment, just to be on the safe side. Unfortunately in my bid to be prepared I accidentally came across a couple of horror stories of CFers trying to fly and getting flack for their equipment or having G Tube formula confiscated. I'm not paranoid about it, but I will be very cautious that we know what we can and can't do, and what they can and can't do. And once we've done it, it won't be half as intimidating and I may even have a few tips & tricks to share.

That's life as of today. All of the big, complicated events that were my 'too busy to blog' blocks are now past events, and I have no excuse for not updating regularly. If you're kind enough to read, I'll be kind enough to share, even when things are delightfully boring!

Saturday, November 26, 2011

Amberlyn, Hope & Loss

l.QQZvWzsWIUiHkSPt This is a post I need to write, but have been avoiding. It's not about Jackson. It's about my friend Amberlyn. In August, she found out she was experiencing rejection in the lungs she got in October of 2009. The doctors did everything they could to try to stop it, but were ultimately unsuccessful, and Amberlyn passed away on November 18, at the age of 22.

She wasn't my very best friend or confidant. We didn't talk every day, and had only met in person once. But she was so dear to my heart. She was the first adult CFer I came to know after Jackson was diagnosed, and not only a great source of hope and inspiration to me, but an outstanding person regardless of her medical background. In spite of all the time she spent in the hospital, she always had a dozen side projects going. She was the head of her own non-profit organization, Amber's Angels. She spearheaded projects to bring comfort and joy to children and families living in hospitals, especially during the holidays. She put together a concert series to bring music to kids who were missing out on their own summer nights, and made Christmas care packages for the ones who couldn't open gifts at home on holiday mornings. Even as she was unable to talk at the end of her days, she begged her mother to continue and not let these kids go without just because she was sick. She also was an avid supporter of the military, and families struggling with a deployed loved one. She held jobs outside the home and usually had two or three other side projects running at any given time. She refused to stop living, so when I found out that she had died, I was shocked.

I had noticed that I hadn't heard anything from her in a while, and had known that she had been back in the hospital quite a bit, and made a mental note to see how she was doing. In the business of moving my house and celebrating my best friends marriage, I didn't follow up as soon as I would have liked. Last week I got home to our old place for the last time after spending the day moving and painting our new place, and logged on to the computer to find a note from her mom that she was gone.

When she was first diagnosed with rejection, it dawned on me for the first time that I would outlive many of my adult friends with CF. There is a select group of incredible people around my own age who carry the same disease that my son does, whom I consider to be my extended family. They are undeniably strong, confident, persevering, and understanding without letting me indulge in self pity. They show me in word and deed the kind of promise my son can realize, and de-stigmatize life with CF. They make me a better parent to Jackson, and I would be lost without them. At the time I began to have this realization, I believed that the death any of these friends would make me less able to cope with Jackson's disease. It seemed like it would be driving home the potential for tragedy in my own life. But when it came down to actually losing someone I loved, it was just that. Amberlyn's death is not just some reminder to me that Cystic Fibrosis exists, and is an ugly disease. It is simply the loss of someone who had a great impact on my life and my outlook. It was about HER, not about me or my sadness. The grief seems oddly unrelated to how we came to know one another. Strange as it may sound, I am thankful for that. I am thankful that she was not just someone I clung to as an example of life being ok as my own child got older, but a person separate yet undeniably entwined with the genetic defect that introduced us.

I still have a very hard time believing I won't be able to talk to her again. That she will never tell me how much she adores Jackson and how she is keeping up with all that we do. I won't have the opportunity to visit her, and she and Jackson won't know each other as he grows up. I haven't accepted that, although I am trying.I looked for the pictures we took together when we went to visit her at Dell Children's in Austin, and I can't find them. I'm sick and sad that the brief moment we captured is also gone forever. I think every day of her mother, her family and friends, and the hole her absence leaves in their lives. I won't forget in time what she meant to me or to others. I will continue to support her organization and strive in my own life to remember to do what I can for others.

Saturday, November 5, 2011

Direction

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I haven't been forgetting to post, I swear. And yes, I expect you to believe me again when I tell you how crazy life has been.

Since I last sat here to write to you, life has swirled around us like the tornado around Dorothy in the Wizard of Oz. Some new things have come into our life on the swirling winds, and others have slipped away.

We have survived the first month of respiratory season, weathering a couple of ear infections, a respiratory infection, and a respiratory virus. Lots of antibiotics and extra treatments, but Jacks played Iron Man through it all and defied IVs and Hospitalization. He's steadily growing, and even- dare I say?- looking a bit chunky these days. Other than the hours of the day we spend doing treatments, and the little valve poking through his shirt, nobody would ever know he was anything but a wild, happy, silly toddler. He has made it a year since his last respiratory hospital stay (I'm not counting the short stay for his G Tube!)

My last several posts seem to have been dealing with my finally coming to terms with Jackson having Cystic Fibrosis. (As much as one ever can.) Since his diagnosis there have been many ups and downs, and now, for the moment at least, life seems to have normalized. SO much of what I have shared here has been sorting through my own grief and hope. Now that the intensity of that grieving seems to have settled some, I sometimes wonder what to write about. It's a blessing that every moment and every though isn't wrought with the disease, but I don't want to leave this space. I'm thinking of mixing in more 'article' type posts, sharing how we cope with and strategize some of the different aspects of integrating our CF life. That way I Have something to offer during the time when CF isn't dominating our day to day (which is a good thing!) Is there anything you're curious about, or would like to see covered? I don't mind sharing things, so if there's something you wonder about, ask me, I'll gladly write about it.

In the coming week we will be celebrating the marriage of my best friend, and closing on our new house. Then a couple of days work on the house and then taking up residence there. It's going to be busy. I know, you're shocked. Hopefully I will catch up here before the dust settles.

Sunday, October 9, 2011

Side Effects

I've been talking recently about how I/we are starting to feel sort of like the most acute mourning phase of Jackson having a CF diagnosis seems to be behind us. It's definitely refreshing to feel that way, but I'm also beginning to see how areas of our lives we never expected to be affected have kind of died of neglect while we were busy regrouping.

When you have a baby- any baby, your social life changes drastically. Having had a child already, we thought we were pretty prepared for that aspect of things. But the CF diagnosis came into play there in big ways, too. When we told our friends that our new baby had been diagnosed with a life threatening condition, we couldn't imagine the outpouring of love and emotion that would follow. And we also couldn't imagine that some of the people who ached with us so deeply on those dark days might fade so quickly from our lives. Maintaining friendships since then has been HARD. I don't want J's CF to be the only thing I ever talk about to my friends. I don't want to be the person nobody wants to hang out with because it's aways about me or my issues. I still get uncomfortable at parties when people ask how J is doing in an overly empathetic way. I also don't know whether that makes me a jerk for spurning the genuine good wishes of a friend or someone who just doesn't care for pity. Maybe I'm both.

I started seeing a therapist so that my interactions with friends wouldn't always end up with me gushing out all the things I never get to talk to other adults about because I'm always at home with the kids. I highly recommend anyone and everyone who can get some therapy to do it, for just that reason. When talking to friends and loved ones about our struggles, we tend to alter our feelings to avoid stressing them out or eliciting judgement. When you have a therapist, you can REALLY let go of some of the bottled up things & be more free to enjoy the life you have at the moment. That's my PSA for the day.

Back to my point. Maintaining friendships as adults with small children is hard enough. Throw in some acute grief , financial hardship, repeatedly cancelled plans and changed viewpoints, and voila! Alienation. I have to say, almost all of my friendships have changed drastically since March 2010. I also don't think it's ever a bad thing to really know who your friends are. But as with anything, it has never ceased to surprise me who comes through that I would never expect, and who's not there that I thought always would be. People we would have considered acquaintances have gone above & beyond. And of course, we have lost touch with people we really hoped to stay close with. The tough part is never knowing if the alienation was reciprocal, or just in my head. I feel like I've been under a rock for a long time and it has made me AWKWARD in so many new ways. I don't know how or why some part of me thought that we would come out of this (much as one can) the same people we went in. Life is strange, and never ceases to surprise me.

Having said that, I generally LIKE who I am these days. I can totally understand if some of the changes in me catch old friends off guard. I'm...softer, I guess. Not quite as determined to be tough all the time, hopefully kinder, and much less destructive. That's honesty for you, folks. But I'm not the same, my husband is not the same, Emily is not the same. Partially because we have simply grown and changed and partially because our growth and change has been deeply impacted by this aspect of our lives. Deep sigh. It is what it is, right? It's just a part of life, and learning about ourselves- which surprisingly- is an unending process.


As for the day to day...I won't say that things are getting crazier still, but I won't say that they're not! This time of year is wild. Jackson isn't improving quite as much as he should with his antibiotics, so tomorrow we'll most likely add some steroids to the mix and try to kick this junk out. As for now, it appears I have to go because the keyboard is no match for the cuddle war a small person is trying to wage with me.

Wednesday, October 5, 2011

October, What Can I Say?

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It's October. It's generally my favorite month of the year- a touch of crisp fall air finally infiltrates the stagnant Texas heat. Halloween... need I say more? The holiday season kicks off, promises of gathering family and friends, drinks and smiles, excitement, travel plans, twinkling lights, all of the things about the dark days of winter that I love start to roll themselves neatly into the shorter days and cold nights.

My last couple of Octobers have kind of sucked. Two years ago, Em came down with swine flu, and the virus sadly put the kibosh on a surprise birthday party my lovely husband and friends had planned for me. Last year, the same when Jackson had to be admitted to the hospital for IVs. We have a lot going for us right now, and I guess I'm feeling like the other shoe may drop at any time.

So on the bright side (my favorite side), we have a lot going for us! We are in the middle of buying a house (and what a process that is), Mike is working with a local Fire Department (yay!), and it has now officially been a year since Jackson was hospitalized! We have a lot to celebrate and be thankful for, and a whole lot to get done. I am trying to start the packing (and purging of crap I don't want to move with us) although we've yet to set a closing date.

In addition to trying to keep my head amidst the madness, I'm trying not to get superstitious. Jacks came down with what seemed to be some obvious allergies at the time, but they turned into respiratory CRAP, and he's now on day 3 of a course of Bactrim. And really folks, I know being in the hospital a year ago this month has no impact on what will become of this situation, I know that's ridiculous, but still, for the sake of honesty, I have to admit it has me a bit twitchy. I'm not even afraid of a hospital stay, per se. Granted they are inconvenient as all get out, they split up our family, are painful for Jackson, and burn our candles ...wherever they can burn when both ends are already lit- but they do what they need to do. They get Jackson back to his best state of health, and that's a good thing. And oh yeah- did I mention this is all pretty superfluous because he's only on day 3 of his antibiotics and will probably be fine?


Separately, does anyone else have a hard time being bubbly about their own good fortune when others around them are suffering hardships? I've had some friends get terrible news lately. I know they would want me to be happy for the things that are good for us, but I feel ...I don't know...guilty? In case I haven't mentioned it yet, feelings are frequently stupid. I have a hard time with gray area. I want everyone to be happy. I'm either happy or sad, I don't really have middle ground, or rather, this is how clumsily I navigate it.

This is probably one of my most poorly written blogs in terms of having any sort of cohesive statement or story, huh? I'm going to publish it anyway though, because that's kind of how my head feels. It's chaos in there, kids! I wanted to write to update on things- The House- our impossible dream, is materializing before our eyes- or at least in email and contract form at this point. My physical health is good & I'll be seeing less of my own doctors for a while, which is fine by me. The kids are doing great, save for J's current snot festival. But yes, things are also crazier than usual. How many more times can I say that line and not lose you? It's true, I swear it. And I don't really expect it to slow down before the end of the year, at least. It's going so fast. Jackson will be two in the blink of an eye. I'm getting ahead of myself.

Everything happens ONE MOMENT AT A TIME. Slow it down.

Wednesday, September 21, 2011

Living, Part 2

I spend a lot of time inside my head trying to figure out how to explain how certain things are related. A seemingly random telephone call, major life changes, my melancholy over Jackson graduating to 'the vest' for airway clearance. They FEEL related. Admittedly, I am one of those 'all is one' types anyway, but sometimes the connections of seemingly unrelated events is stronger than others.

Because I just talked with someone about 'my writing', I feel awkward and on the spot to come up with something extra special, but I'm going to try to keep it to the point instead.

It's bittersweet to see Jackson take another step toward independence. CF puts things in a microcosm, life, death, the poignance of a given moment, it's all just magnified. Each step he takes toward being older is a form of liberation and a form of loss, as is every choice we make, every day. The baby part of his life is ending. He gets older. He needs me less, he makes progress, CF makes progress, hopefully medicine makes progress. All things must change.

It's occurred to me recently that my waves of grief may have somewhat stabilized. Or at least I have begun to grasp that it is a part of me now, as mush as my fingers and toes. I have begun to feel a bit like a functioning human on a regular basis, and slowly wondering, what now?

When we applied for our home loan recently, I was upset when my credit rating came back not bad, but non-existent. Since I carry no credit debt and haven't worked in almost two years, only one credit bureau even knows I'm around. For a moment it was frightening. Like I had really ceased to exist since retreating to the confines of this house to lick my family's wounds. It bothered me more than I could understand. Not that I'm hot for Transunion & Equifax, but I had the strong urge to not be invisible.

I've been laying groundwork toward my own goals, writing a business plan and working towards enrolling J in a part time program where he can socialize with other kids.

Out of the fog, there is assembling the vague idea that I still have an identity of my own. That life is indeed still happening. That I have disappeared for a time to nurture and to mourn, and to fortify my children to the best of my ability, and with all of my love. And I still will, but if I expect them to learn, and grow, and live outside their comfort zones, I damn sure better be willing to lead by example.

You might be annoyed if you got a call at 4:37am. Not me. I got a reminder that even though I have forgotten myself, I haven't been forgotten. I'm still here, somewhere. Another part of my last lesson that sometimes life with CF isn't just 'living with a disease', it's just living, and THAT is what I want to teach as a mother.

Sunday, September 18, 2011

Life With CF Isn't Always Just About CF

2011-09-09 13.34.45 In my last post I alluded to a few of the MANY things keeping us busy these days. Usually, I try to keep my posts here on topic, because this blog is about our life with CF, not what I think about foreign policy or Russian pre-existentialism. So on occasion there is some internal debate about whether certain topics are relevant enough to warrant a post. I tried to write a post earlier today about how CF relates to some of our current madness, and was frustrated with how long it was taking to explain how the two were intertwined. After a dozen paragraphs and a decision NOT to subject my readers to that, it came down to something very simple.

Life with CF isn't always just about CF. Sometimes, it's just life.

After 18 months of stumbling around trying to figure out how to cope with it, this simple realization seemed HUGE. Of course, I still struggle, and probably always will. It's hard to watch your child be dealt this hand. But I'm also kind of proud that we're not just saying we want him to live as normal a life as possible, we're actually doing it. We are addressing my health 'quirks', butting heads with our 'tween', pursuing our prospective career goals, and.....trying to buy a house. Which also means I am madly trying to rid our current home of clutter and junk that I don't want to deal with should we be successful. Somehow there is space for all these things between CF diets and tube feedings and breathing treatments and pills and vitamins and all the things I thought would consume every minute of forever. And yet it is still inextricably intertwined with every aspect of every day in ways that still sometimes surprise me. Don't get me wrong, so far I'm failing miserably at streamlining all the 'stuff', but it's no small miracle that I'm even trying.

Today amidst taking away all of my daughter's toys and discovering that Jackson had once again 'washed' his hair with his formula, the cat pooped beside the litter box, and I didn't accomplish ANY of my cleaning goals for the day, I managed to learn that. Sometimes, it's just life.

Wednesday, September 14, 2011

Another Long Absence

I guess you can count this one under the "no news is good news" category. 2011-09-04 11.48.59

Jackson turned 18 months old this weekend, and is doing beautifully! He had a little virus/ear infection, but recovered well and quickly gained back the weight he lost while sick. We are gearing up for respiratory season, and J has been fitted for his own vest. The vest will take the place of us thumping on his back, chest, and sides, and uses a compressor to do the 'thumping' for us. It makes him seem so grown up...-insert all cliches about how quickly the time goes here.

Just like I say in every post...I hope/intend/plan to/think about posting more often. And as always, I can barely keep up with the day to day, and in all honesty, I can't guarantee an increase in frequency. You, my reader, could technically count that as a win. Less to blog about = more normal life occurrences, and less CF struggle, right?

And to be perfectly honest, I've had a lot going on with me lately. I've had a few small medical quandaries myself- I wouldn't feel OK going on about them here, this blog is about life with CF, not a place for me to enumerate my minor issues. But it has been consuming my time recently and it is something I and other caregivers should heed. It's easy to put your own business on the back burner when you care for someone with a chronic disease. But if you want my advice (you're here, so you're getting it!), don't. When you spend so much of your time and energy taking care of someone else, it's all the more important that you are well yourself.

So that's what I've been doing. Well......there's more, but I'm being insanely superstitious about it, so you're all going to have to wait! Let the wild speculations commence...

I'll post when Jackson gets his vest and maybe even a video to show you all how it works. In the meantime, thanks for sticking around in spite of my lack of reliability. I love ya for it.

Friday, August 19, 2011

Vacation & the Return to Reality

2011-08-14 16.39.20Last week we hit a huge milestone- our first real family vacation. Of course, we have traveled together before, and we LOVE our trips to visit family, but this was our first time to go somewhere we knew nobody and be camera wielding tourists. I had been hanging my hat on this trip and worried something would happen to stop it for MONTHS. Nothing did. We made it! We escaped the daily grind, the hundred hour work weeks, custody schedules, bills, foundation problems, Doctor visits, meetings, plans, pains, stresses and conundrums and we went to the beach.

It was phenomenal. South Padre Island isn't like any other part of the Gulf Coast that I've seen. The water is the delicious aqua hue of a perfect piece of sea glass, and crystalline as it washes over your feet. The mist in the mornings is so thick you can taste the salt as you breathe it in. The sand glitters in the sun. I'm not romanticizing it, it was that good. I ran on the beach in the mornings (beach running is hard!), we built sand castles- J destroyed sand castles. Emily boogie boarded. We played in the waves. We chased tiny fish that skipped through the outgoing tides. We ate seafood. We visited the Sea Turtle Rescue Center, The UT Pan American Coastal Studies Center, took a dolphin watch cruise and got to handle sea slugs, rays, starfish, and more. We hunted shells and identified wildlife from birds to plants to crabs. Em and Mike had a fishing trip for the ages. And we were only there 3 days. 2011-08-15 11.23.49

Coming home was hard, for a variety of reasons. I had wished so hard for this carefree moment for my family. I had clung to the idea of escape and used it to get through tough times, and wasn't quite sure what to do when it was all over. And I LOVE the ocean. If I didn't have a binding custody agreement I would have moved my family to a coast long ago. It's hard to leave.

And even though we traveled with three extra bags just to handle our medical needs, it was a little vacation from CF, too. The night before we were to leave, CF made it's nasty self known. Not with Jackson, but in the form of hard news for a dear friend. Amberlyn has been my friend since just after Jackson's diagnosis. She was the first adult CFer I met online, and we keep in touch as much as we can. She's the kind of person I really want my kids to have as a role model. Instead of feeling sorry for the cards she's been dealt, she spends her time making the lives of others better in their own struggles. And I'll be damned if she doesn't just love J to pieces. In October of 2009, Amberlyn got a new pair of lungs and a second chance. Last week, she found out that she's battling rejection in those lungs. Her body recognizes that the transplanted organ is foreign, and it attacking as if they were the enemy. Her medical team is inundating her body with some heavy duty drugs to try to stop the progression. I've been thinking of her non-stop since I heard. Of her family and friends and loved ones, and her donor's family.
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Logically, I know that what's 'fair' in reality means nothing. There should be a cap on the amount of pain and bullshit one person has to deal with, but there's not. And I can't imagine what that's like first hand, but watching it happen to your loved ones sucks. It makes me feel so angry and helpless. It also reminds me not to be wasteful with what I have. I don't have a neat little way to tie my subjects together today. There's bitter and there's sweet. There's reality, and escape. It is what it is, and I'll keep doing my best to make the best of what I have and hoping against hope that the people I love can continue to do the same.

Friday, August 5, 2011

Consistency, Dependability, Routine

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There is so very little in my life that is consistent or reliable. A great part of that is because I am inconsistent by nature, and the remainder because the winds of change blow hard. No pun intended, life has simply been filled with change, both drastic and inconsequential. During the summer, especially- there is no rhyme or reason to the ebb and flow of events. Emily comes and goes, Mike works and works and sometimes comes home for a night or a day, or maybe two. There is no nine to five for us, no traditional weeks and weekends, often even night and day aren't separate entities. Sometimes I cook, sometimes we eat out, nothing is planned. While I enjoy my little gypsy brain, changeable as the summer breeze, I sometimes get lost inside it.

My life has made a similar pattern, starting journeys that rarely, if ever end where or how I thought they would. I try to take from them nonetheless, to learn about myself and learn how to play to my strengths (adaptability!), and improve or atone for my weaknesses. There's not a hell of a lot of comfort in it. I wouldn't mind knowing what it feels like to at least think you know what's coming next.

Lately I've been struck by the 8 O'clock hour. Whether Emily is home or at her Dad's, whether Mike is at work or at home, whether the bank account is full or in the red, if it's January or June, at home or on the road, I am in the same place at 8 O'clock.

At 8 O'clock, I am in a chair, usually rocking, always to the steady buzz of the nebulizer. Minor changes to the routine happen, add meds, increase calorie content of feedings, what have you. But mostly it goes like this:

Out of the bath and into the big fluffy towel. Clean the G tube stoma, play the 'wanna wanna' hair drying game, fresh diaper and jammies. Give pacifier & wrap up in blanket, get rewarded with the sleepy sound and a curly little head nuzzling into my neck. Sit down in the chair. Any chair, any place, but usually the big blue Lazy Boy that once belonged to a friend's father, but now lives in the corner of the undersea room. The one he loves to climb if you look away for even a second. His arm goes under my arm and around my back and he holds on to my shirt. I lean over and touch foreheads, bump noses, before picking up the spoon pre-filled with apple sauce. Inside the applesauce is a Prevacid Solutab, soft and partially dissolved- on top are three Pancreaze. The spoon goes in, even if he's fought mercilessly against his enzymes all day. He giggles as I hook up the extension set, fidgets with the feeding tube with his toes, and I feel a tiny twinge in my arm from holding up the bolus at the very end. The belly feels full, and the eyes get heavy, and inevitably, he scooches down and deepens the cuddle on his way to dreams. Albuterol and Pulmicort, followed by Pulmozyme. Fidgets, smiles, and forehead kisses. Sometimes quiet looks or one last protest against slumber. Always salty forehead kisses. Always a moment of hesitation as I tuck him in, always, always, the resonant grace in my heart as I see him sleeping.

I wouldn't choose the dependable, comforting moments of my life to be linked to CF, in itself unpredictable and destructive. I also wouldn't choose to often only have one of my children to tuck in. But every single night since Homozygous Delta F508 made it's presence known, I have held my son in the same way. The night routine elicits a Pavlovian response for the whole family. It's the benchmark of the end of the day, the signal that we've done all we will do in this turn of the sun. It's a small but powerful guarantee of contact and bonding with someone I love so very much. No matter what has failed me or hurt me during the day, there is, in that moment, an intense reciprocity of love.

I wonder how long I have that moment for. Eventually, he will outgrow being rocked by his mama. Eventually he will hold his own nebs, take his own pills, have a percussive vest that thumps his chest instead of my hands. Maybe eventually he'll take a pill that renders all those other treatments unnecessary. There is also the possibility that things would go another way, but we don't entertain that notion. He will grow, as children are wont to do, as mothers we want them to.

I don't usually feel the desire to stop the clock. I embrace each year on my driver's license, I believe wrinkles trump Botox every time, and I know that every moment survived in spite of our folly is a triumph of its own. The beauty of the moment is not only in its sweetness, but also in its fleeting nature. Take all you can from it, because it will be gone just as swiftly and as sure as it came.

Like so many other things, it's a little microcosm of life on the whole. I try to do better, to be better, I am often pleased, and often disappointed. And while I won't stop trying to be better than I am, in those few moments, it ceases to matter.

Monday, July 25, 2011

2011-06-30 17.20.48It's been a month since my last post. It feels so much longer than that. With a few, very small- exceptions, J has been fabulous. He did experience an intestinal blockage that sent us to the ER, and we have had a few small digestive challenges, but overall he is just incredible. He has gained over 2 pounds and grown 3 1/2 inches sine his surgery. His height is now back up near the 90th percentile, and weight has crept up to almost the 25th percentile. He looks so much healthier that it makes my heart sing every time we do a tube feed. It's like his body was bound up tightly just waiting to grow, and the G Button freed him. We did switch from overnight continuous feeds to part time drip/ part time bolus after two incidences of his tubing becoming wrapped around his neck. His lungs have fared well in the summer heat, and other than a few precautions to prevent dehydration (salted Vitamin Water is his new favorite), the summer has been pretty easy, health wise.

Somehow, I expected that a period of good health like this would make things easier. I'm certainly grateful for less is more on the medical side of things. We have definitely done all we can to enjoy the relative peace from CF troubles. Swimming, playing, finger-painting, running, and exploring have fit themselves nicely between nebulizers, CPT, pills, & feeds. Life seems downright normal sometimes.

But there have still been a few aspects of this' downtime' from CF in which it has made life difficult. My husband has been facing some issues with delayed grief over Jackson's diagnosis. I'm willing to bet it's not uncommon for the person who isn't the primary caregiver to repress the pain and escape into work or other activities. If he's up to it, I'll invite him to write a guest blog on the topic.

Another challenge that has been, at best- a mixed blessing, is the matter of health insurance. After struggling to get Jackson (and the rest of us) insurance for over a year, we are off and running. But the 'running' part should probably be followed by 'out of money'. It's hard for me to articulate my feelings on this point without sounding ungrateful. We are incredibly fortunate to have financial help from family that will enable us to meet the premiums, co-pays, deductibles. and out of pockets. I won't have to lay awake at night wondering how I'm going to pay for medications. I am deeply, genuinely, and intensely grateful for that. But it makes me so angry that we can't do it on our own (yet). I don't feel entitled, but I do feel there should be a cap on how much of yourself you have to give up in order to achieve some things. My husband has freaked out and started working 90 + hours a week because he WANTS to do right for our family. We are lucky to see him for an hour at a time right now, and while I'm proud of him for his willingness to do anything, it's hard to keep the home fires burning sometimes. I'm stuck in limbo, desperately wanting to contribute, and incidentally desperately limited on options- trying to find a way outside the box financially. We want to be independent. We want to be able to provide for our children.

This is hard for me. I once raised my daughter on $8 an hour, all by myself. There were more than a couple times I fed her with money I found in the seats of the car, or couch cushion change. The Dollar Tree and the Dollar Menu were often our saving grace. And it feels like hitting a brick wall that somehow now the two of us can't manage this by ourselves. I hate feeling incapable.

I try my best to just be worthy of the help I get, and to help others whenever given the chance. I'm not sure what else I can do but hold the hope that I am indeed, fostering some good karma.

Hopefully I'm back to blogging regularly now. Being a stream of consciousness talker sometimes leaves me feeling overexposed, but also means I never go too long without word.
2011-06-29 15.51.07

Monday, June 20, 2011

Cooling Our Heels

Sorry for the lapse in posting. Jackson is doing very, very well right now. He had a bowel obstruction that landed him in the ER a couple of weeks post op, but didn't even end up being admitted, and has been thriving like a little weed since.

It's summer, my kids are home with me, and we are spending our days making popsicles from fresh fruit and cream, blowing bubbles filled with laughter, running through sprinklers and snuggling up for family siestas during the heat of the day.

In other words, if you overlook the tubes and the machines and the shelves and cabinets full of meds, and the diligent hours still spent on treatments, we are ignoring CF. We are stealing every moment we can and living our happy summer with as much disregard for it as we responsibly can. We have been granted a fleeting respite from the chronic knots of worry that live in the pits of our bellies, and not a moment too soon.

I need a break.

We have been going hard and fast for a while, and I'm at my limit.

I love our life, and this blog, and the fact that so many people care so much how J and the rest of us are, and are there for us when we are in pain or in fear, and just as much so when we feel joy and celebration. But for this brief and passing time, I'm just going to step away from the keyboard and live.

Tuesday, May 31, 2011

The Party Never Stops - Part 3- Great Strides!

J's recovery was going well enough that last Sunday, we decided to try taking him out for our Great Strides walk.  We decided that if he seemed at all uncomfortable or unhappy we would go home and knew everyone would understand.  

I had been so disappointed that many members of our team had cancelled on me, but was excited to see a lot of surprise supporters when we arrived at the walk site.  Jackson enjoyed the pinwheels his Grandpa brought and spent the whole time watching them spin in the wind with a goofy smile on his face.  

It was time for pain meds when we reached the finish line, so we didn't stay for the after-party or to hear the grand totals for our walk.  I found out tonight that the Ft Worth Chapter raised $305,000 this year!  Our national team has raised close to $7,000 so far this year, and will keep working to bring more funding to the CFF for research and patient programs.  When I talk about the programs, it's not just part of the fundraising spiel.  It's personal.  Jackson takes special vitamins that we couldn't get covered under Medicaid because they were considered a supplement rather than a prescribed drug.  Because of these 'patient programs' I'm always talking about he was able to get them.  THe same goes for his high calorie (and high dollar) formula. There are more programs to fund and more that I would like to see grow and be fruitful -(ahem, we should all have a vested interest in more adult care since we are working so hard to extend the lives of our CFers!)  So yes, when I give my speech about why I spend so much time and energy fundraising, it's not just because I don't have a day job.  



In other news, Jackson's first clinic appointment post-G Button surgery is on Friday.  I don't expect to see any huge gains in this short two weeks, especially with all of the quirks of recovery, but I think we will see something.  He looks different somehow already.  His color is better overall, his cheeks flush pink again.  It's impossible to tell if his moodiness before the surgery was just toddler changes or if he was feeling cranky because he was becoming malnourished- but he's his very bubbly, happy, silly self again. (with just a hint of familial opinionation).  

The steri-strips came off of his incision site and as I looked at and touched the fresh scar beneath, I silently bargained with fate.  "Make this worth it."  And now I'm holding my breath for some confirmation that all of this increased energy and vitality isn't in my head.  

And to answer the question at least half of everyone is just too polite to ask: No, I don't wish we had "just gone ahead and done it sooner."  Even if were a downright miraculous solution to the ever-present weight struggle, I do NOT wish we had done it sooner.  I know that I did everything I knew to do and then some and was out of options before I made a decision to permanently (& painfully) alter my child's body.  I'm as ok with it as anyone could be.  

Saturday, May 28, 2011

The Party Never Stops - Part 2- Recovery

The thing that made me the most anxious about Jackson's surgery was the recovery. I worried about the amount of pain he would be in and how it would be managed. I wondered how long it would take him to be comfortably mobile again, whether the pain meds would make him feel nauseous or affect his appetite, whether it would hurt his little belly to eat too much, etc, etc, etc. 2011-05-21 09.07.56

It was easy to manage his pain and movement in the hospital. Between the morphine and innate self protection, he was very still and cautious. I didn't even pick him up until the next day because I figured if he was comfortable, I didn't want to risk hurting him. The morning following surgery he was less than thrilled about getting his breathing treatments, so I decided to hold him like I do at home to see if that would help. Mike gingerly lifted him from the bed and handed him to me and he easily took his treatments. After we had finished and placed him carefully back in his bed, I was shocked to see him clumsily hauling himself up to sitting in his little codeine haze.

By the time we got home that night, he was insisting on standing up and walking again. By Monday morning we had transitioned to plain baby Tylenol (no codeine) and he was crawling on his belly to retrieve toys under his bed.

Each day the site is a little less tender, and after only a week I can freely change the dressing, clean the site, and turn the button (to prevent adhesions during the healing process) without having to restrain little arms and legs from protesting. In another week, he will have his first post-op weigh in, and will be able to take a regular bath again. The latter excites me very much- trying to keep a toddler reasonably clean via sponge bath is a world of challenges in and of itself.


It astounds me how adaptable we are, how quickly our minds and bodies can adjust to extreme changes in such little time. This time last week I was nervously trying to secure carseat restraints over a fresh wound with shaking hands. Since that day I have mastered enteral feeding pumps, the art of checking all components every two hours all night long, the subsequent art of 3am sheet and jammy changes when leaks happen, how to take cover from tornadoes with a child attached to a tube (takes some creativity) and begun to segue into yet another 'new normal'. Jackson has gone from a rambunctious toddler, to a very sore surgical patient, and back to a rambunctious toddler who sometimes pokes at the little nub beneath his onesie.

The experience is no longer looming over us like a black cloud, and there is great relief in that. We weren't able to avoid it, and there are still a few melancholy tears for that. But the time has come, as it always does, to move on. And so now we try to enjoy each moment between the last time we held our breath and the next, both getting and giving all we've got.


Next:
Great Strides 2012!

The Party Never Stops- Part 1- Surgery Day

What a week! So much has happened I have to break it down into parts.  I'll start with the day Jackson went in for surgery.2011-05-20 12.38.45

  Friday morning we shuttled Em off to school, threw a few things in our bag, and headed for Cooks.  We signed in and headed up to the surgical waiting room, then to the pre-op room for paperwork and a last minute once-over of the kidlet to make sure he was ready to go under the knife.

We also got to ask all of our questions, and talk to the anesthesiologist.  I was significantly less than thrilled to learn I wouldn't be able to be with Jacks until he was sedated.  They did say they could give him a little bit of inhaled Versed if I thought he would be scared to leave me.  To be honest, he's never shown any stranger anxiety, but he's also never been wheeled away from Mom on a stretcher by strange people in masks.  So for his comfort and my sanity, we chose to have a little pre-sedation chill-out meds.  

When it was time for him to go, we went to a room called "Induction".  ONly one parent was allowed, and I may owe my husband an apology for not even being willing to offer for him to go.  But he seemed to know this was something I needed to do and nodded for me to go.  The room was small, bustling with about 6 other patients, bustling with activity, yet deceptively quiet.  Because CF patients face additional respiratory challenges when undergoing anesthesia, Jackson got an extra breathing treatment while his nasal spray Versed kicked in.  He didn't suddenly get sleepy or limp, but he stayed very calm when his treatment was over.  He has his blanket and his buddy Danger Monkey with him.   


My heart raced when the OR nurse wheeled his little crib-sized gurney in to take him away. The surgeon came to touch base with me, as I watched him my baby wheel away a wave a panic threatened to break.  But as I saw him look up at his nurse and scrunch his nose and shoulders in his favorite flirtatious pose, it swept past, I thanked the surgeon, and went to fill in the anxious family and friends waiting for word.  

The surgery itself takes only about fifteen minutes, a total of close to 45 for sedation and prep.  My husband, brother in law, mother in law and I all sat in the waiting room wondering what people in these rooms did before wifi and cell phone apps.  I recognized several other parents from the induction room and felt a little boost of solidarity as we waited for word on our children.  There was one family that stood out- the ones with no bags, no gadgets, but carrying pained looks and heavy tears.  They weren't here because they planned to be, and I quietly counted my blessings.

After about an hour we were called back to a consultation room and met briefly with our surgeon, who informed us everything had been textbook, as expected, and Jackson would be able to take food by mouth by dinner time, and we would start using the button for overnight feeds by 8 pm.  

It took another hour for us to be called back into the Post Anesthesia Care Unit (PACU). I worried that he was having trouble waking up or having complications. We learned later that they had given him a breathing treatment and CPT and gotten some post-anesthesia mucus out of his lungs, which is very good.  When I saw him he was 'awake', very still and quiet, and with a glassy look in his eye that told me he was feeling no pain.  He had been given morphine for the pain and was comfortable.   Because it's the kind of person I am, I gingerly lifted the sheets and took a look at the button and incision beneath his tiny hospital gown.  I was surprised by how neat and clean the site was.  


Because the day was a wildly busy one at the hospital, it took a few hours to get to our room.  It was also a little strange (even though we have only had one other stay here so far) to be somewhere other than the CF floor.  The nurses weren't familiar with our routines and some of our medications, but to their credit, they went out of their way to ask us to make sure everything was right. This is why I love our hospital and care team!

Sure enough, by dinner time Jacks was ready to eat, in spite of the heavy duty pain meds keeping him comfortable, if sedated.  When Mike brought up a container of fries from the cafeteria, his little hands started to shake as he reached for them.  He devoured half the serving with no nausea or complications and was much happier with a little food in his belly.  Two hours later the nurse showed me how to prep the pump and set up the feeding, and then it was time.  I was intimidated at the idea of grasping the button firmly on either side to steady it, and wondered if I would be able to insert the extension set with the necessary pressure.  Mommy instincts say to be extra gentle with the little guy who's been poked and opened up, but smart mom also knows not to pussyfoot about and make it take longer and be more painful than necessary.  With the right attitude and a good teacher, it was much easier than I thought, and Jackson's first tube feeding was underway.  

Night meds were administered, J fell asleep, and Mike and I made up the sofa-bed we were so familiar with and gladly greeted the end of our very, very long day.

Wednesday, May 18, 2011

T- 36 Hours, and Counting

We met with our surgeon today, and all systems are go. I was quite pleased with his manner of being very informative and still treating us like we were capable of making the right decisions for our son. After a brief rundown of the different ways to perform the procedure and the different types of buttons, we made our decision.

We have opted to go for a traditional incision placement rather than a scope, due to the type of button used and a healing process optimum for our VERY active little guy. The Mini-One Balloon button isn't available to us, but the one we opted for is a lower profile model that is very similar, only it has a rounded plastic anchor rather than a water filled balloon to hold it in place. It is a bit more challenging to insert should it break or become dislodged, but we will be able to move to a Mic-Key or a Mini after the stoma heals in a couple of months.

Surgery is scheduled for Friday, most likely in the morning. Tomorrow the hospital will call with pre-op instructions, such as when to arrive and how long before we come in he should abstain from eating and drinking. If all goes well - and we have every reason to think it will- we will check in on Friday and out on Saturday. Things will be significantly easier without the addition of the Nissen surgery.

I thought I had worked through all of my emotions about this, but was hit with a little wave of unexpected sadness when we left the office today. In spite of all the reasons to do it, and the fact that we are ready to move forward for J's sake and our whole family's- it's still there.

I began to think about how sad it is when your baby goes under anesthesia and you have to leave them alone. I remembered how he cried when he saw me after coming out of his Fentanyl haze after his Bronch. I remembered the woman in the waiting room with us that day who sobbed uncontrollably the whole time we were sitting there and how I couldn't even imagine what her child was there for. I thought of the dozens upon dozens of needle sticks and how impossible it is to get an IV in J and how much he hates being held down. I thought of my dear friend whose daughter recently had her tube placed and how she says it pains her to have it tended to as it heals. I wondered sincerely how we will keep this thing from becoming a tangled, hazardous mess when he roly-polys around in his bed all night. I also thought of how he has now not gained weight for half of his lifetime. I remembered, most of all, that this is what CF is. A constant reminder of pain and mortality in the face of a happy toddler. A fight that is ingrained in who we are but we cannot let wholly define us. A reason to embrace every single minute pleasure we can glean from each other. A horrible thing that has brought people into our lives that I don't want to imagine life without (yes, you!).

And so for a moment, I finally let all of these things wash over me, and decided to share them. Ultimately, this is not about me. But as mama, I must make the call. And I am ready. And I am so grateful to live in a time and a place where things like G-Buttons are available to improve our quality of life, and all the people I connect to are available at the click of a mouse (or touch screen).

Monday, May 16, 2011

Prepping for the G Tube

Last Friday we had our Upper GI Study (aka Barium Swalllow) to determine whether it would benefit Jackson to have an additional procedure during his surgery to correct reflux. The great news is, no reflux was observed, and he doesn't exhibit traditional signs of reflux so we all decided that it wouldn't be prudent at this time to perform an additional operation. 2011-05-15 17.27.01

This morning we met with our CF Clinic team to discuss moving forward with the surgery. Although we understand that there will be some trial and error in finding what works best for Jackson, we have established a tentative plan for his post-op feeding plan. He will eat normally (hopefully) during the day, and will be hooked up to a continuous drip feed while he sleeps. I can't say I'm not a little nervous about his roly-poly sleep habits, and I may be spending a few days with his bed next to mine to make sure he doesn't gator-roll his tubing. That's another one of those things we will have to figure out as we go.

Wednedsay afternoon we will meet our surgeon. He will determine the best way to place the tube, (PEG, Laparoscopic, or Traditional incision type surgery procedure). Then we will schedule the surgery- the sooner the better. There's no reason to wait, we might as well get on with the healing process and ahead of the learning curve. It's possible we could be in surgery before the week is out, which would be my preference. The hospital stay after the surgery, ideally, is only a couple of days. Jackson can be released to go home once we have demonstrated competence with the equipment and J is tolerating feeds.

I am doing all I can to document the procedures and plan to put together an informational documentary- or at the very least slideshow- of our experiences. I also want to go back and explain in more detail what everything means, why we may decide to go one route instead of another, but right now the volume of things happening is greater than the time allowed to relay the information.

Like all facets of CF life, this affects not only Jackson and us, but his older sister as well. She's a worrier and a nurturer by nature and was very concerned about her brother having to have surgery and something put in his body to help him grow. After seeing another CF mom who had a baby doll with a g-tube for her child, I wrote AMT, the company that makes the Mic-Key & the Mini-One G Buttons to see if they would send us one for A doll for Emily. They very quickly and kindly obliged, and we picked out a special doll to be the G-Tube Baby. Em has become much more at ease now that she can manipulate and explore the very same device her brother will have. I have to say, it was also comforting to me to get some hands on time operating one before it's firmly implanted in my child.

I'll do my very best to update as we go, and promise a full recap after the fact. Obviously this isn't a position we would choose to find ourselves in, but as with all the less than ideal situations that can come with CF, I have high hopes our experience may help someone finding themselves where we are. Until there's a cure, or a treatment that makes CF treatable rather than fatal, it's the best we can do.

2011-05-06 15.49.03 Here's to hoping we soon see less of exposed spines, scapulas, sternums, and ribs.

Tuesday, May 3, 2011

You Can't Always Get What You Want...

So maybe it's not the most original title. But cross my heart, I woke up with that song in my head this morning and it won't quite go away. It's a good song. It captures the feeling of bitter melancholy without stopping to wallow in it, and that's exactly what I need to do.IMG_9401

Our CHIP (State insurance) kicked in on May 1. I was waiting to post the celebratory "We survived a month with Cystic FIbrosis without health insurance!" post until the smoke had cleared, because frankly, I don't care to tempt fate these days. We celebrated our little success by visiting the pharmacy to re-stock and leaving a couple hundred dollars in their pockets in our wake.

Yesterday we went to the CF clinic for the first time since our hiatus. I was nervous and oddly, a little excited to see how we had fared on our own.

I knew that it was curtains for us the moment J hit the scale.

How did I not SEE a 1 1/2 pound weight loss? When you only clock in at about 20lbs to begin with...HOW? And although I'm glad the rest of the appointment progressed sort of slowly and gave me time to swallow the lump in my throat, I knew in that moment what the outcome would be. Jackson is getting a G Tube.

I'm pretty good at handling these things without letting my emotions get the best of me now. I know that appointment time is the time to ask questions, not to cry. And so I did. It's always funny to me how you can carry on a whole conversation & your head can be having it's own separate inner dialogue. Mine was "I'm going to be really upset about this once I call the family, run errands, make dinner & get the kids into bed."

Plans were made. I unfortunately had to call Mike at work to break the news to him, but I'm very proud of how he took it. All parents were called & informed. I really feel like I should wait for the news to circulate through the family before posting it here, but with the size of my family that could take half a decade.

I know this is the time to move forward. I know we have done everything humanly possible to avoid this, and I know that if we were to go on any longer without doing it I would feel irresponsible. In the past 7 months we have had only one good weigh in. Weight for length has gone from steady to dropped off the charts. He puts every competetetive eater to shame with his appetite, and yet he still can't meet his needs. It's time. I'm certainly not happy about it...but it's time.

Where do we go from here? First we have to schedule a barium swallow to assess his level of acid reflux. If it's bad enough, they will also perform a procedure called a Nissen Fundoplication. About a week after that we will meet with our team, have a pre-surgical consultation, and schedule the surgery. We'll probably need a day or two inpatient at the hospital. We will learn how to administer feedings and care for the stoma at home, and hopefully be back in our own beds soon.

After that, we will pop open the little beach ball like valve on J's tummy every night and pump in the calories he can't get by mouth. Hopefully he will begin to gain the reserves he needs to stay strong & fight the things he needs to. G tubes are generally very well tolerated and effective, and we should see results pretty quickly. While I can't hypothesize about the long term need for the button, I hold out hope and will do everything possible to try to get him to a state of health where it's not necessary to have.

And finally, yes I'm ok. And yes, it sucks. And no, I don't want to talk about my feelings. But ultimately it doesn't matter how I feel about it because it needs to be done.

Saturday, April 23, 2011

Making Good on Keeping Up

Here I am, keeping my vow to not be horribly neglectful of anyone kind enough to humor me by stopping by. (Don't go, I'll write! I promise)
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This week has been a mixed bag of sorts. J is still fighting off the nasty cold that decided to take up residence in his little lungs. After days of mildly consternated indecision, it became evident he wasn't going to clear it on his own, so I bit the bullet and called the clinic. Our nurse proved she's worth twice her weight in gold when she told me we could get his Bactrim on a $4 prescription program at Wal Mart. I'm pretty sure I actually heard angels singing and the clouds may or may not have opened & spilled brilliant beams of light into my kitchen as I hung up the phone & finished loading the dishwasher.

As of tonight, he's not giving up whether he's getting better or worse. The snot factory in his nose has seemingly ceased production, but the one in his lungs has only thickened up. He's feeling happier, but still tires easily. Today we did unbelievable amounts of CPT, poor child got whacked six ways from Tuesday and the rattles just wouldn't give. We even did several sessions in Trendelenburg Position, or Postural Drainage,, with only limited success. If the overnight treatments can't wallop some of the crap out of there, we'll be headed for steroids in the morning.

While I don't by any means relish the idea of the possibility of this bout of illness going from yuck to worse, I do think we will at the very least make it through the end of the month and into the promised land of Insured May without having to go you know where. And no, I'm not going to say it. I've learned my lesson about not being a superstitious blogger.



On to slightly more fabulous news- on Monday, Mike held down the fort at our pizza fundraiser while I attended the nomination dinner for the Family Advisory Council at our Hospital. I am more than delighted to say we were accepted, and have some incredible opportunities ahead of us. Of course, I won't blog about details, but we will have opportunities to be parent mentors for newly diagnosed families, engage in ambassadorships and speak publicly on behalf of the hospital, and have influence in policies & procedures. My heart is so grateful to be in the position to help families suddenly thrust into the world of CF. I'll certainly never forget the days after J's diagnosis, how unbelievably hard even the small things became as we tried to make sense of a world that would do this to our baby. To be able to offer a hand, and lend an ear to someone going through those moments, and possibly help them to feel less alone ...it's a serious privelege and responsibility. To be chosen as someone worth giving this responsibility to, in my eyes, is a great measure of success.

Monday, April 18, 2011

Murphy's Law, or Embracing Superstition

I knew it.....I knew it! Remember last post when I said all that jazz about not being superstitious and how relieved I was Jackson didn't seem to be showing signs of coming down with the nasty virus that has kind of kicked the rest of our butts??? You do? Then you won't be at all surprised to hear that he's now in full-on mucus mayhem. Nose like a faucet, red, teary eyes, constant cough, whiny (mostly because of frequent nose wiping), clingy, tired, and low appetite.


I am not freaking out. Part of me wants to set my hair on fire and run screaming through the streets, A very, very, small part. But the rest of me, the sane and smarter vast majority of me, is taking a more strategic approach. Breathing treatments every four hours, lots of airway clearance, lots of fluids. Keep an eye out for retractions, keep an ear on the stethoscope. Trust your instincts and hope it runs it's course. The snot coming from the drippy little nose is all clear, which is a good sign, and he's still feeling playful and eating regularly, if not as much. As long as these things don't change, we will let the virus do what viruses do and let his body fight it. Should anything change, the first call is to the clinic nurse, and the second is to our social worker.

Wish us luck!

Friday, April 15, 2011

Direct & Indirect, the Cause & Effect of CF on My Wallet, My Heart, & My Purpose

The quandary:

I have to be honest. I've been avoiding blogging, for weeks now. It's not that I don't want to share, it's not that I don't have anything to say. It's not that I've been particularly depressed or hiding out really...Attachment0_001

Things have been very high speed and very high stress, granted. We are passing the month of April on eggshells, completely uninsured. Medicaid did, in fact deny Jackson coverage, as our income is now too high to qualify. If I were to explain to you how much we currently make, and how much private insurance is going to cost us when it does kick in, the premiums, the deductibles, the co pays and out of pocket maximums....well that's still going to cost about 1/4 of our income. And the private insurance is positively slack-jawed & unable to tell us what they will and won't be able to cover for Jackson's care & treatment. They have decided to call in 'experts' to decipher their own medical plans. We have that cluster bomb to look forward to come June.

In the meantime, we will have CHIP coverage come May 1st, & nothing but nothing in the meantime. So of course, this is the time that a virus hits that left me without a voice & only able to sleep sitting up for 10 days, turned to pneumonia for Mike's aunt, & put his Grandmother in the hospital. Knock on wood, spit on the dirt, cross yourself & chant a blessing, J has shown no signs of it so far. I'm not superstitious, but I feel like even typing that is tempting fate. Our social worker has been more like a miracle worker and kept me from climbing onto a ledge during this maddening and frustrating waiting period. She has made sure we have access to enough meds to bridge the gaps in prescription coverage and that I know that even in the worst case scenario, I am not without resources. My heart aches for people in this situation without someone like that in their corner.


It's clear we can't go on like this. My husband is incredible, unbelievable, amazing, and outstanding. He would work every waking moment to take care of our needs, and sometimes, it feels like he does. It pains me to not be able to ease some of that pressure for him. I know there has to be a way to bring in more income & make a less desperate life for us. I've been twisting it around in my brain trying to strangle out a viable plan for months. We've never been wealthy, but we've never gone without. Never in a million years (cliche, right?) could I have imagined that we would find ourselves in this place, where a man who makes his living saving the lives of others couldn't afford health care for his kids. I know other CF moms who's kids attend some form of child care, and I commend you, I really do. And please don't be angry at me that I just CAN'T do that, not at this point. But not doing it has made working almost impossible to bring in any income. And even if I were to work outside the home, I'm short on marketable skills. Yes, I'm intelligent and able bodied, but the last several years on my resume aren't too impressive, unless you'd like a cocktail. (And I loved & was good at bartending but it's a practical impossibility with school, & activities, etc) And it's been so long since I worked in an administrative capacity that I'm not even sure I could be considered skilled anymore.

So my brain has been a rock tumbler, agitating, full of these facts, challenges, & ideas, and a positively insatiable desire to circumvent them all and come up with a perfect solution. And I knew, as I always know, that the idea would find me.


Clarity:

It wasn't my idea. And at first I didn't even pay any mind to it. In fact, I dismissed it completely. I put my feelers out to my circle that I was in need of some creative solutions to our income shortfalls. I got answers ranging from funny to ridiculous, to ultimately really helpful. But one of them crept back to me weeks later when I'd had no intention of heeding it at all. I know that CF has been nudging me to a calling. I know because of the unbelievable people I have met who have changed me, helped me, and made me better. My heart has grown, my priorities have straightened, and my path has become light before my feet. I want to HELP. I want to help people who are in pain. I began to study Reiki after several CFers and parents of CFers swore by it. I"ve since learned that Cancer patients and other people with chronic pain find great relief in it as well. A friend had mentioned I might be interested in a Massage therapy license during my quest for ideas. Out of the churning jelly in my mind, an idea solidified. If I could combine Reiki with medical massage, I could indeed help the very people I wanted to help. (& help my family get by to boot).

I want to provide Reiki based massage for pain relief to the very ill & suffering.

I began to research, and surely enough, there are people who do this. There is massage specialized for chronic pain, cancer patients, terminal disease, and other ailments. I began to research schools in the area , and after MUCH painstaking work, have found one, nearby, that is willing to work around our unusual schedule so I wouldn't have to find extra care for J. (Yes, my mind is BLOWN that they would be willing and able to do that!)

The last standing obstacle in this quest is....you guessed it. It takes money to make money, right? The school ain't cheap. There is financial aid available for LMT certification, if you attend a technical college. Private instruction centers (legit, state licensed, but privately owned & operated) like the one I hope to attend aren't included in funding. Even the 'pay as you go' program is prohibitive in our current state.

I am not giving up on the idea, even if it has to wait, it will be an anxious and productive wait. I won't stop until I find a way to do this. We all search for purpose in the hard things, and I believe I've found my place of purpose.

I don't have the answer yet. And lucky you, I won't blog everything that crosses my mind and leave you with posts of this length. But I won't give up.

Friday, March 18, 2011

Speed

Remember the movie?  Where if the bus slows down it will explode?  That's my dramatization for the pace of life the past couple of weeks.  Our little clan has been flying through days and nights like we might blow up if we break pace.  In the spirit of information sharing, I'll give you the bullet points to keep this from getting too long.

-Jacks turned one!- My father in law and his partner (and a LOT of other people who pitched in) threw us a HUGE luau and it was incredible.  In. Credible.  I hope to share some pictures soon, because my description can't begin to do it justice.

-Cruisin'-  He's walking!  He also decided it was just time to take off and walk. Just like that. No second guessing or failed attempts, he just did it.  Things are about to get really interesting! 

- Sleeping through the night!-  After a year of being a bleary-eyed mama, it looks like I may finally get a little shuteye.  Midnight feedings are now by appointment only.

-Road trips, Spring Break, & a Little Time Together-  Mike is on 24 hour shifts, and we have been cramming the off days with as much as we can while Em is on Spring Break.  Because of custody schedules & work schedules, time together as a whole family is a precious commodity.  Over Spring Break we have made the most of it by acting like tourists in our own city, Hitting up Downtown, the Botanical Gardens, the Stockyards, and anything else local we can get into.  (Pics to come very soon!) We also took a day trip to LLano to see a dear friend get married, and next weekend we're all going to Austin for my run in the Capitol 10k.

The Dark Clouds-  It hasn't been all sunshine & kittens.  We met with our social worker to decipher the upcoming insurance change.  While we're stoked to HAVE it, we're also going to need to find a way to bring in at least another $10k a year to cover the cost.  Considering what the cost of CF care would be without it, that's a drop in the bucket, but it's still going to test our resourcefulness in new & exciting ways.

I also got the rejection letter from Medicaid.  They refused J coverage after the end of this month, and our private insurance doesn't start for a month after that. Apparently we now make too much money. I have serious rage and an epic rant about that statement, but it's not at all productive so let's work in the here & now. What a punch in the gut! Our social worker is a godsend, and has helped me navigate where we go from here.  We may be able to get him covered by CHIP, if we can fast forward through some of the processing time and avoid a lapse in coverage. (CHIP is a state insurance for children)  Because of J's chronic condition (I refuse to call him disabled. Sorry, not giving my kid that label), we may also be able to do a thing called Medicaid Buy In, where even though we don't qualify for traditional Medicaid anymore, it would function as a secondary insurance and help us *maybe* absorb a couple of the expenses of the private insurance.  The state of it all SUCKS.  I can't imagine what it's like for people without our resources to try to figure these things out. Someday I would like to offer a class or a hotline or something for people in this situation to help them be aware of all of their resources (word for the day, RESOURCES!) 

And finally, wee Jacks has had some skin sensitivities lately that have been a bit baffling, and a blister showed up on his thigh two days ago. In less than a day, the area became hard, hot swollen, & oozed blood tinged pus.  We cut short a day of family adventures to get him into the public health clinic.  I was worried about it being a staph infection and that just can't wait to see if it improves.  I stayed home with Em while Mike camped out for hours waiting to be seen (won't miss that aspect of Medicaid).  The pediatrician that saw him quickly dismissed it as a bug bite and sent them off with a topical and an oral antibiotic.  When we picked up all the scripts last night I recognized Clindamycin as a pretty strong antibiotic and called my mother in law (insanely thankful for MD in-laws!) to ask her all my questions.  As it turns out, I'm neither crazy nor overreacting.  Both meds are commonly used to treat staph infections, and it appears that may well be what he's got (the Ped didn't culture the site, so I can't say definitively, but it walks like a duck and quacks like a duck).  With any luck it will respond to treatment and begin to show improvement by later today and I can ease my mind. 


We've been BUSY.  There have been a lot of highs and lows.  And I'm pretty sure all of this has taken place in the space of a week. 

 

Friday, March 11, 2011

Bon Anniversaire

Happy Birthday, Baby. Happy Birthday

It's been a hell of a ride, this last year. I spent all day remembering the day you came Earthside, even flashing back to when your sister did the same. My little people. I can't wrap my mind around how meeting you has given me direction, purpose, and a sense of self I could never achieve alone.

Again and again, I am stunned and humbled at the depths of love and generosity bestowed upon us by friends, family, and strangers alike. What a life they have granted.

These days are fleeting, so we leave a record.

I've yet to grow tired of holding you while you sleep. I'm equally as proud of your growth and accomplishment as I am melancholy to say goodbye to the time as it passes.

I love you.
I love you.
Goodnight.

Wednesday, March 9, 2011

Stay of Execution

Today was yet another "hold your breath until the scale shows a number' day.

As usual I am too bent on sharing the news to give you the whole story, but I will give you a short version.

Jack wouldn't comply with my desire for him to eat a big breakfast. Some Pediasure and some bacon, and we were off to start the day. Check in in the waiting room. Wait.

Wait.


Ok, so we didn't have to wait that long. They called us back, and knowing we were headed straight to the scale, Mike started undressing him en route. Shoes, Socks, pants, t shirt that didn't want to come off of his big head. I choked on my heart while the numbers flickered back and forth and I tried to plug them in to the conversion app on my phone. (weights taken in kg, I am generally more familiar with lbs)

2 ounces.

I stifled every emotion that was threatening me at that moment and committed myself to hearing what the medical team had to say. Mike offered a family hug and I offered a surly "I don't need a hug" sneer. (I'm prickly, sorry)


The dietitian came in and asked how everyone was doing and Good Mom of Good Patient with a Good Attitude said "Good, how are you?" I showed her his food journal and we discussed the improvement in his intake, and she mentioned that he 'did gain this time'. I must have looked slightly confused, and she gave me a questioning glance. "He gained 2 ounces, is that...enough?"

And my heart stopped for just a minute when she replied:

"Six."

"He gained six ounces. His average daily gain was 13 grams this time. (up from 1.3 previously) We would like to see him at 15, but if he can maintain this rate, we won't have to go ahead with the tube."2011-03-08 09.23.15

Good Mom of a Good Patient with a Good Attitude didn't jump up and down, or squeal, or do the most ridiculous looking dance you have ever seen. (Until later)

We have been granted a one month reprieve until the next weight check, and the whole team was pleased that J FINALLY showed some upward momentum.
I personally can't articulate how this small triumph is really a big deal. We've got a ways to go, and the whole thing serves as a reminder that CF is a never-ending battle. But every inch we can take back, every bite we fight for, every intervention we can avoid, and every clear breath he draws is not taken for granted.

My phone has been insane with congratulatory calls and texts. My social media is buzzing like mad. Today I have talked to friends and family in Brazil, Canada, here in the States, England, Ireland, and Australia. I am again reminded that our the roots of our support system run deep and are strong. I am blessed, and humbled, and mindful of the gifts we have, and pledge again to go forward with love and generosity and to help anyone I may be able to.

Tuesday, March 1, 2011

Scentsy Fundraiser

imagesNot to pimp a business in a sacred place, but I wanted to let everyone know that I will be donating ALL proceeds from my Scentsy sales during the month of March to the Cystic Fibrosis Foundation through our Great Strides team, Hope for Jackson. At the end of the month, I will take a screen shot of the sales amount, and one of the donation (I make 25% of gross sales, I will donate all of that for the month of March) on our Great Strides page. If you are interested in participating, you can click the link and go to the "Hope for Jackson Fundraiser" under "Open Parties".
Click Here to go to the Scentsy Fundraiser!
Thank you!


PS I Will also be closing out the SixtyFive Roses Mineral Makeup fundraiser at the end of this month. I would like to show the initial donation deposit for this fundraiser whether I have sold out of the product or not. If you are interested in this project, click on the SixtyFiveRoses Mineral Makeup tab at the top of the blog!

Monday, February 28, 2011

In Limbo (Again)

So....here we are again. Waiting. Sitting in the foot- tapping, watch- checking, nervous-throat-clearing, proverbial waiting room of existence- anticipating, hoping, worrying, and doing all we can do to not burst out of our skin to KNOW something.2011-02-25 18.03.46

I'm not sitting idly by though. I have been combing the aisles of the grocery stores looking for fat-laden, wholesome yet often fryable art in hopes of adorning my son's body with a little extra bulk. To his credit, he has been a willing apprentice, worthy of studying under Kobayashi when it comes to tater tots, cheese stuffed pretzels, fried green beans, pizza rolls, buttery sweet potatoes, and even a whole slice of pizza. Fruit slices sandwiched with cheesecake filling, German sausages, ice cream bites, cheese filled ravioli...the appetite has definitely taken a turn for the chubby. Fear not, friends, he has not forgotten his porcine first love. Just this week he shoved his bottle onto the floor in protest when he discovered I was holding out and had bacon I wasn't serving him.

(Fuzzy phone pic courtesy of Papa Johns!)

While my guts are twisted in a happy dance at his obvious effort to comply with the orders to chub up or tube out, I hesitate to celebrate. There's a week left until weigh in, and no, I won't be able to breathe until then. I have sworn he was looking chubbier and feeling heavier half a dozen times, only to be devastated when the scale refused to give up a gain. Now I am vigilant, militant, and insistent that we keep our heads down and don't celebrate until the goal is on the scoreboard. Onward!

I was caught off guard by a call from clinic today, informing me that J grew Staph A in his culture again. Since he is currently asymptomatic, we didn't start a new course of antibiotics, and are hoping that serious threats and strict compliance will keep the dirty little colony at bay. But nevertheless, a little wind left the sails that it even made its presence known.

Midnight feeding time is nigh, my dears, so I bid you goodnight, and promise to add pictures tomorrow.

Wednesday, February 23, 2011

Your Mother is a Hold Out

I owe a post on the G Tube debate.2011-02-01 14.54.19

But to be perfectly honest, it's just too much right now. I have had loads upon loads of really wonderful, intelligent, and informed input and I am so grateful for my little slice of the CF community. Having said that, I still don't know how to feel. I"m not mopey about the situation, just completely overwhelmed at the decision I am making for someone else. And I can't lie, I am emotionally exhausted after these past months of desperation at every meal time. Hope is a marathon, not a sprint.

What I really want to do is explain myself, the reasons I am considering the tube and the reasons I want to hold out. In all my wisdom I still somehow hold the naive notion that if I just explain myself the right way people will 'get me'.

I'm not GOING to explain myself.

But I will give you this. I'm a hold out, and I will be until I feel I can't anymore. I am lucky enough to have a medical team that, while they feel the tube is our best option now- is fully supportive of my decision to wait a little longer. We negotiated another two months of trying to gain without the tube. If by that point we have seen no significant change in the growth trend....well, I'll cross that bridge when I come to it.

There is a strictly regimented, every 3 hours feeding plan in place, weigh-ins every two weeks, weekly calls to the dietitian, and journaling of every bite of food. Prevacid dose has been increased again in an attempt to alter the pH of the digestive tract and enhance the efficacy of enzyme therapy. I have J's first appointment at Acupuntcture Wellness Center here in Fort Worth tomorrow to try acupressure and some esoteric therapies (again, not going to explain everything, but we are looking into non-invasive, non-chemical treatments). I have started doing Reiki on him every night and have called anyone with some spare mojo to send it into our healing circle.

Perhaps it's a small struggle, compared to some. It's definitely not the worst thing that could happen, and we are otherwise still so blessed that it's kind of ridiculous. Even this is a first world problem. But the pressure is great and I have been struggling to keep perspective. The stress is showing in my marriage, and the emotional fallout from not feeling like I have my partner certainly doesn't make things easier.

It gets better. Nothing stays bad forever. We'll figure it out, we'll learn from it, maybe we'll even learn to help other people in this position. I will turn something good out of this, just not today.

Monday, February 14, 2011

Anticipation & Achievement.

Par for the course, I should be sleeping. But there is a lot swirling around inside my head, and sleep & I are on the outs right now.

We have one week left until the next weigh in, and all of the nerves and internal conflict that that implies. Let's get on with it.

Mike has been made full time, which means we will soon have real Health Insurance. (For all of us!) This makes me almost as nervous as it does excited. I have a lot to learn about claims, deductibles, referrals, co-pays, and the like. WIth a little luck and a lot of research and question-asking, I'm hoping to add it to the list of things I can soon help others with.

Overall, I'm feeling quietly antsy. I don't really feel like my usual verbosly-hashing-everything-out-like-a-John-Cusack-character MO, but it's not because I'm feeling down or anything. I just feel a bit like I'm lying in wait.

Saturday, January 29, 2011

Digging In

It looks like 24 hours was the limit on sad and mopey this go round. A little venting, a few tears, and just a pinch of cursing the universe, and I was ready to take the proverbial bull by the horns.2011-01-28 17.54.30

I'm taking a two pronged approach to the situation, the first of which was a major grocery shopping spree. At the advice of the dietitian, we are experimenting with more solid foods. High fat solid foods. So I went on a mission for natural (low/no preservatives, meat raised without antibiotics, pesticide free produce) treats that could be made high calorie and high fat. After two days, I have a freezer full of mini tacos, mini cheeseburgers, sweet potato fries, regular fries, mozzarella sticks, mini chicken sandwiches, and nuggets of mac-n-cheese. I also bought a deep fryer, perhaps the most counter intuitive purchase of my life. I've discovered you really can batter and fry anything, from green beans and apples to girl scout cookies. A little egg wash, a little wheat flour, and toss it in the oil. I'm not feeding J an exclusively fried diet, but I am doing a lot of experimenting with what can be done with this marvelous machine. I also re-stocked on Olive oil mayonnaise for dipping. So far, cheeseburgers and chicken fingers are the clear winners, and seeing J's enthusiasm for new foods after his recent rejections of almost everything is encouraging.

Prong two is research. Reading about the what, when, and how of G tube placement, care, and use helped a lot. Selectively talking to other parents who have been where we are is also a tremendous help. I say selectively because I don't and won't talk to just anyone about these things. There is a lot of hyper- negativity and hyper-positivity based on one's own experience that can hinder real information gathering and/or influence my experience before I've even had it. But advice and reflection from people I know and trust is invaluable. Mike and I sat and watched tons of you tube videos tonight too. Laprocsopic placement of the tube, placement, changing, care, and cleaning of the button, and the start to finish procedure of administering bolus feedings are no longer a mystery. I am someone who needs to be armed with information!


Tonight I feel good. Okay, I at least feel better. I have prepared us and Jacks in every way I can at this moment. We are actively following all protocols to try to avoid needing tube feedings. But in the end if the struggle is too great, I know what to expect and feel prepared to face it. I will also know at that point that we did everything we could and that the time is right to ease Jackson's struggle to grow by medical intervention. I read in a friends blog yesterday, "YES, things SHOULD be different. But they're not, and until and unless things change, you have to learn to function and succeed within the reality that is, rather than the ideal that should be." And it was EXACTLY what I needed to hear, and I plan to do just that.




(If anyone would like to see the videos, shoot me a message. They are very informational but I hesitate to post them due to the graphic medical nature of some parts. It should be something one chooses to see rather than a visual assault upon entry.)

Thursday, January 27, 2011

Frustration and Darkness

The darkness refers to my mood.

As hard as I work to contribute positive energy and work in the world of CF, I, like all of us, have dark days.

It's not that we got terrible news. In the grand scheme of things, Jacks is still doing fantastically well. Well, except for the fact that my growing child hasn't gained an ounce in almost 4 months now. Since his hospital discharge, J has held steady at the 20 lb mark. He's dropped from the 90th percentile to skimming below the 25th. And while I struggle to maintain a winning outlook in spite of his slide down the growth chart, I might just slap the next person who says "with those cheeks/arms/legs? No way he's struggling to gain weight." Put this on your list of things to never say to a parent of a CF kiddo. I know it's well intended, but it falls under the "But you look so healthy" category. I could have kicked myself when I scrambled for the unit conversion app on my phone and discovered that in spite of everything- the massive calorie counts, the midnight feedings, the charting, the frying, the whipped cream- my smiling little boy sat on the scale weighing EXACTLY what he did a month ago when "the weight" became "the issue". I could have SWORN he was packing on pounds. I could have sworn his face was fuller, his thighs more robust.

It's not TERRIBLE. But it's disappointing as all hell, and it brings up all the nasty, mucky, dirty feelings that I most often don't have to face, like the crap at the bottom of the fish tank that swirls up when you add water. Fear. Anger. And Mortality. You can argue with me all you want that mortality isn't a feeling, but you'd be wrong. Driving home today I caught a particularly stunning view of the late afternoon sun, framed by artfully brushed clouds and towering oak branches. Most days I would have only been struck by the moment of extreme aesthetic pleasure. Em and I talked about how very beautiful it was, but in my head I only thought, "it means nothing". Not my usual MO.

We have another month to reverse this trend. Meds have been tweaked for probable reflux issues, eating plans altered, and I kid you not, a deep fryer has been placed on my kitchen counter. NO, the situation is not yet desperate but it is on a steady decline, and today we were told that if it continues after yet another intense effort to gain, it will be time to discuss 'other options'. Feeding tubes are not the end of the world, and if they help Jackson grow and be healthy, then we will embrace it.

But all things being equal, today is a black day. I'm pissed. I can't shake the angry feeling of having done everything in my power and it not having mattered or been enough. I feel like swearing at everyone I meet. I don't feel kind or altruistic or helpful or any of the things I want to be. Nope, today I want to kick the dirt and exclaim "it's not fair".

I'll get back up. I'll feel like fighting again tomorrow, and teaching Jacks to fight- for someday this battle will be his alone. And I'll remember that my path is to aid in easing that battle.