Friday, August 10, 2018

...but God


"Jesus looked at them and said, "With man this is impossible, but with God all things are possible."
Matthew 19:26

Two months have passed since my last blog post.  Two months of provisions, results, gratitude, fear, anxiety, hopelessness, and tears.  How can all of those things co-exist?  Easy...

This all began back in January of this year with Caed's Nebraska team concerned with his lack of growth.  It is a very common need in Short Gut kids, so they encouraged us to get an appointment with a Pedi Endocrinologist as soon as possible.  That first step seemed "simple" enough.  (insert laughter)  Getting appointments with specialists, particularly when there is only one Pedi Endo team in the Lubbock area was...a battle in itself.  We felt "time" was our biggest enemy, so booking an appointment 3 months out was so disheartening.  From that point on, it seemed as though each and every step was not just an uphill journey, but rather a steep vertical climb that continually tested our endurance and belief that we would ever make it to the top.

For the past 2 months, insurance has continued to deny coverage for Caed's growth hormone shots.  "Short Gut is not an indication for the need for growth hormone therapy."  I wanted to scream!  And on more than one occasion, I had to apologize to the innocent drug rep for simply delivering a message.  I knew it wasn't their fault.  Yet I vented to them often!  "How can just being short stature warrant coverage, but when you've tragically lost 90% of your GUT and suffer from malabsorption...sorry, we can't help you!?" I was angry! SO very angry!

Maybe it seems silly in comparison to other major (life-threatening) issues Caed has gone through or others are currently fighting. Yes.  In many ways, it seems so.  It's "just growth."  Otherwise Caed is healthy and home and acting as any other normal 15 year old boy.  I knew there were worse things.  We've lived through so many of them. But...this time it was different.  This new issue was affecting him emotionally. We saw the change in Caed about a year ago.  His personality changed.  Instead of seeing a confident, energetic, funny kid...we began to see him withdraw.  The gap between he and his friends (physically) was widening by the day.  He knew....and it hurt.

A week ago we were told "the door had been officially closed with the drug company, " who had been working with us this summer while we waited for insurance to make their final decision.  Several appeals had been made, but to no avail. Caed had been graciously given 7 weeks of free shots this summer, roughly 42 pokes he's endured.  We have been so grateful!  And.....drumroll please.....he has grown 1/2 inch in the past 8 weeks!  :) May seem like a rather insignificant number, but it is HUGE to us!  You would have thought I told Caed he grew 5 INCHES this summer....the way he held up his head and chest and confidently walked away.  ANY growth means more to him than any of us know. Oh, how he has struggled!

Caed's next endocrinology appointment is this coming Tuesday.  What was supposed to just be a "3 month growth check," would turn into a PLEA from Todd and I to our doctor.  "Is there anything else you can do?  Any other avenue we haven't tried yet?  Please help us get coverage!"  This doctor would be our last hope.  I had already told myself that until she said the words NO...I would continue to have hope.  Yet, having heard that word over and over this summer, my faith was small, so so small. I knew in my heart that if this door completely closed, God was still in control.  Even though I couldn't wrap my brain around WHY in the world He would allow Caed to get 7 weeks of therapy started, only to be ultimately denied.  What would have been the purpose, Lord?

Caed has been amazing with his shots this summer!  Throughout his life, I have always been the one to do the hard stuff, the pain-filled necessities that he has needed (medically). Not anymore.  Our little boy has sure grown up.  I never once had to remind him to do his shot.  Every night he would gather up all he needed and administer his shot to himself (alternating between both legs and arms).  This kid is so used to be sticked and poked and prodded. Needles don't faze him in the least, but I was more impressed with the responsibility he took to do it all himself.  I knew the reason.  These shots were not just normal shots to him.  With every needle stick, it represented HOPE to a kid who is not just suffering physically, but more importantly, emotionally.

We've discussed in length with Caed that these shots aren't magic.  He isn't going to turn into the Hulk overnight...or ever!  These shots will help get him to where he should be genetically.  We have told him if he wants to build muscle and definition however, it's going to be totally up to him!  The past week we have seen a more mature, self-driven side of Caed than we have ever seen before.  He gets up early, eats breakfast, then has begun a pretty tough workout regimen (Insanity) in our garage.  Todd has been able to be his personal trainer and teach him techniques, etc...  Even when his dad is working, he still continues to get up every morning and push himself, alone.  He's a tough kid!  Outwardly he may not look it, but internally he is SO VERY strong.

We have watched Caed work...hard!  Yet my heart has wanted to fall apart.  I knew what was on the horizon.  No more shots!  How would we break the news to him?  Would he understand and believe that God still had him in the palm of his hand, and obviously had a "better plan?" Could we trust that God might be telling us "he doesn't need the shots...I'm going to help him grow MYSELF!"  Yes!  I knew I could trust God, period.  I have seen him move mountains for Caed the past 10 years.  I knew in my heart that everything would be ok....even though we couldn't see it.

My heart has been trusting God the past few weeks, not for the "YES, " but rather for the "NO."

...this morning my phone rang and it was the Endo dr.  My heart stopped briefly when I saw the number, yet told myself, "they're just calling to confirm our appointment on Tues."  (sigh...)

The nurse quickly said, "Hi, Lori, just wanted to let you know your insurance has approved the shots!" I sat silent and stunned.  I didn't understand.  Just last week I had several conversations with our case manager (as well as the denial letter that came in the mail) which all said "It's over.  Caed's case has been closed!" HOW?  WHY?  The nurse simply said "there was some miscommunication, but we got it all worked out."

I hung up the phone as my hands continued to shake.  Just this morning, Caed had "informed me" that he only had 6 days of shots left.  My heart sank.  I sat down and tried to explain to him that we didn't have anymore because insurance wouldn't cover it...and how we didn't have an extra $2000 a MONTH to pay for them ourselves.  I tried to encourage him that Dad and I would talk to his doctor and see if she could try something else with the insurance company.

One hour.  Just 60 minutes later God would show up BIG in our home today!  He would remind us that there are going to be times that by human standards we would be backed into a corner with no way out.  There would be absolutely nothing we, nor any doctor or case manger could do.  He would put us in a position in which we had no other choice than to just HOLD FAST, not to our prayers getting answered the way we wanted, but rather just to HIM. Plain and simple.

I have cried a lot this morning.  Tears of joy, yes!  But rather tears of just...God being God.  On Monday I posted something on Facebook that the Lord was showing me.  It wasn't easy.  In fact, it was down right HARD! When things around us seemed to be falling apart one right after another (trust me, we had a ((TOUGH)) week in many different areas in our family, not just Caed), I kept hearing from the Lord, through various people, the same message....

"Want ME!  Not just the things I can do for you!  Stop worrying about them.  Slow down and just SIT in my presence!  I can do exceedingly MORE than you can possibly imagine.  It just may not be done in the way you think.  Trust me."

I can honestly say that even though all the issues I had been worried about this week were still very present, I had peace.  Not because I knew God would "fix" everything, but rather...just began focusing on Him, alone.  Wow!  Is there ever tremendous POWER in that!

"And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus."  Philippians 4:7

Thank you God for not just answering some of our prayers this week, but more importantly in HOW you did so.  It wasn't easy.  It hurt.  Yet in your infinite wisdom you knew...we needed a reminder of your POWER and SOVEREIGNTY.  You knew you needed to get us to a place in which we had reached a 'dead end.' You had the events and tiniest of details of this summer planned out impeccably.     Once again, with joy (and a little laughter), we can sit back and reflect on the past 8 months and see how it was perfect.  I don't believe you simply "intervened" into a hopeless situation, but rather...you were there in every detail, in every step of the way.  Your faithfulness has been abundantly evident in Caed's journey his ENTIRE life, yes even in the womb as you carefully and lovingly twisted his body into knots... You had a plan for his life!  Yes, there would be pain and fear and sorrow.  Lots of it!  But you knew.  You knew the magnitude of Caed's journey would impact so many people's lives.  Jesus would be made famous and you would continually show us just HOW MUCH you love us.  We have been face-down in the pit of Caed's journey so many times.  We could have never imagined all the twists and turns to this plot.  You are the author and YOU are so good!  Yes, with every tear shed, YOU have been good.  With every "no, " YOU have been good.  Every time we cried out to you and no answer would come, YOU have been good.  This journey has been long.  This journey has not ended.  In days ahead, more pain will come.  Yet, YOU will forever and always be our GOOD LOVING AND FAITHFUL FATHER.

Wednesday, June 6, 2018

Waiting on Pins and Needles




The last time Caed needed a medical backpack, the year was 2009.  It held his feedings/pump during a time when he needed 24 hr. enteral feeding via G-tube. This little blue backpack sits on a shelf up in our closet.  To see it, brings both smiles and tears.

Today,  the UPS man delivered a box to our door, and when I opened it, my heart stopped for a few brief seconds.  Not sure I was prepared to see another backpack!  The rest of the medical supplies packed inside honestly triggered nothing in me, but it was like deja vu staring at that bag.

Yet another chapter of Caed's medical journey will soon begin...

He has always been small, and of course Todd and I are neither one expecting any of our kids to be 6 ft. giants.  However, Caed has always been the one that has barely hung on the growth chart for years.   Finally this year, with him falling OFF of it, his doctors grew concerned.  Nebraska wanted us to go see a Pedi Endocrinologist.  This has not been our first rodeo with an Endo Dr.  We saw one in Dallas when Caed was 5 or 6.  At that time, they felt like he was growing well (considering...he was also being supplemented with tube feeds), and saw no need for any help such as growth hormone therapy, which most Short Gut kids need.

Now fast forward almost 10 years, and things have changed.  He has undergone several tests and the doctor feels he desperately needs help in growing.  Almost every Short Gut parent I have talked to (either in person or via FB support groups) have been shocked that we haven't needed growth hormones before now.  Most all of these kids need it due to the fact they are missing the majority of their bowel and cannot absorb nutrients the way normal people do.  Malabsorption has been our unwanted, evil houseguest for 10 years!  People are shocked when they are around Caed very long and see just how much that child eats!  "Where does he put it?" they ask.  ha!  I won't go there....  Let's just say 'what goes in, typically goes straight out!'

We have been on this new journey (concern for lack of growth) for most of the year.  We have seen changes in Caed.  Ones that have secretly bothered us.  Caed is different.  Sure, we still see that crazy, funny side to his personality when he's around those he trusts, but not as much anymore at school.  He seems more withdrawn and has struggled greatly with confidence.  (anyone who has ever known Caed, knows he has always had more than his share of confidence!)  :)

Things have occurred this year.  Awful things have been said/done to him either unintentionally by friends, etc....or intentionally from strangers.  Mama Bear has had to restrain herself on more than one occasion.  Some of it is just part of growing up.  But...my sensitive heart wanted so badly to shield him from hurtful comments regarding his size.  People (typically) watch their words with someone who is overweight.  Yet, I've found that no filters are in place when someone is underweight. Those who desperately want to GAIN weight, but can't.  Commenting to them about how small they are only deepens and twists the knife that is already stabbed into their hurting heart.  And no, "just eat more!" is not the answer.  At least not with someone who has lost the majority of their intestines.  Pain and frequent trips to the restroom will most definitely occur, but thanks for your "expert weight gaining tips." Lol  Caed's doctors always used to laugh and tell him "Hey, look on the bright side (of SBS)...you'll NEVER have to go on a diet!"  It's true, and we are thankful for that.  I'm betting as a girl, that would be the best news ever.  For a teenage BOY...not so much right now.

There are still a few hurdles to jump over and we are praying (no pleading!) with God for a full green light.  Yet not forgetting all the ways He has got us to where we are sitting today.  We continue to wait (almost literally) on pins and needles, as well as pray for his body to absorb the hormones.  We honestly have no idea how well it will work or how much time his body has before his growth plates close.

This decision has not been made lightly.  I was terrified in the beginning.  Yet...the alternative (stop growing altogether) scared me more.  We didn't want to do anything that would cause him more harm.  Peace is now overflowing, and we are thankful for doctors who not only stay on top of his health (even though we are 1000 miles away)...but also just love our boy and want what's best for him.

So we wait.  Patiently, expectantly, and full of hope.

"He who began a good (miraculous) work in you, Caed, will bring it to completion at the day of Jesus Christ."





Thursday, March 1, 2018

10 Year Anniversary


It's March 1, 2018.  As I stare at the date, my mind instantly is overwhelmed.  Has it really been that long?  Caed is 14 1/2 years old today.  This afternoon you will find him sprinting and jumping in this year's first track meet of the season.  His coach called him the "Flying Squirrel" last year.  He's fast... and can fly.  Not only does he have 3 short months left as an 8th grader at Idalou Middle School,  more surprisingly...he will be in HIGH SCHOOL next fall!

Caed was 4 1/2 years old when his life instantly changed on March 1, 2008.  Trauma struck his body that day, as his surgeon shook her head in disbelief that he had survived it all.  Todd and I,  of course,  found ourselves sitting in the PICU in paralyzing shock over what had just transpired.

To reflect back over the past 10 years and everything this child (and our family) has endured is bittersweet.  On one hand, flashes of the most painful months/years of my life can literally suck the breath out of me.  Yet, to look back...also forces us to see where we are today.  For those that walked (no, belly-crawled) this journey with us from day 1 are possibly as speechless as I am finding myself now.   Are we really here?  Did we honestly survive that horrific nightmare?

The days were long.  The nights were even longer.  The separation of our family was almost too much to bear at times.  All we were....was instantly gone!  To adequately summarize the past 10 years of Caed's health is rather daunting; however, these numbers help put in perspective the magnitude of our miracle:

4 - years old when Caed's midgut volvulus surfaced
19 - days I had with my newborn son before "losing him" for 9 months
4 - days on the ventilator
10 - days spent in PICU
8 - surgeries
90 - percent of small bowel lost
40 - percent of colon lost
4 - blood transfusions
1 - NG tube
3 - catheters
23 - times under full anesthesia
15 - Upper and/or Lower GI's
7 - endoscopies
3 - CT scans
1- ECG
1- J tube
3- nasal feeding tubes
6 - G-tubes
5 - intestinal drains
12 - adverse drug reactions
7 - hospital rooms
73 - consecutive days spent at Covenant Children's Hospital in 2008
117 - days before Caed or I stepped foot back in our home (weekend visit only)
158 - consecutive days of vomiting up to 8-10 times/daily
9 - trips to the ER
164 - days on TPN
1 - Home Health nurse
2 - staph infections in his central line
4 - play therapy sessions for Post Traumatic Stress
84 - consecutive days living in Omaha, NE for Intestinal Rehabilitation
260 - days with a central line
44 - flights Todd took back and forth from Dallas to Lubbock to Omaha
278 - consecutive days away from our home in Celina
283 - consecutive days our family of 5 was separated
25+  - doctors caring for Caed
3 - times with c-diff
437 - days Caed wore an enteral feeding backpack
7 - more trips back to University of Nebraska Medical Center in Omaha
10 - weeks on antibiotic therapy for bacterial overgrowth
1- unbelievable Make-A-Wish trip
1 - hiatal hernia
1- ultrasound
1 - gallbladder removal
3 - incision revision surgeries
4 - bowel preps
13 - weeks burning his incision with Silver Nitrate
2 - open surgical wounds which had to be packed for 6 weeks
365 - days Caed's gallbladder/incision issue lasted
541 - days Caed was not allowed to swim or take a bath
1, 520 - approximate days Caed had a feeding tube
4 - bone scans
1 - ambulance ride to ER
150 - dollars Caed collected in his "penny bank" for his smiles
1,000 - dollars for 1 month supply of Caed's enteral formula
865, 000 - dollars of largest single medical bill
2,000,000 - dollars in total medical charges thus far...
600 - blog posts...and counting
1 - amazing MIRACLE who was chosen to walk an incredibly tough journey
10 - years the Lord has shown His Faithfulness in our new world of Short Bowel Syndrome

countless..... - abdominal x-rays
countless..... - syringes and other medical supplies used on a daily basis
countless... - vials of blood drawn over the past 10 years
countless..... -nurses who loved Caed deeply
countless..... - cries and screams in agony from Caed
countless..... - times Caed asked "When will I be normal again?"
countless..... - times Todd and I cried out to God to heal our son!
countless..... - tears shed from all who followed Caed's story
countless..... - family and friends who met tangible needs
countless..... - prayers, cards, gifts, visits (from strangers around the globe) which BLESSED us!
countless..... - ways God has and continues to show His Faithfulness...

"Your eyes saw my unformed body; all the days ordained for me were written in Your book before one of them came to be."  Psalm 139:16

God continues to be so so good to Caed.  Not only has healing taken place in his physical body, but more importantly, the Lord has "healed" Caed's heart too!  More on that story later...

Currently, we are waiting to hear back from our endocrinologist.  Nebraska has been concerned with Caed's lack of growth (which is obviously very normal in Short Gut patients).  If he has a delayed bone age, that's a great sign!  He still has plenty more time to grow.  If, however, his bones measure that of a 14 year old....he is running out of time.  The doctor has a plan of action if that is the case, and we have felt nothing but peace after meeting her and discussing Caed's history.  Definitely an answer to prayer!

God's faithfulness continues.....