Friday, August 31, 2012

A Couple Who Can Relate

I just hung up with an amazing, new friend, Tiffany.  She is currently walking the same dark road with her husband, Kyle, that Ryan and I have been on.

Tiffany's husband, Kyle, is severely ill.  He has been hospitalized for 24 days due to a severe Ulcerative Colitis flare up coupled with a highly infectious stomach bacteria he randomly contracted called cedis.  The two issues have to be treated separately which makes it very difficult and time-consuming. Though UC is unlike Crohn's in several ways, they are distant "cousins", if you will, so you will have a general understanding of it.

They are in nearly an identical situation to us.  Both young, both caught totally off guard by violent digestive illness, and married just a very short time before a health crisis rocked their lives.  

Kyle stands at the same height as Ryan, 6'1" and he has dropped down to 132 lbs.  That is extremely and dangerously underweight and he is just so sick!   Can you even believe what Crohn's and Ulcerative Colitis can do to person?!  I am still in shock that the digestive tract can get so messed up.

Everything about our situations are just a mirror image; from our husbands being on TPN (intravenous nutrition), to stories about doctor's not admitting our husband soon enough, to even just the daily struggles of being a wife/caregiver.  It was quite weird actually and we had a good laugh about it.

We were connected through a mutual friend who wrote on Tiffany's Facebook wall yesterday sharing with her about our new blog Reaching For Fringe.  She has been reading our story and we decided to connect via the phone.  I'm so grateful for Facebook and blogs this evening.  So although I've known about their situation for just a few hours, the 4 of us are bonding already over our unique situation and grateful for someone to look to for support.  Right before we hung up tonight Tiffany said, "You two are the first people we know who are just as young as us and facing such a serious health problem.  It's comforting."  Amen lady!

I would like to boldly ask all of you to pray for and cover Kyle & Tiffany all the way from Colorado to the west coast with petitions on their behalf.  Please take a moment to lift up these requests:  rest for them both, that Kyle would be released tomorrow as planned, that Tiffany would remain courageous and brave, for adjustment as they might head home, for grace in their marriage, strength in their hearts, and a renewed trust in the Lord's plans and provision.  They love Jesus desperately and have continued to cling to him.

Young couple's in a health crisis are desperate for prayers and a covering of the Holy Spirit.  Thank you thank you!!

We Can't Get Enough Doctors!

Apparently The Deckers cannot get enough of the doctor's office.

It way MY turn yesterday to head in for a visit.  In the last few weeks and particularly the last few days I have been experiencing what seems to be issues with my heart: heart palpitations, achiness in my left armpit and middle chest, left shoulder blade discomfort, fluttering in my heart, and an overall pressure in the left chest area. 

The frequency and symptoms have become much more noticeable which is what sent me in although I have experienced this type of symptom (though rarely) long before this.  I can think of a time about a year ago where I though to myself, "I don't think I should be noticing my heart, but I do...".  And even though I had cut out my one cup of daily coffee all last week and I was still experiencing symptoms.

Onward to the doctor's I headed.  I was hooked up to an EKG machine with sticky monitors all over my legs, chest, and sides.  The results were normal!  However my doctor said that should still like for me to be trained in a Home Heart Monitor which stays hooked to me 24/7 for about 3 days.  I take it home and go about my normal life with it on.

Here is my "extremely educated and medically relevant" hypothesis: I think the last 5 months might be catching up with me and I would attribute the heart complaints to anxiety and stress.  Though admittedly, stress so severe that you begin to feel it in your heart is terrifying to me!!  But my doctor is not so convinced about the anxiety guess, especially because these symptoms have happened outside of the Crohn's epidemic, so we'll defer to her expertise and follow what she says.

So we PROMISE to keep you updated whether good news or bad comes.  My goals moving forward are to relax, avoid caffeine, and monitor all symptoms very closely.  I have to say though, if we jump from Crohn' to heart issues, I will be a little more than ticked off...

Enjoy the weekend friends and we'll post again soon!

Tuesday, August 28, 2012

Remicade and Accidental Laxatives

We had Remicade Round #2 this morning/afternoon and it went perfectly.  The transfusion took about 2.5 hours this time which we are pleased with.  Shorter doctor's visits are always a welcome change!

We generally bring the iPad to appointments with us to pass the time, and today we enjoyed our new favorite show: NY Med.  It is a real life look into an ER at Weill-Cornell Hospital right in the heart of New York City.  No drama with the character's just a really intense and accurate look into various medical cases.  Of course as Remicade appointments require, we made a short visit to Chick-Fil-A to indulge in that deliciousness :)

Also, Ryan is up to 154 lbs at this point!  That is 6 lbs gained in the last 15 days which we are thrilled about.  He has been strapping 2 lb ankle weights on this legs when we take short walks around the block and doing light arm curls.  It's our goal to have healthy weight gain in both muscle and fat, not just all milkshake jiggle :)  Overall he still requires daily naps and is very slowly retraining to sit for long periods of time.  But progress is progress!

Finally, as the title of the blog suggests, one of us *ahem* accidentally took a laxative last night.  How is that possible you might ask?  Well it simply seems that I can never be problem free when it comes to these dang Remicade appointments.  Last time my ovaries got all kinds of angry and were trying to take over the world and this time my insides was very "active" to say the least...  

As I was making us tea last night I grabbed a box of peppermint for me and ginger for Ryan.  It was delicious!  Until I woke up this morning with major stomach cramping and thought I had food poisoning!  I don't know what inspired me, but I re-looked at the tea box and realized I took Peppermint- Smooth Move.  Curses!!  It kept me on my toes as we were trying to get out the door and at the doctor's appointment which was a real treat for all in the office.  I've certainly "moved smoother" you dang box.  But all is well now for you concerned individuals interested in my awoken bowels.  

Wow, I'm glad we had this talk.

Back to more relevant information...Ryan is super, super sleepy after his Remicade this time.  He just ate a big turkey, swiss, avocado sandwich and promptly went right to bed.  Praying that he keeps making progress and that this second round of drugs will just mobilize and strengthen him all the more!

P.S.  A shout out to my AMAZING mom who came to our house while we were at the doctor's today and cleaned our whole house top to bottom.  It is such a blessing to walk int he door to calm and clean. Thank you mama!

Monday, August 27, 2012

Run Away Spouse Syndrome

"Wow you've stayed through all this!  Amazing!"

"I commend you for not leaving during this time."

"We've seen a lot of spouses leave so it's refreshing to see that you're still here!"

Lately, I am really zeroing in on this phenomenon that people express a type of genuine surprise when they find out the difficulties of Ryan's health battle...and that I stayed.

Does this strike anyone else as totally disturbing?

Shouldn't we as individuals and as a culture be surprised when spouses leave?!  Not when they stay!

 I felt my wifely pride puff up a bit the first time a hospital staff congratulated me on my bravery for not abandoning my husband.  Then the next comment from someone came about surprise that a 23 year old would stick with her sick husband, and that furrowed my brow a bit.  But when the comments became more regular I think I got just down right pissed!

Who on this Earth leaves their spouse and abandons their marriage when the sickness, the poverty, the worst comes up?  Shame on them.

I just can't sugar coat this topic; understanding the motives or excuses of a run away spouse is incomprehensible to me.  It's not acceptable.

Picturing my husband consumed with pain and all alone, stumbling to the bathroom in the middle of the night... breaks my heart.
Thinking about him in all those offices, through all those exams, experiencing unthinkable pain...breaks my heart.
Packing my bags and not looking back while Ryan is ill, bed bound, broken, unstable, scared, confused...breaks my heart.

That he would be abandoned for not being perfect...breaks my heart.

There have been so many times in the last 5 months where Ryan couldn't have done it alone.  He needed his wife, his friend, his help meet in the pain and emotional turmoil.  I have served as his driver, his cook, his comfort, his advocate, and his unofficial nurse.  And it is not even that he NEEDED me for those things, it's that he should EXPECT those things of me.  And I of him.

I am not going anywhere husband, although I think you already knew that.  I am up for the midnight bathroom runs, the random ER visits, and the next scary surgeries and all the doctor's visits for years to come.  I am here for the difficult, for the hard, for the unpleasant, for the scary.  

Because you and I are one flesh completely inseparable.  We are not designed to do this, or any other thing in life, alone.  I know and accept that this season of unbearable might be here for awhile.  But I look with anticipation to the days of joyful, beautiful, adventurous, and healthy.  If I can't stick around for the hard, then I don't deserve you in the ease.

The Run Away Spouse Syndrome just won't do.  I just won't accept it from anyone else or from our culture.  I don't want to hear shenanigans from people congratulating me about being a good spouse for staying.  It's not heroic to stay committed to something you said you will do.   It's simply your covenant bond of marriage manifesting for God's glory and as a testament to Christ's love. 

Jesus stayed committed through our worst, and it's any spouse's goal to follow in his lead.  The Run Away Spouse Syndrome just won't cut it, because we don't serve a Run Away God...and He is the one who WILL root you firmly right where you are meant to be.

Friday, August 24, 2012

The Misadventures of an Ileostomy

So here is the deal:  Apparently the Deckers really know how to go big or go home when we get sick.  Ryan is the expert it seems with his crazy Crohn's :)  His fifth and latest surgery is the BEST and so amazingly cool and we are ready to share if you are ready to read...

Dr. B, our favorite colorectal surgeon gave Ryan what is called an Ileostomy on July 30th.  I did not know that word at ALL when it was first introduced to us, so indulge me for 10 seconds while I try to quickly and clearly explain it.

An ileostomy is an opening in your belly wall that is made during surgery.  Ileostomies are used to deliver waste out of the body and into a specially designed pouch when the colon or rectum is not working properly.  The opening where waste secretes is called the stoma; it is generally bright red, round, and about an inch or so in size.  Ileum refers to the last part of the small intestine which is where the bag connects to the stoma.  Crystal clear, right? 


It is insanely awesome in my opinion but honestly freaked Ryan out a bit at first, which is normal and OK!  Now he is a stud with it.  With an Ileostomy, his colon is simply being bypassed though the large intestine tissue remains alive and simply "goes to sleep" while it's not being used.  So that he can still use the bathroom we apply a two piece medical supply to it that let him function normally.  There is an appliance that fits directly to over the stoma and to the abdominal skin and then you clip on a pouch or bag.  You simply drain it from a re-closeable opening at the bottom as needed and it is very hygienic!  We change his ileostomy appliance and bag every 3-5 days.  The dang medical industry is so legit!  This pouch set looks very much like what Ryan wears 24 hours a day:



An Ileostomy is not gross, noticeable, smelly, limiting, or weird.  It had given Ryan life, taken away the pain of bowel movements, he will be able to resume ALL normal activities (even swimming), and it is a fabulous invention.  Truth be told, if this kind of medical therapy was not available and we lived about 100 years ago Ryan probably would not be thriving or even living because of infection or some other complication of his VERY severe Crohn's Disease.

This picture below is NOT Ryan but is an excellent resource for more information if you would like to read about ostomies and this patient's journey.  This is an excellent, non-graphic, and real-life picture of a healthy stoma and looks nearly identical to Ryan's when there is no bag attached:

What you should know about my particular Ostomate (Ryan calls himself a Osto-stud):
1. Refrain from jokes unless given permission.  It will not be funny, I promise.
2. Act normally with him: hug him, touch him, love him!
3. Ask questions.  We are very open and if you're lucky Ryan will probably flash you his pouch :)
4. Share your own experience or talk about people you know with ostomies.
5.  This is a journey for us too so we are learning about what he can/cannot do just yet
6. Sometimes Ryan is sensitive about it, sometimes he is confident about it.  We just ask for grace.
7. His diet is only restrictive from hard, sharp, or highly fibrous foods
8.  He is the same, amazing Ryan Decker...just with a new, fancy appendage!

Do you have any questions?  We would love to hear them!  I tried to pick out non-graphic pictures but I'm not sure if these images clearly explain the procedure.  There is so much more to an Ilesotomy than when I can write here but to keep it (fairly) short, this is a good starter point.  Thanks for letting us share with you and we look forward to sharing more of the journey together!

Thursday, August 23, 2012

Exceptional Day!

Ryan John Decker had an exceptionally good day today!  I'm not used to posting about good health or positive steps so I'm overjoyed to brag about him to you!

His doctor gave us instructions to leave the house for "a 1 hour daily adventure" to get Ryan retrained in standing, sitting, and exerting energy.  He just isn't used to it that type of very normal and everyday activity.  After 5 months of being bed/couch bound his body is completely atrophied and out of practice for anything that takes energy or coordination.

So today we went to my favorite coffee shop and he sat on a regular chair (no padding!) for almost 1 full hour.  Seriously, hallelujah and praise Jesus for that!!  We had a little breakfast there and spent some time with the Lord together.  It brought more life and joy to me to see him acting "normal".  My favorite chunk of time together when we processed this verse together:

Many are the afflictions of the righteous,
     but the Lord delivers him out of them all.

Psalm 34:19

Heavy, right?  And who are the "righteous" anyway?  Romans 3:22 points out that anyone who has accepted Jesus into their lives and heart and believe in Him are considered among the righteous.  So don't get any crazy ideas about Christianity being easy because Psalm 34 (and many other verses) disproves that warped idea right away!  Sounds to us, like those who follow radical, beautiful Jesus will experience hardship.  And thankfully God will rescue us out of it.  Though the timing is always unsure and that is what trips me up... ;)

But wait... that isn't all friends!  He also took a walk today, ate about 2500 calories, and has been a stud all day.  He was in very high spirits today and I just loved seeing him like that.

Although I really like writing this to you, I am also hesitant to give you the wrong impression that he is  fully well.   The poor guy is still at 148 lbs.  His lowest weight was 144 lbs when he has in the hospital but I would like to see him in the 150's by next week.  He is still very far from where he was 5 months ago: running 13 miles, lifting significant weight, sitting for a 8 hour work shift, completing house projects, etc.  So he is not out of the woods and requires more of our petitions, prayers and love!

And for anyone interested, in my next post Ryan has decided he is comfortable and ready to share with you prayer warriors and sweet support about his last surgery and the details.  It was his most intense, invasive, and serious surgery yet.  It's important to him that he is open about his journey to help others who have or will find themselves on a similar path someday.  He is extremely brave to share his life and health struggles with so many!

Praising the Lord tonight for this excellent day!  He is faithful in hard times AND good times.

Tuesday, August 21, 2012

Updates

Slight medical frustrations: This morning at 10:0 am we are at a nurse's appointment for Ryan down at Skyridge Hospital.  We haven't been happy with how his last surgery's recovery and maintenance are going.  We're having some issues with medical supplies working properly and feeling comfortable with what to expect.  I know that is vague but basically we need more training to gain confidence and we know this particular nurse from our hospital stay so she will help us out.

Ryan's Health:  His nights have been very difficult the last few weeks.  He wakes up way very often in pain or something about his last surgery is not working properly.  It takes away sleep from him and that is when his best healing happens.  That's why we're seeing the nurse today.  We are also trying to taper off Percocet but it's difficult because his post-op recovery was just so rough. When he's not on the pain medicines he feels generally ill, pretty sore, and not well.  Our ultimate goal is to get him off pain meds but we have to have lots of grace and patience.  We go back for the second Remicade transfusion next week, August 28th.  The more Remicade the better!  Steps are very, VERY slow but he's not as ill as he was a few months ago so all we can do is be thankful.

Studly husband in his new glasses that Linny and I picked out :)  Very stylish

Brave Husband: I was SO proud of Ryan this weekend.  On Sunday I was in a wedding for our good friends Hannah and Daniel.  One of the best parts of the day was that Ryan came!!  He took several rounds of a higher dose Percocet so that he could he sit through the ceremony and slow danced with me once :)  Truly, he did an amazing job and was so sweet to everyone even though he didn't feel great.  It's a small step but one in the right direction.  Oh and he got new glasses :)

Reaching For Fringe: Hop on over to our blog, Reaching For Fringe to read about God's scandalous purpose in illness.   Here's a sneak peek...

I would take a legitimately hard fight for my faith, marriage and very life over anything else.  That is when I will be made more like Christ.  THAT is what is relevant to God.

Hope you enjoy!  And we'll let you know what the nurse says today.  Glad you are here :)

Friday, August 17, 2012

Crohn's Mullet

Fact:  My husband is handsomer (real word?) WITHOUT a mullet.

Also fact:  My husband is crazy hilarious even when he is sick

This evening we decided that almost 4 inch long hair on him was not snazzy.  So I cut it.  Yes, I cut his hair and no, I am not always very good.  But it's free!

So here is a picture to bless your socks off, because for about 2 minutes, Ryan was gloriously decked out in the finest mullet I've ever seen.  And most of the mullets I have ever had the great "privilege" of witnessing first hand were in Russia so that is saying something.

Do not fret, I then cut off this Crohn's mullet real fast.

MULLET ALERT:

He was obviously very into character with the serious look on his face.  I promise this was HIS idea! 

The real after-handsome, sweet smile, and relaxing :)

Thursday, August 16, 2012

What I'm Tired Of

I love my husband with all my heart and am simply tired FOR him and with him.  Tired that the road to progress is so shifty and difficult; so very unpredictable and not at all smooth.  I am not tired of him, caring for him, or being married to him.  But together we are tired of this...

I am tired of seeing my husband in this position on this couch because he has no other choice...



 

 I am tired of the surgeries, the hospitalizations, the medicinal side effects, or other ailments because it brings him pain and it brings his spirit low...


 

I am tired of insensitive comments (just think before you speak), unplanned complications, weakness, limitations, frustrations, dreams for Ryan being squashed, that Crohn's has stolen SO much of our time, and that my husband is suffering.  I'm tired of all that.

But I'm not tired of my husband.  I love him more than ever.  Talking today, we were both very encouraged to again affirm that neither one of us will ever walk away from this marriage.  We will never leave, give up, or run away.  Where would we go anyway?!

I'm tired of you Crohn's and I'm tired of you satan.  You're both the biggest idiots I've ever met.

We keep praying for health and are excited for the day when Ryan is restored.  It's slow, but we think it's coming.  Show up Jesus--we trust you!

Wednesday, August 15, 2012

SOOO Cold

On Monday after our Remicade appointment we decided to grab some Chick-Fil-A to take the sting out of having to sit in a doctor's office for 3.5 long hours.  We love that place so it was a good post-doc spot.

As we were leaving the office, our nurse went over some standard side effects we should be aware of.  She made a very strong point to say that Remicade patients need to be very cautious and attentive the first day to signs of anaphylactic shock--where your throat closes up and cuts off breathing due to an allergic reaction.  She said it is uncommon but to be aware of the possibility anyway.  And then sent us on our merry way.

So as I said, we went to Chick-Fil-A to grab some goodies.  Ryan ordered a chocolate milk shake, chicken sandwich and fries. 

As we were driving down the highway, mid conversation, Ryan suddenly went quiet.

I eventually looked over to see his mouth semi open and he's grasping his jaw and throat with big eyes!

"RYAN!  RYAN!  Are you ok??  What is happening?"

He still didn't say anything for more several seconds while I'm getting frantic.

FINALLY....

He swallows and grins as he says, "Wow, that milkshake is SOOO cold!  Yum!"

UGH!!!!  Dang husband, DO NOT dramatize an overly huge gulp of freezing milkshake when the nurse just told us how I should be on the look out for your throat closing up. *eye roll of the century*

I snatched that milkshake away from him for the rest of the ride.

P.S. An actual Ryan update today:  He had a good day yesterday with a bit more strength, color in his cheeks and liveliness.  But then we had a harder evening and night.  Just some surgery frustrations, intense tiredness and random swelling/pain. He slept last night and is doing well this morning.  He said he needs a very low key day of naps and rest :)  Good!  It's the best thing for him.  He's using percocet less and less frequently which is excellent news because we want him off that stuff for good.  We are still working hard to get him to gain weight and it looks like his daily milkshakes (as cold as they are) are helping him along with a steady, healthy fat diet.

Another daily goal is to get him out of the house and walking daily.  Some days he is up for it and rocks it out and other days are just tired and weaker.  But we'll take what we can get.  Also, he seems to be responding to the Remicade nicely.  No allergies or side effects.  We go again August 28th for his second transfusion.  Go husband, you are a stud!!

Monday, August 13, 2012

Remicade: 1 Crohn's: 0

Today we went down to Littleton for Ryan to receive his first Remicade transfusion.  It went smoothly and he did wonderfully.


He was hooked up to a standard arm IV and began a regular saline drip to start.  Then our nurse added the Remicade viles one at a time over the course of about 3.5 hours.  Praise the Lord we do not pay this price tag, but this magical drug runs at $1,000 per little glass bottle.  And they administer your dose based on weight: you weigh more, you pay more.  Good night that stuff if pricey!  But it works, so I suppose the medical industry will charge whatever they like.

We brought along the iPad for Ryan to watch TV shows or check his e-mail, and one or twice he dozed.  It was a relaxed visit and went as well as we could have expected.  It did leave him fatigued and with a headache which we're told is normal.

Random facts: Remicade is an immuno-suppressant and is a genetically engineered antibody that blocks inflammation caused by a protein called tumor necrosis factor.  It basically shuts of his immune system, because it wrongly attacks his healthy tissue thus causing a flare up and all the other nasty side effects of Crohn's.  Having no immune system is a little scary, especially with cold/flu coming up soon but we will try to stay healthy around here!

So while Ryan was a rockstar today I was struck with the most heinous case of menstrual cramps (sorry for the TMI) during our entire 3.5 hour visit, so alas I was curled up in a ball on the second chair in the room.  Our nurse finally had mercy on my and "found two motrins in her purse" for me to have.  Blessed drugs, I never thought I would say this, but how we love you.  I'm left feeling totally drained today and so looking forward to health, energy, and restoration.  We'll keep you posted on how he progresses this week.

Studly husband all hooked up in his armchair

Remicade goodies.  We love you, whoever you are, that invented Remicade

Our set up: two big comfy chairs in a room with fancy dimmer lights.  Very relaxing :)

Saturday, August 11, 2012

In Sickness and In Health

I'm learning from this season that one of my favorite things to do is write.  It's an excellent way for me to process as I'm not a verbal processor and need some time and space to write it, delete it, edit it, and get my thoughts in order.  Ryan has been my biggest advocate to write and create which is just incredible of him!

In doing so I wrote my favorite post yet over on my the blog, Reaching For Fringe, titled In Sickness and In Health 

(click that turqoise link!)

That post received a whopping 900 hits in just one day.  It really does reveal the depths of what our vows mean in marriage and what this commitment means; in trial or ease.  Praise the Lord for anyone who takes the time to read my silly thoughts, but I hope it glorifies Him and minsiters to anyone else who might need it.

Check out these other posts at Reaching For Fringe:

A "How To Guide" to the new blog for new readers

Take It Day By Day {Devotional} that could be used for anyone's quiet time, not just those experiencing Chronic Illness

This post is titled So Much Grace and is about going easy on ourselves in stressful times

And finally, Changing Emotions {Devotional} that again can be used in a season of sickness or out!  Check it out if you need a few questions to process in your time with the Lord today

I hope you get to check out the new blog and those particular posts.  It's exciting to meet wives across the country in the same boat, to see the Lord move and be allowed to steward this particular corner of the internet. Hop on over and let me know what you think...

Thursday, August 9, 2012

Doctor's and Appointments

Today we had a day full of appointments and doctors.  We left our house around noon and didn't get back until 5.  That is Day 2 of crazy medical runs.  The day before that we drove down the hospital picked up a new prescription and had to have some blood work done as well.  Then obviously today was packed too.  Those kinds of days are way too long for us at the moment, but they had to be done.

Our first appointment was with Dr. B, the colorectal surgeon.  He took a peek at Ryan and said that things look as good as they should as Ryan is still technically an untreated Crohn's patient.  Everything we've done at this point-surgeries, hospital stays etc have been to treat the side effects-not the actual Crohn's.  It feels impossible to keep playing catch up with such aggressive, mean symptoms and we're glad to FINALLY be treating the Crohn's.  Not sure why this didn't happen sooner...ugh.

Dr. B will not remove the cetons (the rubber bands keeping Ryan's fistula open) just yet but in September we have a chance at getting them out.  Ryan was also having another tender pain in the perineum area a few days ago which discouraged us big time and made us think abscess.  And another one of those means another surgery.  But Dr. B thinks it's just the cetons kind of poking around irritating the skin.  Nothing you can do about it really.

Ryan is down another 5 lbs which puts him at his all time low-144 lbs.  That pretty much was the cherry on top of the cake.  Dr. B was not worried however because Ryan did just have major surgery 9 days ago and his body is pretty thrashed at the moment.   His advice was lots of high calorie smoothies, drinks, shakes, and good fatty foods like avocado which is Ryan's favorite anyway.  He even said Ryan should have lots of Cold Stone which delighted my husband to no end :)  Not sure if I am in full agreement with that one though doc.

The second appointment was pretty useless but standard protocol before you start a major drug therapy like Remicade.  We met one final time with Dr. L (P.S. We switched GI doctor's because we realized we were so unsatisfied with this doctor's care-a good, needed switch) so he could explain the risks, side effects, expectations, and other information about starting Remicade.  Basically said there are not serious side effects that occur frequently, but to just expect fatigue or maybe an allergic reaction, but both are rare.

That starts Monday and we cannot wait!  That will officially address Ryan's Crohn's Disease.  We hope it just kicks him into high gear to feel good and strengthen him back up!  We can expect that they will start an IV in Ryan's arm and then the transfusion takes about 3-4 hours.  We'll pack his iPad and a good book and sit back to let the meds work their magic!

I think that is all on us.  Ryan is conked out in our room after our hard, tiring day.  Yesterday when we got home from 5 hours of appointments he promptly slept for 4 hours straight :)  Still sick but we're hopeful for what's to come!!


Ryder Caleb

Yesterday Ryan quite literally told Crohn's to "eff off" and we ventured out for the first time in weeks to meet our brand new baby nephew, Ryder Caleb!!  He was born at 10:26 pm on August 7th.

This little guy kept his mom, dad, and big sister waiting for almost 2 weeks after his due date!  I love his strong, leading personality already!

He was the sweetest boy we have ever with dark blue eyes, some dark hair, and a very nice baby smell to him.  We're in love!

So eff you Crohn's, we have a new baby nephew to love on, and you WILL NOT stop us!


Welcome to the world Baby Ryder, you are a stud already and we can't wait to hang out with you again soon!

Love,
Aunt Carly & Uncle Ryan

Tuesday, August 7, 2012

Why Us?

Laying in bed a few nights ago, shoulder to shoulder, staring up at our darkened ceiling, Ryan quietly wondered aloud..."Why us?"

He was brave enough to say it out loud while I had kept my thoughts silent for weeks, maybe longer.

Why are we the sick ones?
Why does Ryan have such horrible Crohn'?
Why does our 2 year old marriage have to weather this so soon?
Why is this happening to us?
Why does the Lord not intervene?
Why is there no relief?
Why is Satan allowed to do this kind of thing?
Why do we feel so isolated in being young and sick?
Why Lord, is this what you have for us?
Why do other people get to be healthy?
Why doesn't this sort of illness happen to some really awful person instead of Ryan?
Why aren't things getting better?
Why us?

I wish I knew the answer to these questions.  I'm not sure if the knowing would help us take on this season more confidently, but perhaps would give us more clarity.  I would take clarity right now.

 However, even if I got the answer, I bet I wouldn't like it anyway.  Can you imagine that conversation with the Lord?

Carly: "Um, excuse me Lord, but why us?  Why are Ryan and I the couple battling sickness?"
Lord: [Insert His perfect, reasonable, holy, worthy answer]
Carly: "Oh well, that's fine but can you just make it stop?"

The lesson would have been lost on me obviously.  Because I find myself so often just wanting Ryan to 
be made well that instead of asking "What more do you have God?  How else will you reveal yourself?" I simply whine to Him, "Why?"

I've been told that these are moments when I'll wish God didn't trust us this much.

No doubt indeed.  This is true. But I'm such a dang mess that I end up thinking it's a worthwhile investment to put on the "good" Christian face and so simply justify away the hardship with a Creator's trust.  But alas, I am sinful and weak.  And in no such condition to be so wise.

Today, I do wonder why.  No whining, no agenda, just desiring a straight forward answer.  Why is my husband, the most incredible man I know, the most godly, the most obedient, the most adventurous, the most passionate, the most tender hearted, the most gentle, the greatest leader, and influential beyond words....

I wonder in my heart where only God can see, why Ryan?

Sunday, August 5, 2012

A Wee Update

 Do want the good news or the bad?  The good news is Ryan is sleeping a lot -about 16-18 hrs on average-which promotes healing.  And that's where the good news stops.  Onto the less good:  last night and this morning were pretty brutal.  Ryan woke up at 4 am with bowel and pain issues, again at 6 am, again at 8 am and finally at 10 am.  We did not sleep much to say the least.  My poor sweet husband never gets to fully rest from health issues.  We long for that day.

A regular saying around our house has become, It's always something.  If it's not the actual pain, it's the side effects from the pain meds.  If it's not diarrhea, it's constipation.  If it's not being overly tired, it's having insomnia.  If it's not hunger, it's nausea.  If it's not a headache, it's a stomachache. If it's none of those issues, it's Crohn's induced arthritis or shoulder tension or fevers or night sweats or dizziness or dehydration or breathing problems or a bloody nose or weakness or weight loss or lung mucus or dry mouth or the fissures or another fistula or another abscess or drainage or discouragement...it is always something.  

He ran a 100.7 F temperature all dang night.  That is so frustrating to me because he sits around 99 F all day long and then night hits and he spikes upward.  I don't get it.  Overall Ryan said that he is feeling really discouraged about his physical state.  Amen, husband.  And the physical distress doesn't begin to describe where we are emotionally.  It just doesn't seem to be getting better.   I know, I know--it took 21 weeks to get here he won't be healthy overnight.  But come on!  It's almost a week after surgery and I would think that some bruising (see below if you dare) would subside and some strength would be returning.

Is it possible to sum up such a terrible season in just one word?  Let me try: exhausted.  Just totally tired and really struggling to see the Lord. We are in a season now of How long Lord?  I cannot wait for some relief, for the "always something" mentality to pass, and to be made to lie in green pastures and led to still waters (Psalm 23).

Until that time here are a quick few shots, though not very creative I'll admit, that gave me life to snap just the same:

Harpo came home today.  He stayed with his grandma and grandpa and after 12 days part we missed his sweet face.

Immediately fell asleep on the floor.

Ryan's lunch from Tokoyo Joe's that my mom brought over today.  Love that place because they use many organic and sustainable foods in their cooking.  Ryan had rice noodles, chicken, soft carrots, and bamboo shoots.  A fairly decent meal full of lots of good healthfulness!  He ate like 5 bites.

Sorry if you don't like this but this is the reality of Ryan's physical condition post-op.  This is the bruise on his right side from his last surgery.  We did the math...most recently he has had THREE surgeries in just NINE days!  Dang love, you are a stud and put up with a lot.

In semi good spirits at this moment!  This is Husband with his soy protein banana peanut butter shake and his ice water.  Those two armpit crevices is what he calls his "sweet spots" and keeps his drinks there for handy sipping ;)

He makes me lie down in green pastures. He leads me beside still waters.

Psalm 23:2

Saturday, August 4, 2012

Struggling

We're either MIA because things are so fantastic that we don't have time to update...OR Ryan is not doing well at all and all our energy is being used to get him better. This time it's the latter. 


He's been running a low grade fever since we brought him home Thursday and is still in tremendous pain.  It's painful to walk, lay, sit, and move in general.  He's having a hard time breathing from both a significant mucus build up in his lungs and pain in his abdomen. We have to really work for him to breathe deeply or he risks contracting pneumonia.  He has a breathing exercise called AirLife that he has to blow into to give his lungs a "workout" since his last surgery was laparoscopic.  We're really, really fighting for him to get better.  Pushing liquids, doing walks even though it is miserable, forcing down food even though he says nothing tastes good, and anything else that encourages him.


Sigh. Ryan Decker, will you ever catch a break?

Thursday, August 2, 2012

Home

We are home tonight.  And it is such an incredible blessing!  I promptly laid down for a 2.5 hour nap when we got home.  I am just tired and so completely exhausted.  I know Ryan is the same but even more so after all his poor body has been through

This morning was rough and we questioned whether or not they would discharge us.  Ryan was feeling pretty nauseous and sick this morning because of some pain meds acting up in his system and maybe even a little anxiety about heading home.  Totally understandable.  It took some patience, filling his belly with jello and broth and a leg massage (ha!) and he perked up a little by lunchtime.

We left the hospital around 3:15 pm and were home around 4.  It seems so quiet in our house without the beeps of machines, pumps of IV's, nurses in and out our door or people popping in to consult, train, schedule, or change something.  I'm grateful for all the resources at the hospital but WOW you do not sleep in that place!  Doesn't that seem strange?  For some reason I thought we would sleep great there without the responsibility of cooking, cleaning, and with all the help of so many people.  Oh well, we'll just sleep now!

Ryan is sore and very tired also.  On doctor's orders we took a very little walk down the street, probably 30 feet and turned around.  Very light activity is one of the best things for him at the moment to promote healing and prevent pneumonia.  

I am praying that we sleep SO well tonight.  Our bodies need uninterrupted rest, especially for Ryan so he can really heal.  After 5 surgeries in 8 weeks and 9 days in a hospital we would love a few days of uneventful health incidents.

But it looks like we'll have a new niece or nephew very soon so we are looking forward to that :)  A very sweet thing to look forward to after so many hard days lately.  I'll keep you all posted about Ryan's first night and weekend home.  Thanks for praying and checking in :)

Sweet Rilyn (who will be a big sister soon) came to visit us in the hospital!

Wednesday, August 1, 2012

Slow Progress

Ryan told me the other day that he is excited for the day when my blog posts go back to anything besides him being sick.  Me too husband, because that means you'll be feeling well again!!  For now though, I want to keep everyone up to date who is so diligently and generously praying for us.  Keeping you in the loop is the least we can do.

So Ryan had Surgery #5 on Monday evening-the biggest and most invasive of any of them so far.  He did well in the OR and the doctor was pleased with the results.  Ryan woke up very groggy and pretty ticked about a catheter in this bladder which makes me giggle a little now-poor husband is always waking up to bad surprises after surgery!

We've come to expect that 24-36 hours after any surgery all the anesthesia will wear off and that leaves Ryan is a very miserable and painful place.  I will not be tired of that count down!

Yesterday evening from about 6-10 pm Ryan was miserable.  Absolutely miserable and in excruciating pain.  The procedure that they did included a laparoscopy which means they blow up his cavity with air to gain better access to what they need inside and unfortunately that results in major pain in the shoulders and shoulder blades after surgery. The air is just trapped in the cavity until he can walk and move it all out.  But because of the pain meds he gets super light headed and dizzy and can't walk.  It's a catch 22.  We tried to get him up for a few minutes last night but he blacked out for a few seconds so that was a fail.  He was OK though and he was sitting when his vision went out so he was safe.

For pain control, his doctor had him put on a PCA machine which stands for Patient Controlled Administration and that means he in in charge of his pain meds.  He can administer a .1 mg dose of a narcotic every 8 minutes.  That helped a little.  What we really need is tons of mercy from the Lord, patience, more walks (when he can manage it), and rest.

This morning/afternoon seems to be about the same.  His pain is still consistent and he is so exhausted all the time, sore from surgery, bloated from eating, and that radiating pain in his shoulders/shoulder blades remains.  This poor guy can't win but as you know he is so persevering and brave!!

He did have a few wins though:  He progressing from a liquid diet (broth, gatorade, popsicles) to a full liquid diet which included things like pudding, instant breakfast drinks, yogurt, ice cream, cream of wheat, etc.  Anything that will smoothly move through him.  He is still only up 1 lb but we'll take what we can get.  He is napping like a pro, causing trouble for all the nurses, and is best friends with his doctor.  Ryan is amazing no matter what he is going through.

I believe we will be in the hospital for 2-3 more days and that is a very optimistic guess.  We need to get him on a soft diet (white bread, steamed veggies, canned fruit, small pieces of very lean meat etc), get his pain under control with oral meds, and strengthen him so that he can walk without being so shaky and weak.  We want him to thrive at home!

Updates to come as this journey to continues.  The rough days are to be expected but we're hopeful that the rough waters now will lead to calm later.  He is in the heavy, hard place now but it has to happen to get him better.  No pain no gain, right?

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