So far...

...so good!

We are 3 weeks out from the last surgery, and the incision is healing up nicely.  November was the last time we saw this.  Just skin.  Dr. G is pleased with how it looks, but also agrees it is still too early to tell if it's going to STAY this way.  It typically "goes south" around week 4.  We really covet your prayers these next couple of weeks.  We are all crossing our fingers and holding our breaths for all to stay well.  Caed is feeling 100%!  Zero pain, and his big appetite is back.  We are still pushing supplemental nutrition, and will continue indefinitely.  The scale is not showing any weight gain, but I just feel there has been some (maybe just in ounces).  He looks different to me. 

When looking at Caed's tummy, ALL our attention has been directed to the main incision.  But, as I look at this picture, I am reminded of the absence of our long-lost friend, Mr. G-tube.  Quite humbling.  I can hardly imagine what this summer is going to be like.  He can finally take his shirt off while swimming and be "just like his buddies!"  Oh Lord.....let this be!!!

We are still sitting out of baseball, but Caed (as well as some of his teammates) ask me DAILY when he can return.  I feel hopeful he can play at least part of the season.  But....as his mom, there is still so much fear.  Probably more the fear of 'what if' something happened again, and the GUILT that would consume my heart.  However, we are going to continue to take this day by day.....week by week.  I KNOW in the long run, this one season of Little League is a drop in the bucket compared to all that he, Lord willing, will get to do in the future.  He has continued to help be the 1st Base coach for the Pirates.  I love that he gets to feel a part of the team in that way.  It melts my heart to see him out there giving signals to his teammates.  Sometimes he is cautious, but most often he is very aggressive and fearless in sending them on to 2nd!  The Pirates are undefeated thus far.

Speaking of baseball....we are on our way to an afternoon at the ballpark.  Caed's team plays first, then Caleb's.

Thanking God for these peaceful days.......

The Unforgettable Anatomy Lesson

What a difference a week makes!  Each day Caed has gotten stronger, had less pain,.....and a greater appetite.  However, the biggest change we have seen has been bedtime.  He had been getting up every 2-3 hours crying in pain for almost 10 days straight.  He was exhausted.  We were exhausted.  But, each night began getting better.  Longer time between pain spells, until 2 nights ago.....this boy slept 10 hours!  (and possibly would have longer had his mean Mama not woken him up for school!)  His energy level is definitely back 100%!

Now that we have cleared the pain hurdle, our next 2 objectives are weight gain and of course incision staying CLOSED!  We have tried for months getting Caed to drink supplemental nutrition shakes.  He would for a few days, then begin to fight us on them.  We tried them all.  Different brands.  Different flavors.  Different ways of making them.  Still no luck.

But, after our last surgery and loss of 5-6 lbs.....we knew desperate times indeed called for desperate measures.  I knew how well incentive charts work in elementary school.  Wondered if by chance it would work here at home too. 

Well, guess what? It did!  We have not had any trouble getting him to drink one each day.  Now, you may see a small 4-letter word circled in blue at the bottom of the chart and wonder if that might have anything to do with it.  The answer is most definitely YES!  Once Caed fills in all 30 boxes, he will be rewarded with a new BIKE!  (may seem extreme.....but we were planning on getting him a new one this summer anyway since his old one broke last year.....but, SHHH!....don't tell him that!)  He has already started a wish list for his next chart.  Oh boy!  47 was his starting weight.  Our goal will be at least 51-52.  We will get on the scale every Sunday.

This past week in our class we began studying Anatomy during Science.  We started with the brain....moved onto the respiratory system....and then the digestive.  I knew Caed, as well as the rest of the class would be fairly interested in that day.  These sweet friends of his have walked this tough year right along side of him.  Caed has shown them his feeding tube, and a few of them even took turns pushing water through it.  They have seen the various stages of his incision (other than when we were packing it), and have been SO incredibly supportive and protective of him.  I honestly worried at times if I was informing them "too much" of whatever Caed was going through at the time.  But, I truly believe they have learned MORE watching him this year and getting a "hands on" lesson regarding intestines, surgeries, incisions, feeding tubes, and how not everybody is "normal and healthy."

On Thurs., after we discussed how food moves through their body, I asked for 2 volunteers.  Each student held the end of a 20 foot piece of string.  It stretched a little over 1/2 way across the room.  Then I asked Caed to come up and hold another piece of string.  His piece was about 2 feet.  A FRACTION of the other one.  One little boy said, "Wow Caed!  I knew you lost some intestines, but I had no idea it was that much!"  Caed looked at me and said, "I didn't either."  It was an anatomy lesson I will never forget.  To have Caed involved in it, as well as his friends, and for him to SEE the difference.  Although I'll have to admit, it shocked the teacher too.  You can know this information in your head.  You can have doctors tell you things all day long, but to actually see it.....was hard. 

Since that day Caed has asked me so many questions regarding his sbs.  I think he is finally at the age he can really begin understanding some of it.  I also think the string lesson has helped him understand why we have been pushing those supp shakes so much.  Things are beginning to click.

Thank you for all your prayers for Caed once again during these past few weeks (especially).   It can be a reminder of how quick things can change (good OR bad).  We will go for another follow up appointment with Dr. G on Thurs.  Not really sure what to expect.  Incision is actually looking great, but it usually does at this point.  Seems to be week 4 when it goes "bad."  Deep down, I really have HIGH HOPES that this time will be different.  Fear and "what ifs" still rear their ugly heads at times, but desperately trying to cling to His Peace DAILY!

Here is a quote that really spoke to me this week.  May it also encourage you!
"Peace is my continual gift to you.  It flows abundantly from My throne of grace.  Just as the Israelites could not store up manna for the future but had to gather it daily, so it is with My Peace.  The day-by-day collecting of manna kept My people aware of their dependence on Me.  Similarly, I give you sufficient Peace for the present, when you come to Me by prayer and petition with thanksgiving.  If I gave you permanent Peace, independent of My Presence, you might fall into the trap of self-sufficiency.  May that never be!  I have designed you to need Me moment by moment.  As your awareness of your neediness increases, so does your realization of My abundant sufficiency.  I can meet every one of your needs without draining My resources at all.  Approach My throne of grace with bold confidence, receiving My Peace with a thankful heart."   (Jesus Calling)

My heart is hurting

I haven't felt this burdened for Caed in a very long time. Might be odd considering the year he has had, but just in the last few days, it has culminated to the point where it is ((tough)) for me to even look at him. Caed has not been this sick looking since 2008, just before heading up to UNMC for the first time. He has never been a big boy, and we knew with simple genetics....odds were stacked against him there as well. BUT...you throw in the ShortGut, and we are fighting a never-ending battle. Since surgery a week ago, he has lost 4-5 lbs. For a normal child, this would be a lot. For an sbs'er.....it is enormous! His arms and legs are smaller (circumference) than his 4 yr. old brother's. It's been tough being his Mama....trying to console when he is having pain. Typically I rub his back during a spell. Now, I shed silent tears running my hand across.....bones.

Caed is still experiencing some intestinal pain. We are trying to eliminate possible causes (meds), but also wonder if it's just going to take time for all that his gut has been through this past week to simply start working again. During the day, his spells (and # of trips to the restroom) are getting fewer. However, nighttime seems to be the worst. He has been sleeping with us since we got home, and the moans and cries come about every 2 hours.

This morning was the Opening Ceremonies for Idalou's Little League Season. Both Caed and Caleb are participating this year. Caleb is playing t-ball for the 1st time, and Caed is back on his team from last year...the Pirates. He will be "helping" the coaches for awhile, but we are praying he can get stronger and that incision can heal once and for all so he can play at least part of the season. I am not certain of the exact number of players that were introduced today. 200+? As they call each player's name, they run from 1st base to home plate. I was very worried knowing Caed was watching everyone else sprint their hardest when being introduced. I knew he physically could NOT sprint, but was concerned adrenaline pumping might make him push it harder than he needed to.

He was the first player from his team called. He walked. It BROKE MY HEART to see his frail little body walk. Of the 200....he was the only one to walk to home plate. From an incisional standpoint, it's what I wanted. From a Mommy's standpoint, it was almost too much.






Now for the story I have been promising to tell you since Sunday night:
Our plan was to be discharged on Sunday; however, because Caed was experiencing SUCH awful gas pains, Dr. G didn't feel good about sending him home. Our goal was to either pass gas or poop. Caed would sit on the potty crying...."I WANT TO! I just can't!" After 3 c-sections, I could empathize 100%. He had been in such incredible pain that day. White knuckles squeezing the rails of his hospital bed where like flashbacks from a time I never ever wanted to re-live. Helplessness. That's what was consuming us that day.

That evening at exactly 6:45, Caed asked to go back to the restroom. Not unusual. He had been living on it all day. Just NOTHING happening. He sat crying. I stood rubbing his back. Todd and the nurse stood just outside bathroom door discussing our problem. All of a sudden.....you- know- what happens! The "shot heard around the world" took place in room 371. Immediately there was rejoicing. Both Todd and I looked at the nurse and said...."Go get those discharge papers!!!" Tears of JOY flooded that tiny bathroom. Literally 10 seconds had gone by and.....

....my phone alerts me of a text message. I look down to see it was from a good friend who was not only walking this journey with Caed, but also her father-n-law. Sonny's story is nothing less than miraculous. He and Caed have such similar stories, and also share the same docs in the rehab program at UNMC. He is also from Idalou, and ironically, we are currently living in the home he grew up in as a child. To say there is a bond, is an understatement.

The Lord has done absolutely AMAZING things in this man's life over the last few years since his injury, but we have finally seen healing take place just in the last few months. My text read:

"sitting here listening to Sonny give his testimony tonight at church and mentioning Caed and his braveness, thankful for yalls family's story that led Sonny to Nebraska. A special prayer was given for Caed!!...."

I read and cried. I am SO aware of the hundreds of prayers that were specifically lifted for Caed that day. I received many of your messages letting me know your Sunday School classes and churches prayed for him...that day! You will never know what that means to us. THANK YOU! But, something about Sonny leading that prayer right then....and that was the exact time Caed was finally given great relief and ultimately discharged...was unexplainable.

Only God.


Back to baseball. This morning only minutes before the ceremony got started, I happened to look at home plate and much to my surprise, I saw TWO very important people standing there. Sonny....whom I just mentioned. And Tanner.....who has become very special to Caed. His story is also long and amazing. (star Idalou High School athlete who traumatically was injured (brain) in a football game in 2008). Tanner was there to throw out the first pitch. Tears came to my eyes seeing him. Seeing how far he has come. Then as I looked at Sonny, same tears shed for exact same reasons. I know Caed has been an encouragement to them. But now....the tables have turned, and I desperately look to them for HOPE!

Sonny was there this morning to say a prayer for the players, coaches, and this new season. In the middle of his prayer, he once again specifically mentions Caed. I completely lost it at that point. Sobbing there on the front row. My heart is hurting so badly for Caed. He is struggling. He is not healthy. He is still in pain. The Lord knew HOW MUCH I needed that prayer. Despite the hundreds of other parents sitting in the ballpark, I felt so alone. So burdened. But, I felt God reach down to hold me. To wipe those tears streaming down my cheeks and reassure me that just as He has been faithful to Sonny....and Tanner, he will also continue being faithful to Caed.

Sonny is not back to his old self. His life has been changed. Tanner is also not back to his old self. His life too has been drastically altered. Caed is no different. He will never be like he was at age 3. He will never be like all his friends. He will deal with this and FIGHT everyday for the rest of his life.

"Though you lose everything else, if you gain My Peace, you are rich indeed."

In His Eyes

For roughly 48 hours Caed was in a constant state of pain and discomfort. Not from the incision, but rather all the air found trapped in his gut, along with constipation. When I say it was constant....I literally mean NO RELIEF.....none. It was absolutely heart-wrenching to see, or rather hear. Caed has experienced MUCH pain over these last 4 years; however, most was back in 2008. There is one other time in which watching him suffer almost proved to be too much. Gallbladder attacks last summer......which oddly have lead us to our present suffering. We were quickly taken back to a place in which no parent should have to sit by helplessly and watch. We found ourselves in a catch 22. He desperately needed relief! But which do you address first? The cause or the effect? He was given just about everything possible at the hospital to help things "begin moving." It was awful. Absolutely awful. Severe cramping was then brought on from those drugs. So, then we moved to pain management. Anything....to help control the misery he was in. However, these drugs are known to "stop you up." Ahhhhh! We tried everything. Warm pack...walking.....specific foods (which he fought us hard on the last 2!) Caed was exhausted. Todd and I were exhausted. When you find yourself thrown back in this vicious life.....you do what you have to do. Survival mode kicks in, and tough (((tough))) love becomes your number 1 priority.

However....every story must have a happy ending, and this one is no different. Yesterday at lunch I came home from school to check in on Caed and Todd. I could see the back of his head sitting on the couch. But, as he turned around and we made eye contact, I knew.

Pain had indeed left the building!

Caed's eyes were back. His smile was back. His voice was back (had not heard him really talk in 4 days....only moans, cries, and screams). He stood up (yes, a little hunched) and walked toward me. DRASTIC CHANGE! He was so excited to tell me he had pooped 4 times! (remember in Short Gut World....your life revolves around this!)

Caed is back. He may walk slower....a little hunched back....and literally skin and bones, but none of that matters. To see his smile. To finally hear his contagious laugh. Is enough.

We will head back to see Dr. G tomorrow. Now that our plumbing issues have worked themselves out, we will turn our focus and PRAYERS on incision healing. ONCE and FOR ALL!

Thank you again for all the prayers voiced for our little warrior. I told you I would share an amazing (God) story from this weekend. I have not forgotten. Once we have caught up on our sleep and get unpacked from our latest hospital stay, I promise to share it with you. Just wanted to let you know your sweet prayers for Caed were heard and ANSWERED!! We love you all!

(Caed is still experiencing sporadic pain spells...nothing like before, but Lord willing, even those will be gone very SOON!)

Home

This unfortunately needs to be very short tonight. (although I have MUCH I want to share) We are all utterly exhausted, and I have a feeling we'll be getting very little sleep tonight either.

We got home about 9 this evening. Praise GOD for that!! BUT....Caed is still in quite a bit of pain. The x-rays this morning showed lots of air in the right side of his bowel. This is where Caed has been pointing to (complaining) since day 1. It was a REALLY hard day today. I honestly can't remember even one time in which he smiled or felt "good." Today reminded us SO much of 2008.

I will have to fast forward, but promise to come back and share an amazing thing that happened just before discharge. Thanks to YOU ALL!!

But, for now.....simply say, THANK YOU for all your prayers for him. But, also would ask you please continue. He is hurting more (continuously) than we have seen in a very long time. It WILL pass. Just extremely hard on him.....and for us to have to sit by completely helpless and watch is tough on us. I know with each passing day he will receive more relief, and before we know it, we'll be getting on to him for running in the house or pestering his little brother. (times like tonight though I sure wish it would come SOON!!!!)

Thank you again.

#7

Caed had 2 very important visitors yesterday. Two of his BIGGEST fans! My....time has flown by. I can't believe Caleb is now the age that Caed was when the volvulus first occurred. It wasn't the best visit since Caed was still fresh from surgery and in a lot of pain, but I know it did all three of them good to see each other.

Caed had a VERY rough evening! Basically in pain the entire night. He "slept" only 15-20 minutes at a time. Pretty tough on Mama to witness....again. This morning, however during rounds Dr. G upped his pain med quite a bit and also added a stronger one to the mix. Since then, he has finally been able to get some much needed rest. Thank you God for that!

Our original plan was to be discharged sometime today, but.....definitely not going to happen now. Our goal(s) will be to get pain under control, walk, EAT, and of course have a bm. I honestly think the pain issue plays the biggest role. If it gets under control, he will just naturally feel better. Therefore, the walking, eating, etc.....should come.

Dr. G feels she may have finally fixed our 10 month long problem. Todd and I are also very encouraged. She opened him up quite a bit more this time. His intestines had pushed their way back up....she fixed that, as well as cleaned up the site again. She also ended up completely closing the hole in his stomach (via g-tube). Something we had kept open (just in case he ever needed it again). Thank you all for your prayers for him over this past year (as well as 4 long years).

We are slowly making progress today....

Persevere

My intention was to write an informative post tonight regarding Caed's surgery today. However...my body is screaming at me that it can't stay up much longer. I promise I will update sometime this weekend (as Caed allows). He had a typical first day of surgery....slept a lot, but also has been in quite a bit of pain. (incision is much bigger now) Controlling it, as always, is our #1 objective at this point. The next several days will be ((tough)), but hopeful he will bounce back to his old self in no time. Thank you all SO MUCH for all the messages you sent. Many times today....I became so overwhelmed at your love and support (and particularly prayers), I intentionally had to stay away from my phone. Seeing them all, and being reminded of each one of your faces, was at times too much for this emotional-basket-case Mama. THANK YOU!!!!

Wanted to simply write an excerpt from a book my mom lent to me last night entitled Jesus Lives. It really spoke to me:

TRIALS
"One of the hardest things about trials is the uncertainty about how long they will last. Usually you can't predict or control the unpleasant circumstances. You just have to live with them indefinitely. At times you may feel as if you can endure no more, but you can always reach out to Me for help. As you cling to Me moment by moment, I enable you to persevere. This produces in you not only endurance but also a harvest of righteousness and peace." (Sarah Young)

Lord, may it be with us...