Doors

I can't believe I let the entire summer pass without an update!  There is so much going on in our family.  We're facing a difficult time right now, but more on that later...

I'll pick up where I left off... Ari had urodynamics to test his bladder function.  I hate that test.  It's painful, traumatizing (for Ari AND us!) and not exactly accurate... it's a snapshot in time and not indicative of what happens before or after that moment.  Imagine Ari with a catheter taped into his mitrofanoff (the hole in his belly button that leads to his bladder) and a probe taped into his anus.  Yep... you read that one right... wide awake, no anti-anxiety meds and a probe up his bottom.  Liquid is them pushed into the mitrofanoff, filling his bladder.  The purpose of the test is to check for the point where urine (or the fluid being forced in) leaks out.  I'm here to tell you that my son leaks urine ALL. THE. TIME.  It constantly drips out, even during his catheterizations or right after emptying his bladder.  Add a little bit of exertion or running around and he doesn't stand a chance of staying dry.  Yet, every time he has this test, he tightens up so much due to the discomfort of the probe that he holds the urine in.  It's a reaction and not something he can control, but it happens every time he has urodynamics.  So... according to the study, Ari has bladder control and he can hold over 500 cc of urine, which is completely way too much for a child his size.  Average should be about 240 cc.  The large volume in his bladder is so painful for him.  I actually stopped the test before he leaked anything due to the pain he was experiencing.  Bottom line is we've done this test repeatedly with the same result and then the same leakage occurs.  Trust me when I say he cannot feel when he has to urinate and cannot feel the leakage, but he certainly can feel the pressure of a bladder artificially filled with a dangerously high amount of fluid without the ability to release it on his own.  I'm not allowing him to do this test anymore... at least not for a while, which is fine because we decided that waiting is the best thing for him anyway.  His scrotum is too small for the pump that is needed for an artificial urinary sphnicter.  We are waiting until he grows physically and emotionally before taking that step, which will be in 5-7 years.  Plus, who knows what medical advances will take place in that time period?  Decision made, it's time to move on.

We have purchased a couple of things that have made a positive impact in managing Ari's incontinence.  The first is a medical watch that vibrates when he needs to use the bathroom.  As I mentioned before, he cannot feel when he has to urinate.  The more time that passes, the more he leaks.  This watch is a gentle reminder that he needs to be catheterized or sometimes he'll even go to the bathroom and can force urine out the traditional way.  He never fully empties his bladder when he does this, but it helps... especially when he is at a friend's house or away from us for an extended period of time.

The second thing we purchased was a new type of underwear made by Huggies called Tru Fit.  They look like real underwear, but have a plastic, elasticized lining that holds a disposable pad.  I cannot begin to tell you how much of a positive impact they have had on Ari's life!  Here's a picture... He's so proud!

There's only one problem with wearing the underwear instead of a pull-up... bowel accidents.  Just typing the words brings on a rush of emotion for me.  Our lives revolve around Ari's bowels.  We're still doing his flush via cecostomy, the button on the right side of his body.  It doesn't matter if we flush him every day or every other day, he still has accidents.  Can you imagine scheduling an hour in a bathroom every single night?  Liv has practice and we have commitments, yet we have to find the time to do it.  NOW imagine dedicating the time and then your child has unexplained bowel accidents between flushes.  Sometimes it happens right after a meal and other times it's just out of the blue.

There is one trigger that we know for sure and that is overheating.  It's August in Atlanta!! Of course it's hot!!  All it takes is one outdoor game with the neighborhood kids and everyone knows what's coming... Ari is going to poop... and once it starts, there's no end in sight.  The only way to get him relief is to do his flush again.  His bowels have us trapped.  I pray every time he gets in a pool that he doesn't have an accident.  I pray that the kids at school don't know what is happening and that he doesn't become "the kid who poops his pants".  I pray that we can go out to dinner without using my entire supply of pull-ups before getting home.  I pray that I can change him and remove the acidic poop from his bottom before he goes again, uncontrollably, on the floor of whatever bathroom we're in.  I pray, I pray, I pray... and you know what? It still happens... way too often.  I realized that God is not going to control his bowels, so now I pray for guidance toward the solution.

I truly believe there is a connection between Ari's autonomic nervous system, overheating, and gastric dumping.  I'm on a mission to find the root cause of the problem, which may, in the end, just be the way he is made.  I am going to help him live a better life and find a solution for him, even if it means after all efforts are exhausted, going back to a colostomy.  I want him to have the freedom of running around and being a kid and simply not worrying about having an accident.  This is an ongoing mission and I'll keep you (promise!) in the loop as we progress.

So many other things have happened recently.  Ari started 1st grade and Liv started 5th.  Once again, I am pleased and humbled by the accommodations the school has made for Ari.  Here's a picture from the first day!

Ok, it's a little blurry, but I love that they are laughing together.  Liv's cowboy boots are cut out of the picture, but totally made the outfit.  She's growing up!

And now for the difficult time I previously mentioned.  Remember the whole "financial nightmare" post from April?  Yeah... if only that's where it ended.  In April, Larry's company reorganized and he was promoted.  There was an opportunity for us to move to California and for a multitude of reasons, we decided it was not the right thing for our family.  I'm grateful we made that decision, because in the beginning of July, they reorganized again and Larry was let go.  Let's put this into perspective... recently promoted, successfully managing a team, attaining prominent new customers is a vertical segment where they didn't have a presence before, got along well with everyone in the company... the list goes on.  So why, you may ask, did this happen?  I have my own theory and it's one that's not unfamiliar to us.  I think our family was too expensive for this small company to insure.  We can't prove this, but I know benefit review was late June for open enrollment in July.  Ari's durable medical equipment and surgeries were not cheap in 2013.  This happened before, when Ari was still in the NICU.  At that time, the company actually told Larry that we were too expensive to insure and held his commissions, severance, and insurance over our heads in lieu of signing a paper waiving the right to sue them for wrongful termination.  This stuff really happens... hard to believe- right?

Anyway, what's done is done and we're left in a situation with no income and no insurance.  Sure, we can always do COBRA retroactive to August 1st, but the Company's new plan started on this date as well and has a deductible of $6,000 (minimum), plus $1,600 per month premium, plus copays (50% for DME).  That's a lot to pay when hopefully new employment and new benefits are just around the corner (I hope!!).  Our DME costs have gone down significantly since we are no longer using the g-tube (I'll update that in my next post!), so we are only purchasing catheters right now.  We have self-payed for all medical care and supplies so far, but it can't last for much longer.  One trip to the hospital and we'll be in a very difficult situation.  This is the part when many of you will suggest looking into ObamaCare.  Let's just say I looked and even tried to move forward with it and it is NOT an option.  I'll go into detail about that in my next post as well.

Surprisingly, our spirits are high.  The kids are happy, our marriage is strong, my parents are here and amazingly supportive, and we are starting attending  Northpoint Community Church where the current series addresses "what to do when there's nothing you can do". It's so pertinent to us right now.  We've overcome so many challenges as a family.  I'm able to look at this time and not feel like the world is ending, instead I have a feeling that a door is about to open for us... one that will lead us in a new direction and hopefully bring contentment and security to our family.

Until next time...
XOXO,
Jodi

Reflection and a Look Ahead

For many years, Larry and I have attended a Derby Party benefiting Children's Healthcare of Atlanta.  Many of our friends support this event as well, donning fabulous hats and Derby attire.  I had the honor of speaking as a "patient family" on behalf of Children's at this year's event.  Though I've spoken a dozen times for Children's in the past, speaking in front of my friends made me nervous.  My friends all know and love Ari, but most didn't know his history or ever see pictures from some of the really tough times.  I had the opportunity to share his story, and now it's as if a weight has been lifted from my shoulders... the unintentional secret is out there.  They have a glimpse into the past six years and can piece together how the course of events helped shape us into who we are today.  They also heard a little about how much time we invest daily into Ari's care.  I think this part was the biggest surprise for everyone.

It was hard for me to relive the past, telling some stories I tried to forget and some I never want to.   I really believe that for a few, the responsibility we bear is too much to bring into a friendship.  I wonder if some people made a mental note of this and they'll gradually start to pull away.  On the flip side, maybe they admire how we've handled the challenges and want to join us on the journey.  We never know, but I can say with conviction that we appreciate each and every friend who has welcomed us into their lives and treat Ari like he's just one of the boys. We are also so grateful when  their children treat him like a peer instead of a kid with special needs, making accomodations without drawing attention to it.  

On a different note, things are good right now, but they're about to change as we prepare for the next major surgery.  As most of you know, we manage Ari's urine output by catheterizing him through a channel that his urologist created out of a piece of bowel called a Mitrofanoff.  It goes from his belly button to his bladder.  This works well, but the Mitrofanoff kinks, making it impossible to catheterize Ari at times, which could lead to kidney damage.  Additionally, despite frequent cathing,  Ari still leaks urine, requiring him to wear a diaper.  We're lucky that he can still fit into size 5T pull-up, but this is the largest size.  The next stage is adult-style incontinent diapers.  As he progresses in school, we see this as a major social setback for him.

Ari has Urodynamics this Wednesday, a fluoroscopy test (that he hates!!) that measures the bladder and urethrea's function and efficiency.  He will also have a VCUG (voiding cystourethrogram).  The outcome will be reviewed at an appointment on Friday.  The next step will most likely be an artificial urinary sphincter.  It is a large, invasive device with a cuff that wraps around the urethra, a pressure regulated balloon that would be placed under the abdominal muscles, and a control pump that would be placed in his scrotum.  He would most likely have a Mitrofanoff revision at the same time.

I hate the thought of another summer where our plans revolve around a surgery, but it's better than doing it during the school year.  Who knows, maybe Ari will start 1st grade without a pull-up?  There's one caveat... he has uncontrolled bowel dumping, too.  It doesn't happen often, but when it does, it's bad.  Last week it happened twice, before that it was 3 weeks.  Do we risk putting him in underwear, knowing a bowel accident could happen, but most likely would not?  I'm open to opinions on this one. Maybe we should wait until he gets a little older and recognizes the signs that it's about to happen.  He said he can't feel anything, but many there's a little sign he could identify later?  Obviously, there is still a lot of unknown.  I'll send an update after we determine next steps with his Urologist.  Please pray for calmness, bravery, and tolerance for him during this Wednesday's testing.  He needs it! Thank you!!  More next week...

Larry and I at The Derby Benefitting Children's Healthcare of Atlanta

Insurance Fail

I've mentioned time and time again about my fear of losing Ari's secondary insurance.  Well... it happened.  I've resigned to the fact that I've lost the battle, which quite frankly, shouldn't be a battle at all.  I've been fighting this since July.  JULY!!  Nine months of paperwork, forms, letters from doctors, discharge summaries, surgical images... you get the idea.  It's all very sad on so many levels.  

So many people ask me how this could happen, so here's a brief explanation...  The Katie Beckett Deeming Waiver was created for medically fragile children who have significant medical expense, but do not qualify for SSI or Medicaid.  There are three ways to be eligible:

1- The child needs extensive rehabilitation services such as OT, PT, and Speech.  Examples of these children would be ones with cerebral palsy, down's syndrome, or autism.

2- The child has known hospitalizations of 48 hours or more scheduled for the upcoming year.

3- The child does not require hospitalization, but has medical interactions that are usually performed by a licensed nurse on a regular basis.  These children are often considered medically fragile and have an underlying medical condition.  This child must require skilled nursing on a "regular basis".

Ari always qualified in the third category since he had home health nursing since birth.  Last summer, we were denied additional nursing hours from our insurance company and instead of fighting this decision, we took it as a sign that I should care for Ari full-time without the assistance of a nurse.  This would create a more "normal" home life as he prepared for kindergarten.  There are a lot of medical interactions throughout the day, but I cherish every minute of it.  It's often hard to juggle, especially at night if Larry is traveling and Liv has practice, but we manage.  We stick to a strict schedule and my parents step in whenever we need a hand.  (They deserve a huge THANK YOU!!) We've all been so happy with our new normal.  

I had no doubts that Ari would be approved again and was shocked with the first denial.  The bottom line is we needed nursing to qualify.  Most families in our situation have nursing.  We are being punished for taking care of our child without assistance.  During this period of time, a court date was set to fight the Katie Beckett decision.  I was told if we got nursing reinstated, I had to withdrawal my appeal and reapply again to the program.  In other words, start all over.

Resigning to the fact that we were going to have to allow someone in our home again to give Ari the care that we are capable of doing ourselves and knowing the financial impact of losing Katie Beckett, we applied for nursing again, which is a major process. 

Nursing was approved,  I found an agency and they started the "case" (ugh- I hate that word) for Ari.  We now have nursing 3 nights a week.  The whole family dislikes the disruption to our lives.  It's so uncomfortable.  Easy things like adjusting his g-tube feed or giving Motrin needs a doctor's order.  He has to stop his playdates to get an assessment and they're just... there... all the time.  It was different in the past.  Ari was a toddler, I worked,  and we loved our nurse.  Now that he's in school, he wants to come home and play, not be a patient.

So... we canceled our appeal, reapplied for Katie Beckett, and then... received a denial.  After all everything we went through, the amount of nursing hours used was not enough to qualify.  We needed daily care, not just three times a week.  Our insurance would cover more hours for only a short period of time, then we would need a program called GAPP for more hours.  The only way to get GAPP is to have Katie Beckett.  We are in the nursing black hole.  The larger problem is we do not want the nursing we have, let alone more hours.

Larry and I decided it is in the best interest of our family to not have any nursing.  So, We are losing financial assistance because we are competent, responsible parents.  Something is very, very broken here.  

The impact of losing Katie Beckett is monumental to our finances.  It's our worst case scenario come true.  Our primary insurance covers 50% of durable medical equipment.  Catheters and feeding supplies alone are $3,700 a month (bill rate).  This doesn't include appointments, medications, procedures, or hospitalizations.  We don't know what our portion will be yet (it's harder to find out than one might think), but it's going to be financially devastating.  

We talk about me going back to work, but Ari's care is so intense and unpredictable... he really does need me.  As it is, I'm never far away from him, even when he's at school.  I'm not sure what we'll do...  just survive, I guess. We still need to do things that typical families do for the sake of sanity... occasional vacations, dinners out, etc... we don't want to be judged for doing these things because we have medical expenses.  At some point, we all just need to LIVE... enjoy our families and friends and accept that there's a path for all of us... we just don't always know which way it's going to bend.  

Happy

Happy New Year!!

Things have been (dare I say it?) good… no… GREAT around here.  Our lives have been boring, uneventful and wonderfully void of any major medical emergencies.

We had a rough start with the g-tube (PEG) placement.  Ari's abdomen swelled and the tube had to be adjusted post-op.  This is a simple, pain-free thing to do, however not for Ari. The clamp was stuck and it took multiple doctors many painful attempts to get it.  Ari was resentful for the pain and verbalized it quite clearly to me.  "I don't like my new tube." "This surgery was yucky." "Why did you make me do this?"   He never said anything like this to me before and it broke my heart to hear.  I hid my sadness and offered him the best answers I could.

He developed an infection before we left the hospital and after one day of IV antibiotics, we went home with strict orders to return if it worsened.  We were only home two days before we had to go back and get admitted again.  When this happens we have to go through the ER, which was a nightmare… Standing room only and 7 hours from the time we arrived until the time we were in a room.  We were both exhausted.  Here's a picture of Ari waiting to go back.

This was one of the few times Ari wasn't "sick" in the hospital… he just needed IV antibiotics, so we took advantage of some of the hospital activities.  He went to party after party, dragging his IV pole along with him, making crafts and enjoying the change of scenery.  Volunteers really do make a difference at Children's hospitals.  The Delta Airlines party was so cute… they had flight attendants serving hot cocoa, gave out stuffed airplanes, made crafts and even had a real pilot  and photographer there to take and print photos as a keepsake.

We were in The Zone, an fun area in the basement of the hospital full of games and crafts when his nurse called me on my cell phone, instructing us to return to our room immediately because the lab results came back and Ari tested positive for MRSA… again.  Immediately I thought of his last MRSA infection that kept him in the hospital for over a month.  From that moment on, we were on isolation and not allowed to leave the room.  It was hard for Ari to understand why the rules changed when he didn't feel any different, but Child Life took great care of him.  He had a Wii console pre-loaded with 17 age-appropriate games in his room and an endless supply of craft supplies.  We did every single worksheet that his kindergarten teacher provided for us, hanging each one up by medical tape around the room once completed.  Liv spent as much time there as she could, reading to him and playing games.

Days later, when the admitting doctor rounded, we inquired about the status of the MRSA infection.  He looked at us, puzzled, telling us Ari has an infection, but not MRSA.  He checked lab results and made some calls.  There had been a mistake all along.  This was good news for us, but oh so frustrating.   So, after almost a week in the hospital, we went home on oral antibiotics and hoped the infection would stay cleared and he would not need IV antibiotics again.

We took every precaution we could, but two hospital stays meant lots of germs and Ari became sick with a cold that settled in his lungs, complete with a croup-like cough.  He ended up missing most of the next week of school as well.  I know I've said it before, but our school is amazing.  The way they work with us has far exceeded our expectations!

Our winters with Ari are always like this, so we took it in stride, resigning to the fact that things haven't changed, but the strangest thing happened, or shall I say, DIDN'T happen… Ari has been healthy… really healthy.  The strength he has gained since the addition of g-tube feeds to his regular, adapted eating has been nothing short of miraculous.  His weight is still the same, but he's so much healthier.  His eyes don't look as sallow and his energy is non-stop.  It is a beautiful thing to see… reinforcing our decision to insert a g-tube again.

We've erred on the side of caution this entire break, avoiding travel and crowds and it's payed off.  School starts up again this week and his extra strength will come in handy.  We're so proud of how he helps with the feeding pump and takes responsibility for the feeds.  He's playing on a basketball team and got 2 baskets (or "scores" as he calls them) on Saturday, and sings and dances nonstop.  Seriously… nonstop.  Liv wants to be an orthopedist when she grows up, but Ari… he just wants to sing and dance and travel with his daddy.  I love it.

On a different topic, our appeal to our secondary insurance got denied again.  The next step is a trial.  If anyone knows of a local attorney (familiar with the Katie Beckett Deeming Waiver) who would be willing to help us, we would be so grateful.  Please let me know! My personal email is jlshumbres@gmail.com.   Based on our current primary insurance plan, the financial impact to us will be nothing short of devastating, especially as it pertains to his monthly catheter and feeding pump supplies.  It is baffling to me why someone as medically fragile as my son continues to get denied because "he does not require nursing interventions every 4-8 hours", "Services are not required 24 hours a day", and  "there are no further procedures which require hospitalization" coming up.  WHAT?!?  That's just some of the reasons they stated, all false.

We wish all of you happiness, success, and HEALTH in 2014- we're certainly praying for that in our home!

This picture was taken during our first weekend away since Ari was born.  A huge THANK YOU to my parents for taking on the responsibility of Ari's care and Liv's crazy schedule for the weekend so we could go to Philly for Larry's office party and a special night with my brother and sister in law and then his brother and fiancee (now wife!).

Fear

So I ALMOST set a record for longest time between blog posts.  Seven months is bad… I'm sorry!  Based on how many of you have approached me about a blog update, I realize that the writing is not just therapeutic for me, but important to you.  Thank you for inspiring me to start writing again!  I decided that I'm going to start posting more frequent updates in addition to the longer blog posts.  Hopefully this will keep me from getting overwhelmed by the amount of information that needs to be covered.

I'll be catching you up over the next few weeks, but for now I have something on my mind… something that I feel a powerful need to share…

I'm scared.

You all tell us how strong we are, but you need to know that this fear exists.  Every night, we put Ari to bed and listen to him choke and cough as he falls into a deep sleep.  I'm so thankful for his adjustable bed.  It helps, but he still chokes and sometimes even vomits in his sleep.  I listen to him and fear that he'll aspirate.  Every. Single. Night.  We have a baby monitor and hear him gurgling and coughing all night long.  Sometimes he settles into a position where the saliva drains.  One would think I find comfort in these quiet moments, but it's quite the opposite.  These are the times I run into his room to make sure he's still breathing… actually rousing him from his deep sleep to confirm, without a doubt, that my child is ok.

I'm scared he's going to die.

Do you know how hard that was to write?  I think about it… way too much.

Reality slapped me in the face when I was filling out paperwork for his secondary insurance.  His pediatrician (whom I adore) wrote the words Larry and I thought, but rarely spoke, in his letter.  "Ari is the most medically/surgically complicated patient a doctor has.  His complexity requires fluctuating amounts of attention.  Many times he has life threatening episodes which if not properly attended, will lead to death."

I read this over and over again.  Of course Larry and I knew this… why was it so hard to read from someone else? Want to know the real kicker?  We got denied for his secondary insurance.  They said his condition does not require frequent medical interactions and he did not have any upcoming surgeries that would require additional medical care.  REALLY!?!  I guess catheterization through his belly button every 2-3 hours and spending an hour plus on the toilet doing a bowel flush every day doesn't count.  Oh, and despite these 'frequent medical interactions', he has no urine or bowel continence.  Let's not overlook the fact that he has ZERO peristalsis.  We had a test a few weeks ago and this was confirmed.  Other than a strong swallow, Ari has no esophageal motility to push food into his stomach.  No wonder food gets stuck so often!  According to the doctor that did the test, "This is as good as it's going to get until medicine advances."  So now, on November 15th, Ari is having a G-tube inserted into his stomach again.  So in addition to the daily medical care mentioned above, add frequent g-tube feeds.  None of this was good enough to get him approved.  We're in the appeal process right now.  Who knows what will happen, but I can tell you the the financial impact of losing this insurance will be devastating to our family.

I'm scared we'll go into financial ruins paying for medical bills despite having good primary insurance (for now).

Here's one I'm pretty sure you haven't thought about… I'm scared to be more than a few miles away from Ari at any given time, especially when he's in school.

I can't wait to tell you all about the wonder experience Ari is having is kindergarten.  His teacher, Lisa Boone, is a true blessing to our family.  We really couldn't do it without her.  Ari's having a great year, but there's always a lot of questions surrounding his care.  What if they need me?  What if his button (soon to be button and tube) gets pulled out?  What if he chokes?  What if he experiences gastric dumbing and can't stop pooping? I need to be close to him at all times and it's mentally and physically trapped me.  The school has done a great job (props to Sharon Elementary!) of managing his care, but I'm the mama and when he needs me, I want to be there.

The crazy thing is, none of these fears will go away any time soon.  It's our life… we're used to it.    Sometimes I think people view Ari's care as difficult, but it's not at all.  He's such a joy in every aspect imaginable.  Fear is the true burden… the words not spoken (until now), the weight on our shoulders.  As we gear up for his surgery in less than a week, we have to face a new set of fears… anesthesia, surgery, infection, healing, his emotional well being, LIV'S well being, pain… the list goes on.

Ari spiked a fever last night and started hallucinating.  Quite frankly, it creeped us out… enough that Larry slept with Ari all night.  Is it a sign?  The power of the unknown is almighty… At this point all we can do is pray for clarity and hope we make the right decisions.

Happy in the The Digs at school

Ready to go before his last procedure

Butchie from Teen Beach Movie for Halloween

You can't make this stuff up!

I let a lot of time past since my last post.  I crafted all sorts of updates in my head... The expected "Why I'm Thankful" around Thanksgiving and "Holiday Blessings" around Christmas.  I have no good reason for avoiding writing... I just did.  Once a certain amount of time passes, I no longer know where to start.  Do I give a recent update, ignoring the time that has lapsed?  Or do I give a recap and move forward?  I decided on the latter, and for those of you who do not follow my Facebook feed (Roar Little Lion- Ari Shumbres Updates), you're in for quite a story...

The day after Thanksgiving, my parents left for a 17 day Mediterranean cruise.  They both had their own health challenges over the past few months.  My father had to have his newly replaced hip reconstructed after shattering his femur, which caused the hip to repeatedly pop out.   My mother had a long overdue surgery on 3 damaged vertebrae in her neck.  They deserved this special vacation, but as the saying goes, timing is everything...

The day they left, Liv fell tumbling in the yard and broke her back.  Yep...you read that one right.  Only, I didn't know she was seriously hurt.  I sent her to cheer practice, tumbling and then fly class before she came to me with the admission that she was still in pain.  Tough girl!  I guess it runs in the family.  Five days after she fell, I took her to the doctor to find out that she had a compression fracture between L5 and S1.  We had to pull her from cheer for the whole season.  She couldn't carry over 5 pounds, bend, twist, jump, run, pull, etc... for 10 weeks.  Do you remember my last post?  The one that mentioned her dedication to her sport and how it is a critical escape for her?  Yeah...  this was a "less than ideal" situation to say the least.  She actually handled it better than I did, mostly due to how her coach/gym owner handled her injury.  He was so genuine when he spoke to her, encouraging her to heal and to listen to her doctors and reassuring her that she'll return next season even stronger.  He told her that she's still part of the team and could now help coach... even making the "official" announcement to her teammates of her new role.  His impact in her personal acceptance of her injury and healing was HUGE, and I was once again grateful for our ATA Family.  What an amazing organization.

Less than a week after Liv's injury, both kids woke up vomiting... a first for Ari. I thought it was a stomach bug, and in Liv's case,  it was.  She's stoic and prefers to be left alone when she's sick.  At one point, I checked on her to find out she had been sleeping on her bedroom floor.  She actually asked me to leave her there and told me she had it all under control.

Ari was another story... something was very wrong.  Was is a bug? Was food stuck? Was there another underlying illness?  Night after night, he gagged, choked and gurgled.  We took turns sitting in a chair with him to keep him upright.  We didn't sleep at all for fear he would aspirate.  I didn't know who to call.  GI seemed logical, but when I called the practice in the middle of the night, the doctor on call literally told me there was nothing he could do for me.  I had to either take him to the hospital or deal with it. Really?!?  If I could deal with it, I wouldn't be calling.  I spoke to our pediatrician, too.  He was helpful, but didn't know what to do either.  We decided to take him to the hospital... Ari was getting weaker by the hour.

The hospital thought it was a stomach bug and admitted him, treating him for nausea, dehydration and a UTI.  He went a week without eating, looking sallow and sickly.  I so wished my parents were back.  It seemed like they were gone forever.  On a whim, I sent my mom a text telling her that I missed her.  It was upbeat and cheery.  Just in case she actually got it, I didn't want her to worry.  When Ari's condition didn't improve, the attending doctor (GI, but not his primary one) ordered an esophagram.

Ari in the hospital looking weak

It was Saturday... I remember it so well.  Down to fluoroscopy 3 we went.  He hates that room, but didn't cry... he was too weak.  The image on the screen was shocking.  There were bulges and bends I had never seen before in his esophagus. The barium barely moved.  They asked us to come back in 45 minutes to take additional pictures.  I wheeled Ari around the empty radiology unit, looking at Christmas decorations and making the time in the deserted halls feel like an adventure for him.  Inside I was screaming, crying, sad, angry... scared.  On the outside, I was going on a treasure hunt, pushing my child in a wheelchair.  The second set of films didn't look any better and Ari was scheduled for an emergency procedure that night.

I always get nervous when a doctor not familiar with Ari's anatomy has to operate on him.  The doctor admitted he was apprehensive to work on him, too.  I asked him to call Ari's primary surgeon, Dr. Bleacher, and see if he was in the hospital.  He created Ari's esophagus and needed to know what what was going on.  I am so grateful he was there... I later found out that he scrubbed in for the entire 2.5 hour.

I'm thankful my cousin Rebecca and her husband were in town.  We could not have kept Liv as distracted without them, especially since she couldn't be outside running around with her friends.  Larry had already gone home to help with Liv when the nurses came to tell me that the OR was ready for Ari.  I felt so bad that he wasn't there.  It's happened to both of us so many times with procedures in the past.  It's heartbreaking as a parent... Could you imagine not being there when your child is put under anesthesia with a breathing tube?  It's a guilt that never really goes away, but when it happens enough, we become somewhat numb to it.

After Ari was taken through the doors into the OR, I walked alone to his room- refusing the nurse escort back.  I knew my way around the surgery halls and was not in the mood for small talk.  My heart  was literally breaking.  I was praying... crying... face in my hands, sitting all alone in his room.  I was startled when a text message came through.  It was my mom and it said "Miss you so much too!" How could she text me? They were in the middle of the Atlantic on their 7 day return to the US.  I immediately text back "Mom! Are you there?!"  My phone rang... it was her.  Emotion rushed over my entire body.  She randomly picked up a weak cell signal and sensed something was wrong.  I didn't want to tell her, but she insisted.  It was so comforting to talk to her.  I can't imagine what that call cost, but to me it was priceless.

Feeling a little more calm, I waited and waited, receiving a call every hour or so from the OR.  I know I've said it before, but I don't like these calls.  It does't give me peace of mind, it gives me a visual.  "The breathing tube is in and the doctor is starting the procedure.", "They are about to finish and close him up.", "The doctor is still working."... Ugh.

A few hours later, Dr. Bleacher walked in.  He sat down to talk to me.  I could tell by the look on his face that the news was not good.  Ari's esophagus looked awful.  It was packed bottom to top with a week's worth of food.  Nothing could pass through it.  It was thickened, covered in yeast, stretched in new places, bent, and narrowed.  The way it looked, it was not viable in his body.  For 2.5 hours, the GI doctor picked out food, piece by piece.  Even then, he couldn't get it all.  This was devastating news for us.  If transitioning to purees and soft foods and treating the infection didn't work, we will have to come up with another plan.  Words he never wanted to say and I never wanted to hear were spoken.  We may have to remove the esophagus, go back to a spit fistula and g-tube, and start over.  This was not going to happen without a fight from all of us.  Once again, I felt heartbreak for my son who was suffering, but not once did he complain, and gratitude for Dr. Bleacher for his genuine dedication to my family.  As he was leaving the room, I said "Thank you so much for scrubbing in tonight- it means so much to us."  He stopped in the doorway, slowly turned around and said, "Well, Ari means a lot to me."  I believed him.

pre-procedure images

Once discharged, our goal was to get through the holidays and schedule an esophagram and esophageal scope with Dr. Blecher and Dr. Blumenthal (his primary GI) in January. We lived each day with a fear of choking.  He still was having difficulty at night and his weight was down. I remembered my friend Brandi telling me that her brother Rick Graham owned the local America's Mattress stores, so I reached out to her to see if he'd be willing to assist us with the purchase of an adjustable bed.  I tried to get insurance to cover one for years, but they denied our request, even with letters from multiple doctors and copies of hospital bills that could have been avoided if Ari had not aspirated in his sleep.  These beds were expensive and any discount would go a long way.  Before that day was over, Brandi had reached out to her brother and said he'd be happy to help.  I know I looked awful going in there.  By that point, I had gone over a week without a good night's sleep and was emotionally as well as physically exhausted.  Imagine my surprise when Rick told me about a recent sermon he heard at his church (North Point) about giving from one's own means and he was moved to know that what he had the ability to provide (the bed) could have such a positive impact on a child's life.  Rick, in an amazing act of kindness and generosity, not only gave us the bed, mattress and waterproof mattress pad, he made arrangements for it to be delivered that same day so Ari did have have to sleep another night without being at an incline and we, as parents, could rest easier.  God Bless Rick and America's Mattress.  He changed our life.  Who would have known that a bed could make such a difference?  For the first time in Ari's entire life, he didn't choke, cough and gag at night.  The first few nights, Larry and I would jump out of bed to make sure he was alive, only to find him sleeping peacefully.  We have either slept with Ari or with a monitor, getting up multiple times a night, since he came home from the NICU.  The few nights he has had difficulties since getting the bed, there was room for us to sleep with him... comfortably.

Ari loves his new bed!

So... January came around and it was time for Ari to have the follow up esophagram and scope.  We were so nervous for him.  Not Ari... look at that brave face!

The scope was quicker than we expected.  Both doctors came in to talk to us, shaking their heads in disbelief.  Ari's esophagus not only looked better, it actually looked good.  It was back to normal (well, normal for him) and there was no sign of the dead-looking organ from December.  It was nothing short of miraculous.  Believe it or not, we credit it all to the bed.  Ari does not instinctively swallow in his sleep.  The incline has allowed his saliva to drain and puts reflux at bay.  Rick's generosity literally changed Ari's life.  He's eating almost everything now and... drumroll please... has started pre-school!!  I'm going to enjoy this period of time while it lasts.  Though we've had some minor issues, his Mitrofanoff has been easy to cath, he's eating, drinking, socializing, going to school and overall, just a really great kid who appreciates all of the little things in life like circle time and playing outside.

Liv was given the clearance to return to cheer and didn't lose any of her tumbling skills.  She's working hard to regain her strength and flexibility and hopes to be back in peak condition for try-outs in May.

I PROMISE not to let so much time pass between blog posts.  In the meantime, if you're on Facebook, please follow Roar Little Lion- Ari Shumbres Update.  It's easier to post quick updates there from my cell phone.

Check out the decorations from our friends The Duncans and The McWhorters for

Ari's 5th birthday on January 25th!  Friend LOVE!!!  

 

Low

Well, it happened...

I hit bottom... that point where everything becomes overwhelming and the lack of control is suffocating.  Quite frankly, I didn't think it existed. We were strong- right?  We've done this so many times before.  

It started with Ari's terrors in the hospital and the memory it burned in our minds.  Next was catheterizing him at home, which we thought would be easy.  Instead, he fought like his life depended on it.  Liv would join Larry in pinning Ari down, trying to offer her brother comforting words and the promise of a lollipop from the secret stash she keeps just for him.  I hated this for her more than anything, but we needed the help.

I was nervous about threading the catheter through the new hole in his bellybutton and actually getting it into right place in his bladder.  Compound that with the epic fight he was giving us and it was a recipe for disaster.  I repeatedly hit his bladder neck- the point where the bladder narrows into the urethra.  Ari would scream in pain yelling "You hit my booty!".  Contact with the bladder neck is unnerving- the pain shoots into the lowest part of the spine.  I even pierced the new channel once,  causing blood to back up out of his belly button. 

When Larry was at work, I had to call my girlfriends to come over and hold him down.  I am so grateful for their help, but I was sinking fast and they saw it coming.  One of my closest friends commented that she had rarely seen me cry, yet she witnessed tears multiple times during these first few days.  Over and over again, friends commented that they have never seen me down and they were concerned.  This just confirmed to me that they were witnessing my fall.

I felt like "MOM FAIL" was written across my chest like a scarlet letter for everyone to see.  I cared for Ari's colostomy, cutting holes in the tiny wafer to perfectly match 2 stomas.  I managed his spit fistula  (his esophagus pulled out the left side of his neck) with ease.  G-tube feeds were a breeze, as was reinserting a new g-tube button into his abdomen when his current one became faulty.  I continue to manage his cecostomy (the button in his intestines) and administer an hour-long flush through it daily.  I've dealt with 5 years of choking, never losing my composure.  Why couldn't I do this?

It was a Saturday morning when this realization hit me.  A friend was having an adult-only afternoon football party and Larry was getting ready to go.  He offered to come back in an hour so I could go see my friends, but I didn't want to. Red lights and sirens should have gone off.  Me not wanting to see my friends?  On a Saturday?  I couldn't leave Ari.  It was the same feeling I had when Liv was a nursing newborn.  She needed me then, just as he needs me now.  Every 1-2 hours, this child needed me to survive.  The weight of this responsibility was surprising... and sad.  

"Don't you see?!?" I yelled at Larry.  "We are not the same family we were 2 weeks ago.  Everything is different and I am failing at my only job."  "Do you want to know the craziest part of all?" I continued through my tears. "I CAN'T give up because he needs me to do this.  The more I try, the more traumatized he gets and I have to keep doing it.  I'm failing.  I'm hurting my child.  I'm done.  There's nothing more in me... Done."

So... that's what the bottom sounds like.  Not so pretty- huh?

Larry said all the right things, but the problem is, we were in the same, sinking boat.  Do you remember our rule about only one of us feeling defeated at a time?  We broke that rule and it's a recipe for disaster. 

Everyone tells us how strong we are, but the truth is, we all have a breaking point.  The true test of character is how we chose to navigate the climb back up.

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Since this point three weeks ago, catheterizations have gotten easier, which we knew would eventually happen.  It helps that Ari has been singing and dancing nonstop and that his focus on "Southern chivalry" is absolutely adorable.  Who wouldn't love their son opening a car door for them or using the term "ladies first" every chance he gets?

And then there's Liv... She is enjoying her competitive cheer team more than ever, and I admire her dedication and focus as an athlete. As I watched her do a unique series of stunts over and over again during a recent fly class, I asked why she chose to work on those stunts, in that specific order.  She told me, "We have a bunch of stunt groups do this series in our competition routine.  I'm not in a group because I'm tumbling.  In case one of the fliers gets hurt like I did last year, I want to be able to step in and prove to my coach that I can do it right away, so I'm practicing now."

Once again, I was humbled by the words of a child... this time my own.  It's time for me to look ahead and get prepared for the what-ifs in my own life.  For the past month, I've been focused on surviving each day, but now I'm moving forward...and up... thanks to the lesson my 8 year old taught me.

Care to join me on the climb?

Ari dressed as the superhero Sportacus from Lazy Town for Halloween.
It was a VERY homemade costume, But he loved it!