Results are in...

Caed's lab work and other results came back......GREAT! (sbs speaking) They were checking for vitamin deficiencies and also pancreatic enzymes that are very common in short gut patients (causing fat malabsorbtion). They found neither!! Honestly, this was a huge shock, but SO VERY relieved. Now, we will concentrate on getting his incision healed once and for all.

Caed came running into the house a few days ago...frantic and crying. He had his shirt lifted up and blood was streaming down his tummy. My heart stopped for a few seconds until I realized his "scab" had been accidentally ripped off while playing. (he had fallen) We cleaned it up as best we could and then burned it. Oh, it looked awful! Dr. G's plan is to let the scab come off naturally (unlike the way it happened a few days ago) and then burn it....and repeat as long as necessary.

The news from NE truly makes my Christmas! We will start Caed on some supplement drinks...and then Lord willing, get his feeding tube OUT this next year!! Quite unimaginable to me.....it's been a long 4 years. But in the same breath, 4 years of continued faithfulness throughout all the good AND the bad. Thank you for praying for him......

Still waiting....

There were some contamination issues with the lab work, so we had to take Caed back and get a re-draw. Honestly, a piece of cake for him. He didn't mind in the least. It was more an issue for Todd and I. We are on pins and needles here waiting for results, so to be told we needed to "start over," was a little frustrating. So.....we continue to wait.

The incision is not looking good. It sends chills up Todd and I's spine when we see it. It is as though this past month and the last surgery never happened. Our next appointment with Dr. G is this Thurs., and hopefully we will have heard something from labs.

Trying to stay positive.......

Stone Cold

That basically describes Caed when getting any medical treatment these days. He has always been very brave, but the older he is getting...the MORE we are seeing this in him. Thursday he had to get his monthly B12 shot, the "big draw" of labs (9-10 viles), and then when the surgeon began burning and cutting on his incision....nothing. No reaction, just sat stone cold. Todd went with him and said the nurses seemed more nervous doing these things than Caed was!

Now, we wait.

In the meantime, we will start back burning the tissue with Silver Nitrate every few days. (hopefully it will work this time!) Dr. G did not feel the site was infected, so that is great news. We will go back to see her in 2 weeks. I'm certain we will hear something from our IRP team in Nebraska concerning Caed's labs. There has been talk that his body is not absorbing well (or deficient in certain areas); therefore, his body is having a difficult time healing (incision).

Caed has been OFF all feeds for the past 6-7 weeks!! The plan from our time in NE this summer was to wean him this fall and then see how he does "feed FREE" for a few months (checking labs along the way), and then hopefully have tube removed in the spring. This would be HUGE! Caed will have had his feeding tube 4 years. Unbelievable....when I think back on it all. However, if he is having these recent issues due to malabsorption/deficiencies, then we will probably look at some kind of daily supplement. (similar to nightly feedings, but rather taken orally) We are praying he won't have to go back on tube feeds. I keep reminding myself there are worse things than being "hooked up" at night, but.....this really would be such a relief to just have that thing GONE...once and for all!

One definite blessing throughout these past 4-5 months in dealing with his incision has been he FEELS GREAT!!!! Caed is the same active, funny little boy as always. He has not been in any pain (other than emotional at times), which is a huge praise....not to be taken for granted. Thank you all for keeping Caed in your prayers...again! He will get through this.

It Could Always Be Worse...

I was introduced to this wonderful book back in my Children's Lit class in college. It instantly hit a chord with me....not sure why. My life at that time was relatively easy and care free (particularly in hindsight). But, for some reason the title of this book and the author's purpose in writing this award winning folk tale.....stayed with me. All these years.

Today has been one of those days that self-pity, frustration, disappointment, and fear have taken root (yet again) in my heart. Things were going beautifully. All according to plan. And then I heard that cry...

An all familiar cry we have learned from Caed. When you hear it, you just know.... Gut trouble. 99% of the time it can be easily relieved by a visit (or 2) to the bathroom. It just comes with being an SBS'er. I hollered to him to go to the restroom while continuing to fold laundry. Never skipping a beat. Never thinking anything more. The cries continued. Finally, when I went to check on him, he held his hand over his incision area and let out another moan. Still clueless to what he was trying to tell me, I began reprimanding him for sneaking too many cookies (ie. sugar pain) earlier in the evening. He shook his head no, and finally said softly....."It's my incision. It hurts!"

My heart sunk as my eyes saw the tiny opening. In the same place. I wish I knew what expression came across my face. I wish I could have known to hide it. Soon, Caed began weeping uncontrollably, grabbing hold of me. Then the all too familiar "I'm scared Mommy! I don't want to go back!" echoed over and over off the cold bathroom floor. In that instant, I knew I better shape up and show him that I wasn't worried in the least. The 'Everything was Going to be OK' speech was quickly recited as I tried desperately to get his attention on something, anything else.

But deep down, Todd and I knew. This isn't good. WHY did this happen? The incision had been looking great up until that point. The interrogation began as Todd and I questioned every action, every decision, we had made over these past 3 weeks. What did we do wrong? Should we have allowed this...or that?

I called his local surgeon and thankfully got an appointment this week! Not sure what the solution will be, but our gut (no pun intended) tells us a plastic surgeon may need to get involved now. Once again, I know this isn't a life or death matter. He will get over yet another hurdle. But......we were so hoping this was going to be the end. Problem solved 3 weeks ago. Just seems once you get comfortable again....another curve ball is thrown. We are just tired. So very tired. And ready to get this year BEHIND us!

My heart has been heavy today. A deep sadness swept in last night and has had a strong hold on me ever since. However, as I grudgingly made my way through Walmart tonight....it hit me! Like a ton of bricks barricading my little basket in the middle of the cereal aisle.....

My favorite story! Remember Lori, "It Could ALWAYS Be Worse!!!" No matter the situation. No matter how hopeless. How helpless. How lost...or out of 'control' you feel. It can always be worse. I'm not sure if there is any deep Biblical truth to that little saying, but I do know what it reminds me of when I hear it. I am reminded of the countless...endless number of ways the Lord has blessed me. The ways he continues to bless me. It's in the little things....a roof over my head. Electricity. (sure don't take that for granted this week!) Food in the pantry. A loving, Godly husband enjoying a game of football in the next room. My three beautiful children sleeping soundly (and warm) in their beds. Toys and the laughter they bring. A job I love to go to. And a computer that allows me to share my heart with the world. My list, like yours....can go on and on and on. Things are good! Blessings and favor have been graciously poured into our home this year. We have MUCH to thank God for tonight. And MUCH to thank God (in advance) in the coming days.....

This 'new' problem did not catch God off guard, like it did us. There is a plan and a purpose for everything under the sun. We may question it. We may not understand it. But HE is still in control. And HE will never let go of Caed. He is lovingly, purposefully being held ever so tightly in the palms of His hands.

BIG night!

5 months. That's the last big bath Caed has had. Ever since his gb surgery in June, we have not been allowed to immerse the incision. Finally, today....he got the go ahead to GET WET! This was a big night. Caed was gitty with excitement. He asked me, " ...you mean I can even dunk my head under the water?"

It's easy to take things like this for granted....until they are taken away. We have unfortunately been taught this lesson over...and over....and over these past 3 years. Caed handles them all like a champ. The Lord blessed him with a very easy-going happy personality. He LOVES to laugh and can find something funny in basically any situation. (sometimes can be a downfall....I've found out this year in school) ;)

Caed has been doing excellent. Our only concern has been keeping him "calm." He feels wonderful and acts as though the surgery last Friday never occurred. He had a great checkup this afternoon with Dr. G. We are certainly hoping this is the end of the incision issues. Thank you all again for your continued prayers! They have certainly been felt.

Gentle Reminders

The circumstances were quite different, but there we were once again sitting helpless in a surgical waiting room awaiting Dr. G....

The morning started out very early. 4am to be exact. All the pre-op requirements were clock work to me. They were steps to a dance that I had seemingly performed (and mastered) 1000x prior. There is a numbing. A rawness. A cold heart....just doing its job....again, with every hospital admission. Caed was being, like always, a rockstar. He as well knew the drill. Answered the questions. Held out his arms, fingers, and any other extremities when needed as though he was simply tying his shoes. Unphased. I was taken back to the days when he experienced a severe case of white-coat syndrome. Or "ANYONE walking into the room" syndrome. Doctors, nurses, techs, cleaning ladies..... He would fight, cry, beg, kick, and scream. My little boy was growing up.

I could hear the nurses in the next room saying "no owies!" to a crying child. My only choice was to laugh. OH, how I LOATHED those 2 little words. I'm sure for some children it works like a charm. To those who have experienced a trauma so big....those 2 annoying little words are like fingernails on a chalkboard.

Caed was called back rather quickly (3 hours upon arriving). He was Dr. G's only scheduled surgery of the day. Such a blessing. When it was time, Caed was a rock. The PA came, and we walked together as she pushed Caed's gurney down the hall. We got to the all familiar intersection. This is where you stop, give your final hug/kiss and say, "We'll see you SOON!" Caed did not cry or whimper. Just gave a hug and looked straight ahead at the "Authorized Personnel Only Beyond This Point" sign. As the doors closed behind them, my heart sunk. Something was different this go around. I'm not even sure what it was. This surgery was quick and easy. He was not in any pain. Why in the world did I feel like collapsing right there in the middle of the hallway? I told Todd I needed to find a restroom and I would meet him down in the waiting room soon. As I locked the door, I stood paralyzed. Wanting so badly to allow myself the permission to fall apart. To let it all out! The years of frustration, disappointment, grief, pretend strength, intense fear, and exhaustion. A few tears fell on the floor that morning, but were quickly wiped away. The SuperMom suit was pulled out and strategically put on as I walked out of that bathroom to go find my place in the most dreaded room of the hospital. The clock on the wall happened to be right in my view. I tried so hard not to look at it. The minutes passed and at one point Todd and I both felt.....this is taking much longer than it was supposed to. Your mind races. Hands began to shake. And a restless feeling soon floods your entire body. I knew if I had to sit even one more second listening to Regis and Kelly, I would lose it!

Close to an hour and a half later, Dr. G quickly walks in and makes her way to our little corner. Everything went well. She was, however a little stumped with the "mystery stitch" that ended up being the culprit of this whole ordeal. She said it was very infected and quite long with knots on both ends. She took it out and replaced it with a dissolvable one. She also cauterized the tissue around his g-tube site, which I am super excited about. We haven't seen either site due to the bandages, but hope to in the next 24 hours. Our only main concern is staph. Always a big risk with surgery, so we are taking the antibiotic regimen very seriously.

After we talked briefly about the surgery, the 3 of us sat there in a crowed waiting room and had a surprising conversation. It was one I had dreamed about having over these past 3 years. How I wished it would have been longer. I regretfully wish I had asked certain things. However, it was another divine appointment that the Lord knew I needed.

Dr. G sat there on the couch with her head buried down in her lap. She told us, "....in all of my years practicing medicine, there are a couple of kiddos that stand out. The night I saw your son for the first time (Mar. 1, 2008), I had NO clue what was wrong with him. And it's a night I will never forget. Guys, kids have died on my operating table from bursted appendix. It's 2011! I don't understand that! It shouldn't happen. And your son....should not be alive today. Had you gotten in your car that day and headed back to Celina (as planned), you would not have had a son at the end of the trip. It's that simple. I am completely amazed how well he is doing. I can't comprehend how he avoided transplant and/or the STEP (bowel lengthening surgery) procedure." She sat there for what seemed like an eternity. She was not in any hurry. And talked with us about NE and other children in need of their expertise. As much as I loved talking with her, it was hard to hear. Memories of our time with Dr. G were not good ones. Not because of her, but rather she was there during Caed's darkest days (months).

Todd and I sat there agreeing and chiming in. This was NOTHING new we hadn't heard before. But, to hear her. The one that opened him up that night. The one that God used to save his life initially. To hear an expert in pediatric emergency surgery say to you, "I thought he was going to die that night in the OR......", is incomprehensible. I can't express my heart adequately to communicate how awful those words are to hear. And to hear them AGAIN...3 1/2 years later. We hear all the time what an impact Caed has made on people's lives. He, of course, oblivious to the magnitude his story has had on grown adults. But, for me....to hear he made such an impression on a surgeon. His story is one she said she would "never forget." Do you know how many children she has operated on in her long career? I don't think I would even come close if I took a guess.

It reminds me of how it is to be a parent. You SEE your baby day in-day out. Month after month. Year after year. Sure, you see changes in them. You see all the new things they are learning. But, to be that parent who is around that child every single day....is quite different than being the grandparent or family member who only gets to see the child once or twice a year! The changes are enormous! Your brain still has that child looking and acting a certain way. But, then to SEE something else can be mind boggling. I imagine that's how it is for Dr. G. She knew Caed at his very worst. Even when we left for NE, things were not good with Caed. Over 3 years had passed since their reunion a couple of months ago.

We have been with Caed every day.....since March 1, 2008. Yes, we saw the changes. The good and the bad ones. His healing and rehab have been gradual for us. Quite the opposite for Dr. G!
But to see her amazement, to hear her memories from 2008, were just what Todd and I needed.

It's easy to get complacent. It's easy to agree with people, "Yes, he is a miracle!" But, as his parents, all we see these days is....normal. (other than nightly bathtime) He blends in at school, in sports, at the mall. He is just a regular little 8 yr. old boy to everyone who sees him. He gets in trouble at home just like Reagan and Caleb. Even in class, I find myself just seeing Caed. Not my son, and surely not a boy who almost died 3 years ago! And that's how it should be. To be reminded constantly of the magnitude of his story, can be rather overwhelming. I'm afraid I would be an utter MESS if I did. But, I can think back over the course of these 3+ years and see how God divinely allowed paths to cross, conversations to come about, or circumstances to arise in which He gently reminded me of His great work in Caed's life. "Don't forget....." I can almost hear Him whisper. "Don't get caught up in the little things of this life that don't matter.....Remember My Healing Power! My Mercy! And that I LOVE your son and have a wonderful plan for his life!"

I don't know the future. And yet, my heart tells me this was not the last time we will kiss Caed in the intersection of the OR hallway. This will probably not be the last time we will anxiously sit on the edge of our seats as we eagerly await the sight of a surgeon walking through the doorway. Caed's story is far from over. But.....Lord willing, neither is mine.

Thank you Lord for putting up with my wavering faith. For always having to give me gentle (and other times harsh) nudges to remind me why I'm here. Thank You for Your calling on my life, even though I admit at times....I wish it didn't exist. I get selfish and desire to live life MY way. Forgive me! Thank You for YOUR strength over these last 3 years. I know it comes only from You! Thank You for Your mercy once again on my son and for his continued healing.

Halloween 2011

We had a great weekend dressing up......3 times to be exact. (minus the 103x Caed and Caleb did just playing around the house) My babies are growing UP!




Caleb: "I don't like 80's girls. They look WEIRD!" Oh, but if you could have seen us "80's girls" in person my little man....then you would have been just plain SCARED!

Emotions on high alert

Ever since Dr. G explained to Caed last week about his upcoming surgery and all it would involve, Caed has been great! I wasn't able to go to this appt, but when I finally met up with Caed a couple of hours after seeing the dr, he burst out of the car saying, "Guess what?!....Next Friday, Dr. G is going to fix my incision!......"(and on and on he went with the details). Almost giddy. I was rather shocked to say the least.

However, last night after attending a costume birthday party, Caed walked in the house and completely melted. There were no warning signs or conversations leading up to his breakdown. I heard a faint cry coming from the bathroom. When I walked in, he was sitting on the edge of the bathtub with tears streaming down his face. "I'm scared!!" I held him for almost a solid hour trying to console as the cries grew louder. I tried to reassure him this one would be "easy." Then...I stopped. I stopped trying to "fix it, " but rather just held him and let him cry it out.

It hit me in that instant the number of times Caed has heard us say those exact words over the past 3 1/2 years. "It's going to be ok, Caed. We PROMISE....this won't hurt. It'll be quick and easy." And yet, how many times were we proven to be liars? How many times did it hurt? How many times was it not ok? And here we are almost 4 years into this nightmare. It's far from quick and easy. I know he's just 8. Kids are very resilient, right? Yes, thank Almighty God they are! But, it's the 1000's of times just like last night that I myself just want to cry right along side him. Agree with him that we are scared too. That it kills us to see him in pain. And how tired....so very tired we also are of sbs.


For several months I have strategically steered clear of a New York Times Best Seller. I knew very little of the book, but anything that has to do with a small boy that becomes ill....I typically ignore. No matter if it gets rave reviews. A couple of weeks ago however, I had stopped by my grandmother's house and she had just finished this "dreaded" book. She handed it to me. Showed me all the pictures and began telling me story after story that was inside. I initially wanted to throw it across the room and move on to another topic of conversation. But, the more she talked, the more I became intrigued. Even after I left, I thought about this book for days on end. Deeply desiring to grab me a copy and dig in.

Yesterday I bit the bullet. I was in a Christian bookstore standing in the checkout line when a beautiful display of bright yellow books caught my eye. When I focused in enough to read the title, my stomach dropped. There it was....again! I stared at it for several minutes, and then without hesitation walked over, grabbed one, and quickly got back in line. Once all the other errands were completed, and everyone was settled at home, I eagerly curled up with that bright yellow book. I hadn't made it too far, when a sickening feeling developed in the pit of my stomach. My first thought was honestly whether I needed to grab something to eat to settle the awful feeling. I continued reading.... I got to chapter 4 or 5 and abruptly threw the book to the other side of the couch. I sat paralyzed. I sat angry. And then got up to quickly try to forget everything that I had just read 30 minutes prior. I went on about my day. Did all the things on my to-do list and more. And yet, it stayed with me the rest of the evening like a bad dream you just can't shake. No matter how much you say to yourself....."stop thinking about it!"....it only magnifies that much greater. Todd was working late, and as I crawled into bed, I could see that darn yellow book staring at me, taunting me, on the lower shelf of my nightstand where I had banished it several hours earlier. I was determined to not give it a second glance. And yet, something unexplainable continued tugging at me. It was a battle I was emotionally too worn out to fight.

I picked it up.

Only to read 2 more pages before once again throwing it to the floor! I was so angry. I don't want to go back there! There are too many painful memories! Please LEAVE ME ALONE!

I have shared with you numerous times what an analyzer I am. I will pick things apart in such detail, I easily lose sight of the big picture. That's where I find myself now. I enjoy telling Caed's story! I STRONGLY DESIRE to tell it in great detail someday in book-form. Why in the world has this little book affected me the way it has?

I live my life daily talking and dealing with short gut. Not only through Caed, but with a support group I am a member of. Parents who are just now starting this journey have loads of questions. I love to share all we have learned regarding various procedures, drugs, etc.... And likewise, have loads of questions myself I ask to those further on down the sbs road. The emails, texts, fb messages, and phone calls from "strangers" all over this country and world....are numerous. I have heard others' stories that are eerily familiar to Caed's. Eerily! I read short gut/transplant blogs every single night. I am completely immersed in it. Hospital life, PICU's, surgeries, the emotional roller coasters, and everything GI under the sun.

So what? What is it about this book that I can't handle? The memories it unearths are not new. I have thought about those and many more SO many times. And have shared them more that I can count. Why is this different? I truly want to finish it. I even tried skipping ahead to get to the "good parts." I don't care about the beginning. I know what he's talking about in every sentence. Been there. Done that. Got the t-shirt!

I keep coming back to this same thought. Does it really matter? Is it so imperative that I finish this particular book? No. Will I someday? Quite possibly. Will not reading this book cause my faith to waiver? No. Will not reading this book cause me to NOT deal with deep embedded issues that MUST come out now? No.

I truly believe I was drawn to this book for a reason. Was that reason God? Very well could be! However, I don't believe His plan is to HURT me. And yet that is what has occurred thus far. Therefore, I will put this little yellow book away (maybe hidden deep in the garage where it can't taunt me....), and trust the Lord will bring it back out if He so chooses...and in the perfect time.

And the verdict is......

another surgery!

Caed had another appointment with our local surgeon this afternoon. It was decided that since the silver nitrate wasn't working, a surgical fix would be needed. Not certain of details because I wasn't able to be there, but Todd relayed the basic info. She will push the tissue back in and try to find the source of the little blue mystery stitch. It is infected, and she believes it's spreading to the incision area. They might be related somehow. Simple cause and effect. Dr. G will also clean up around his G-tube site (cutting/burning the granular tissue that has built up around it), as well as put in a new feeding tube.

The surgery in itself will hopefully be very quick and easy. However, as a parent.....NO surgery is "easy." Putting him up on that gurney and watching him being wheeled away, puts a knot in my stomach that I can't possibly describe. This clearly is not our first rodeo, and I guess there is a part of me that knows the drill too well. When it comes to hospitals these days, I tend to harden my heart. Put on the tough exterior. Do what has to be done. And then cry about it later.

We have much to be thankful for...

Even though our IRP doctors are 700 miles away and make it super difficult in times like these because of the distance between us......we are grateful for a surgeon here locally that loves Caed. She knows him. She initially was the one who saved his life. And she's good! She has our complete trust.

Yes, it's another surgery. But Lord willing, this will fix our current problem. It's been a long summer and fall for Caed dealing with this day in day out. No, he has not been hurting. HUGE PRAISE! However, we have to change the bandage on it at least 2 times during the day. One perk of having Nurse Mom as your teacher.

Will it ever end? I ask myself that question more than you can imagine. 3 1/2 years. That's how old Caleb is....and how long Caed has become my hero. I tend to associate "the end" with his G-tube being gone! But will it really? We have begun aggressively weaning Caed from his nightly feedings. I worry.....constantly. Is he gaining weight? Is he getting all the proper nutrition he needs to grow and thrive? Am I making poor decisions concerning his health? What if....it doesn't work and we have to reinsert the tube? How long then? What will his teenage years be like? Will he be able to do all the physical things he loves so much? And as an adult? Lord, please prepare his sweet future wife to not only love him, but also be a good, sensitive nurse! ;)

You have listened to me spill my heart out and ask these same questions over and over and over. You have also heard me answer these same questions over and again. Will I ever finally learn? Will I ever STOP questioning God and His ways? ......no. This will be an area I struggle with til the day I die (as well as MANY others). I will never attain complete faith. It will constantly be a work in progress....but hopefully one that is improving.

I am tired. Physically, emotionally, and yes, spiritually. It seems life keeps throwing us curve ball after curve ball. Rather, I guess I should just be thankful coach hasn't pulled us and we are still in the ballgame. Lord, please give us strength. Strength to keep on keeping on. And not to lose our perspective. OUR CUP RUNNETH OVER....!!!

Incison Issues....continue

First of all, I want to apologize for not staying on top of this blog better. Once our school year started, I have been going strong and have not had much "spare" time unfortunately. Speaking of, school is going great! For those of you who do not know, I am teaching 2nd grade here in Idalou, and Caed has been allowed to be in MY CLASS! I have 14 other students and I truly love them all. I was never worried with Caed being in my room. 99% of the time, he literally is just a regular student....just like the rest. However, the few times we have had to deal with incision (or tummy) trouble, I am SO GRATEFUL to be near him! I had the privilege of homeschooling Reagan (3 yrs.), and now count it equally gratifying to be able to teach Caed. This is a special year that I am not taking for granted.

Now for an SBS update: Caed has done wonderfully ever since the gallbladder removal back in June. No more pain. Thank YOU God for that! However, we continue to have incision issues. There is a small section that just has not healed. Our local surgeon, as well as UNMC, feels it is just granular tissue. We have been burning the site a couple of times a week with silver nitrate, but honestly.....have been very frustrated at the lack of progress. They say it unfortunately takes a long time, but...ughhh! Maybe it just looks worse than it really is. We also are dealing with the "mystery stitch" that won't go away. It is a small blue stitch that sticks out of the skin. NE said they probably would just pull on it...and snip it off.

We are also aggressively weaning Caed from his tube feeds. So far, so good, but I constantly worry about his weight. In lieu of the decrease in calories, we have been pushing PediaSure, which Caed loves. Dr. M wants him to be completely FREE by Christmas. Then we will see how he does (weight & labs), and look to remove G-tube this spring!! A WONDERFUL thing.....yet as with all the other "changes " the past few years, it has me terrified. As much as you hate these machines, tubes, and meds.....it becomes your life. Your safety net. Without them, fear steps in. We will certainly cross that bridge when we come to it, Lord willing.

So, two specific prayer requests for Caed: Incision to heal up & weaning from tube feeds to be successful. THANK YOU!!!!

Other than those things, life is going strong (and busy!). Reagan and Caleb are doing wonderful! Todd and I are again trying to adjust to our new life as 2 full-time working parents.

I have attached a picture of Caed's incision. Sorry for the quality! (never could get it to load right) The silver nitrate will produce a scab....but then falls off, and we start over. The tissue has gotten bigger over the past 8+ weeks, so we are kind of in limbo with what to do next. These are the days when living 700 miles from our child's doctor is not ideal. Although NE has said we might need to make a "quick trip" to see what's really going on with this awful incision.

Thank you again for continuing to follow Caed's journey. And I really do promise to do a better job keeping you all informed.

Fingerprints

It's that time of year. Walmart shelves are growing sparse in the school supply section. Malls are getting more crowded as everyone scrambles to find shoes, clothes, and supplies to begin a new school year. There is an excitement among most parents. A groaning echoing from most students. I am experiencing both. I teach 2nd grade in the small West Texas town I grew up in. I love it here, and I love my job. I have been working tirelessly up in my room for the past 2 weeks and am super excited for the first day to finally arrive.

But then there is the aching. The pain. The fear. The grief. The disappointment that this summer handed us, and the longing for a "do-over!" Yes, we have been through worse. Much worse. But, it's never easy. I'm getting to the point that the "easy stuff" is wearing on me. I am tired. So very tired. Will it ever end?

Last week at our (local) surgeon's office, she decided we needed to begin putting Silver Nitrate on Caed's incision. If you have never seen SN, then picture a fireplace match. That is what we have to put on the opening of the incision every 3 days. It turns coal black. (and by the way, the container is labeled with enormous letters 'POISON'. I was instructed to be extremely careful in handling it, storing it, and administering it.) For someone who is NOT a nurse, stuff like this sends chills up my spine every time. Dr. G said to come back in 2 weeks and we would reassess the progress. The problem is.....I don't think there is any. It looks the same to me today as it did 2 weeks ago before we ever started the SN. She said, "worst case scenario, we will look at a surgical fix."

My heart is hurting tonight. I feel it in my bones. Surgery will be in order. Granted, it probably will be a very quick, easy one.....but it's #5.

I'm just tired.

Tomorrow is Caed's 8th birthday. EIGHT! I honestly can't believe it. Would like to say 'I don't know where the time has gone', but.....I know better. I remember like it was yesterday standing beside Caed's bed in PICU pleading with God to let us see his next birthday! And He DID! Thus far, four more to be exact. I am humbled. I am paralyzed with gratitude for the mercy lavished on my little boy. He brings us SUCH unexplainable joy. There is something so special about him, of which I have a very hard time wrapping my brain around. The fingerprints of God are undeniably smudged ALL over his little body. I see them! With each and every scar (and there are many), I see HIM!

I don't understand why this most recent surgery has included the complications it has. This was an easy one. And yet.....2 months later, here we still are. A HUGE praise that I cannot fail to mention is that Caed FEELS great! He is as rambunctious and ornery and funny as ever. Other than a few emotional issues (dealt with daily from this incision problem), he is good. Really good. And for that, I am so thankful. We have experienced the opposite this summer, so I don't take these "feel good days" for granted.

I don't know what the future holds. But, I am confident in WHO holds it. Desperately clinging to His promise tonight:

For I know the plans I have for you, declares the LORD, plans to prosper you....not to harm you, but to give you a hope and a future.

He isn't promising 'easy.' But rather that He knows BEST....and will never let go!

Incision Issues

Well, we had a slight bump in the road (which is expected, I guess). The last of Caed's steri strips came off on Friday. We had quite the celebration! It meant that he could FINALLY swim again. Been a long *HOT* summer not being able to do that. He was absolutely giddy on Monday when we told him 'today was the day' he had been waiting for!

One more item on Caed's summer to-do list was of course go to JoyLand. (Lubbock's amusement park) We had canceled several weeks prior because we knew the rides that Caed would want to go on....might be too rough. I felt it would be cruel and unusual punishment taking him there, and him having to watch everyone else ride the rides he loved so much. And making him settle for the carousel and train! So, we canceled only a few hours prior. This week, more cousins were in town, so we thought JoyLand would be perfect timing (since all steri strips were gone).

However, looking at his incision, we could see one section that just didn't look right. We began putting Neosporin on it a couple of times daily and watching it carefully. Yesterday he came to me lifting up his shirt. He knew something wasn't right. Sure enough....that troubled section had opened up a little bit. We tried to reassure Caed all was fine, but secretly talked about the need to get it checked out. Simply heading BACK to a doctor (any doctor) would sky rocket his blood pressure. Even more so, we knew his heart would be broken having to cancel JoyLand again!!

We wanted to avoid the ER simply because we didn't want to pay $100 for a couple of steri strips. The plan was to head to a clinic instead. My sweet neighbor did some leg work for me calling around and they told her they wouldn't see him (due to it being a recent surgery and an open wound.) I wanted to cry at that point. Going to a clinic is one thing. Going to a hospital is entirely another. I secretly packed a small bag full of things we might need if they decided to keep him overnight. Just something you always prepare for when you take 'these kids' to a hospital. You never ever know! Even though deep down...I knew it just had to be an easy fix.

When we pulled up at the ER, Caed looked around...saw the sign and began crying. It took me forever to pry him out of the car. He was absolutely scared to death. He kept saying over and over...."I don't want to have surgery again!!!.....I don't want them to hurt me!" I tried to talk to him. Told him they were simply going to put another "band aid" on his incision. (and prayed like crazy for that to PLEASE be the case). Finally, Caed got out of the car, but then he wanted to wait for his eyes to "dry up." He did NOT want anyone knowing he had been crying. The entire 2 hours we were there, enormous goose bumps covered his arms and his eyes were full of tears (ready to fall at any time). Once again, he put on his brave face (even though I knew he was dying inside).

The ER doc was one we had seen many times before which was very comforting. He said that particular section was where Caed had been cut on 3x prior. It made sense. The top section was new. It healed beautifully! They weren't able to push it back together before putting on new steri strips. The skin has simply lost all elasticity. So, our prayer is that it will heal up on its own and for zero infection! ER doc was insistent that we come back immediately if we saw more 'oozing or redness.' Our plan is to go see his Lubbock surgeon next week for a follow-up. I feel good having not only a surgeon look at the site, but one that has had experience with Caed. Hopefully, it will be closed up and healing nicely. Telling Caed about this appointment with Dr. G will be another story...... Pray for that!!!

I sat Caed down this morning and together we brainstormed things he probably should avoid for 7 days, and then a list of things he was free to do. I told him breathing and walking were probably fine. ANYTHING else is not allowed!! (haha just kidding....kinda) He has asked me many many times today "What if...." questions. At one point he even asked "If my incision doesn't close up, will I die....?" I just wanted to cry for him. He has been through so much (unexpected) this summer. And now this. Even though this is simple. We are home. Nothing life-threatening. But, sometimes the emotional issues are just as tough (or tougher) as the physical ones.

We have 3 weeks left of summer. Our swimming days are out....again. At least for a week. JoyLand days are out...again. At least for a week. Praying this new bump in the road is resolved quickly and Caed can salvage what little of summer fun is left. His baseball team is having a swim party soon, and Caed was also wanting to swim for his birthday (also coming up). As my cousin said today...."HEAL BABY HEAL!!!!!!!!!!"

That is our prayer....

Doing GREAT!!

Caed is doing wonderful! His emotional "issues" are getting fewer and farther between. Typically they happen during bath-time. He is terrified that something is going to happen if he gets even ONE drop of water on his incision. We have tried and tried to explain this to him. He doesn't hear us. Caed has not been allowed to swim for almost 4 weeks. 2 of his steri-strips are almost off. The other 4 are still stuck on pretty good. Ugh! Partly due from his EXTREME fear of it getting wet.

(we are making tremendous progress: I talked him in to running through the sprinklers yesterday. He questioned me 80x...making sure everything would be ok. I reassured him. Already today, the kids are back out running through "Rain Town." haha)




I'm not certain of how Caed got these "broken" 3D glasses. (I think Uncle Mark probably had a hand in it) But....the child hasn't taken them off. At first, we thought he was doing it to be funny. We soon realized nope, he truly thinks he looks cool! (someone made the mistake of telling him he looked like Joe Jonas) I looked down at him in church Sunday and saw THIS! I about died. I'm sure the preacher was a bit distracted seeing Caed staring back at him from row 3! haha




Uncle Mark and Hayden got Caed ready for a game of hide-n-go-seek IN THE DARK...outside!





Reagan had a fun weekend celebrating her 11th birthday. She had a sleepover with 7 other girls. They had SO much fun! Stayed up til 5am.....until "Mean Mama" made them turn the lights out and get a little bit of sleep.




Caleb has enjoyed finally having both Reagan and Caed home to play with each day. He is Caed's shadow...

101

That's the number of questions we are hearing each day from Caed concerning his recent hospital stay. Quite honestly, they completely catch me off guard because they occur at very random times during the day. While walking the aisles at Dollar General I was told...."Mommy, I want you to tell me the truth! " (talk about a statement that makes a parents' heart skip a beat) I thought I was about to be hit with the infamous Santa Claus inquisition. I was ready for that one. Been there-done that. Nope. He proceeded to ask a question about his surgery. Ugh. I reluctantly answered as truthfully as I could without scaring him. That was apparently good enough, and he was on to search out the toy section. There have been so many questions just like this that come at very odd times throughout the day. Some of them are things that I honestly didn't even remember happening.

Caed is definitely doing better though. He has been sleeping through the night the past several nights. I guess he is just processing it now through all his questions. It saddens my heart that he even has to go through this, but I know it's just part of the process. And unfortunately....it's life.

This too shall pass..............

"I'm scared....

....something else is going to happen."



These were the words Caed said to me last night before bedtime. He was crying as his entire body trembled with fear. I tried desperately to calm him, reassure him all was going to be ok; however, I realized at that moment, it was deeper.

Caed has had a rough several days. He has woken up many times during the night (or while napping on the couch) crying out for me. Our first response is to ask him WHERE he is hurting. Oh God! Can this really be happening again? He never responds to us. Just continues crying. A few times he looks at us with eyes that are completely glazed over. Then when questioned about it in the morning, he has zero recollection of what took place.

One of two things might be happening: Our first assumption is that his hernia is beginning to hurt. He is currently on medication for it, but the drug the IRP team wanted him on....was NOT what the insurance company agreed to (for now). If this indeed is hernia related, I know we can begin the process to get the "big gun" drug approved. However....this might be something entirely unrelated to any kind of physical pain. Caed experienced night terrors on and off after the '2008 Crisis' as well as Post Traumatic Stress Disorder. I in no way am comparing that to the last 2 months, but am wondering if some of his fears (from ALL that he has gone through this summer) may be the cause of the night waking. ??? I truly have NO idea. We are still on the fence.

I must admit however (even though the shingles kinda blew my 'everything's fine!' cover), Caed's words last night mirrored my own heart's cry. What if something else happens? What if the next shoe falls? I am scared.

This morning in church our pastor spoke on the sovereignty of God. There were many things I got out of the sermon, but one in particular was that.....my God is BIG, no HUGE! His thoughts, plans, and purposes are completely incomprehensible to us. But they are good. I don't know what's going to happen. To Caed. To me. To anyone. Worrying about it though accomplishes nothing. It doesn't change the outcome....only robs you of living life and ENJOYING all the blessings God has graciously given.

Thank you for praying for Caed (and our family). We have been absolutely overwhelmed at ALL the love and support shown to us once again! You have blessed us!! I guess I shared all this for you to know how to pray specifically. Either we have a painful hernia to get under control or a little boy who has some tough emotional issues to get through. Or BOTH!

You will not fear the terror of the night, nor the arrow that flies by day.....If you make the Most High your dwelling - even the LORD, who is my refuge - then no harm will befall you, no disaster will come near your tent. For He will command his angels concerning you to guard you in all your ways. (Psalm 91:5, 9-11)

Happy 11th Birthday

...to our July 5th Firecracker!!

Reagan, it's hard to know where the years have gone. Seems like yesterday you were having to be lulled to sleep by the VACUUM CLEANER! (vacuum off = screaming / vacuum on = quiet) Needless to say, back in those days, my carpet was spotless! You were a very strong-willed (wild-haired) little baby/toddler with a princess-filled imagination. You have grown into a beautiful young lady with a caring, sensitive heart. Daddy and I pray that you continue to follow Jesus and grow more in love with Him everyday. HE has big plans for your life! It won't always be easy, fair, or the most fun......but TRUST HIM. His ways are always BEST...and HE will pour blessing upon blessing onto your life.

PROVERBS 3

^1-2 Good friend, don't forget all I've taught you; take to heart my commands.
They'll help you live a long, long time,
a long life lived full and well.

^3-4 Don't lose your grip on Love and Loyalty.
Tie them around your neck; carve their initials on your heart.
Earn a reputation for living well
in God's eyes and the eyes of the people.

^5-12 Trust God from the bottom of your heart;
don't try to figure out everything on your own.
Listen for God's voice in everything you do, everywhere you go;
he's the one who will keep you on track.
Don't assume that you know it all.
Run to God! Run from evil!
Your body will glow with health,
your very bones will vibrate with life!
Honor God with everything you own;
give him the first and the best.
Your barns will burst,
your wine vats will brim over.
But don't, dear friend, resent God's discipline;
don't sulk under his loving correction.
It's the child he loves that God corrects;
a father's delight is behind all this.

Praise You in This Storm

I have so much I want to write about, and yet for the last several days, I have felt completely paralyzed. I don't even know where to begin....

The last 6+ weeks have been a gradual nightmare that I begged God to please stop. The amount of pain and the severity of Caed's attacks got to the point (up until hrs of boarding the plane to NE) that I couldn't continue sitting helpless at his feet watching him suffer. I was desperately needing to cash in my 'good actress card.' Even though the sbs, colonoscopy, and endoscopy all showed his bowel looked ok (minus the finding of the hiatus hernia), we still felt it had to be Short Gut related. As I began explaining to the IRP team at UNMC what the past 6 weeks had been like for Caed, immediately Dr. M asked, "Does Caed still have his gallbladder by chance?" Gallbladder! What in the world are you talking about? No other organs need to be discussed here. ONLY bowel! I knew during Caed's initial surgery 3 yrs. ago, the surgeon did remove his appendix (along with the majority of his intestines). But, I didn't remember them ever mentioning the gallbladder. They immediately scheduled an ultrasound to find out, as well as keeping a close look at the pancreas. Caed was very scared about this "new test, " but later informed me it was now his favorite! Mine too. The dark, cool room.....with the hum of the machines lulling you to sleep while someone gently oozed warm jelly all over your tummy and back. It lasted almost 2 hrs, and Caed dozed off more than once. Todd and I of course were feeling torn. Nothing wrong with bowel = GREAT NEWS! A problem with entirely new organ = sick to our stomachs. Obviously, we knew between gallbladder and pancreas, we definitely wanted it to be gb. At this point, I knew our 3 day scheduled trip to UNMC was going out the window in a hurry. I was alone and scared.

Meanwhile, while all of this was going on with Caed......our dearest UNMC friends from NZ had just lost their 5 yr. old daughter. This wasn't supposed to have happened. They had journeyed long and hard to get to the US for Aria to have a shot at life. (multi-organ transplant x2) God had done amazing things in this little girl's life. He indeed had preformed miracle after life-saving miracle in her 5 short years of life. My heart was absolutely broken. Broken for a hard fought battle that had been 'lost.' Broken for this amazing Dad who had to let his baby girl go. And broken for a Mom who held her one and only daughter in her arms as she went to be with Jesus. This was my friend. I couldn't even fathom the pain, the grief, the hurt, disappointment....coupled with the joy, HOPE, and unspeakable peace they were dealing with. The timing of our trip to NE was 100% providential. Our apt wasn't scheduled for 3 more weeks. But, due to the (gallbladder) attacks Caed was having, it was imperative we get there ASAP.

God knew.

He knew 4 friends needed each other. He knew we each needed comfort and encouragement. We needed to say good-bye..........

I needed more last week. I needed a reality check. I needed perspective. As much as my heart was hurting for Caed, I needed to be reminded of families who would long for a simple gallbladder removal surgery. My fears then turned to thankfulness. I was thankful for God's mercy on my son. Selfishly....thankful for my 'normal, healthy, thriving 7 yr. old.' Sure, Caed has issues, chronic ones...but he is alive. Guilt soon began flooding my soul. WHY GOD? WHY?? Why do you spare some children and allow others to suffer.....suffer hard? We will never know the answer to this question and many others like it this side of heaven. But, maybe I got a glimpse.....

Aria's funeral was streamed live on the internet. Chills raced down my spine as the picture loaded and I could see my friends sitting there on the front row. Across thousands of miles and many time zones. There I was. (Seemingly) sitting right up in the balcony overlooking the congregation below. Puddles of tears formed on my kitchen floor. My heart was exploding for Anita and Hamish. I simply couldn't imagine the pain they were feeling at that very moment. The denial. And yet....the tears fell harder and longer as I watched these precious 2 raise their hands and sing PRAISES to their Holy, Faithful, Loving God. He was there! He was holding them up. And He was TRULY honored in that service. Maybe I had it backwards. Maybe Aria was the one that was 'spared.' And Caed is the one that is still left to suffer on this earth awhile longer. Either way, God knows and He has a plan. A plan that will bring Him the most honor and glory. We PRAISE Him for Aria's life. I think it's impossible to count the number of people (ALL over the world!) that God lovingly allowed this little girl to touch.



Hamish and Anita have become our life-long providential friends. The story of how God led us to each other is.....amazing! We don't know when/where our paths will ever cross again (face to face), but the unlikely friendship that was formed 2 years ago.....will last forever. We love you both SO very much!!

Now, back to Caed. The ultrasound showed everything to look great....except the gallbladder. It was enlarged, contracting, had very thick walls, and just didn't look right. So, what do you do? Take it out! I knew this was a very common surgery and people could live normal lives without them. However, Dr. M decided against doing it laproscopically and instead would cut on Caed's original incision. He wanted to take a liver biopsy (his numbers looked good, but just something you want with these SBS kids when you get a chance). Todd was able to fly up the Thurs before the surgery and stay through the weekend. Such a blessing! I was really nervous about telling Caed. This time he wasn't in shock.....bleeding internally....and close to death. We had 2 days to think about it....dwell on it, and allow our minds to go to places it shouldn't. Memories, awful memories flashed in my mind continually. We hadn't experienced "easy" surgeries and hospital stays. My mind couldn't fathom what that would be like with Caed. But, we simply had to trust God and remind ourselves Caed was still being held ever so tightly in His arms. He hadn't let go...even 3 years later. The day of the surgery was very difficult. Caed was now almost 8 years old. He had past experience and knowledge of things that 'happen' in hospitals. He knew being put on a gurney was a scary thing. He knew he would be wheeled away....alone.....with strangers, and that pain would occur. He was SO brave. Fear filled his eyes. He whispered for us to please help him. To make it all stop. And continued saying over and over how he just wanted to go home. 'Good actress card' had to be pulled out yet again as I remained cool, calm, and collected and reassured Caed this would be 'quick and easy.' (even though my heart was screaming the exact same words as Caed)

The surgery was successful. Lasted almost 2 hours. Pain did indeed pay Caed an uninvited visit over the next several days, but he was so strong and brave and did exactly what the drs and nurses told him to do. As Caed recovered those next few days, I caught myself just starring at one amazing little guy. My heart was so very proud of the person he was. He has had to endure so much these past 3 years, and yet you would never know it. His personality is magnetic. And I knew God had such wonderful plans for his life. At the same time.....my heart was also so very broken. He is 7. These past 3 years have been filled with so many tests, procedures, surgeries, medications, tubes, lines, sticks and pokes. What will be next? Yes, this surgery fixed our current problem, but will it just continue...? One problem after another for the rest of his life? Again, thankfully I don't have the answer to that question. Only ONE person does, and it's imperative at times like these we don't forget that. That ONE person has promised that He has plans for Caed's life. Plans to prosper him. To give him a hope and a future. We have to cling to those words. To trust.

Caed is most certainly our Rockstar! He is healing wonderfully. Back to his old self...minus a little slower and hunchbacked. The awful pain that he had been suffering with the past 6 weeks....is GONE!!! Praise God! We truly hope the gallbladder was the cause and now is taken care of. Caed will need to 'take it easy' the rest of the summer which will be a chore in itself for Todd and I. (please pray for us! ha) I think Caed understands....but again, he's 7.

And by the way....we have learned that this was Short Gut related. Over the past week, so many of our SBS friends have confirmed this as their children also had to have their gb's out at some point during their journey. I don't remember the entire anatomy lesson Dr. M explained to me...(or was it actually that most of it went over my head?), but it has to do with the ileum, bile salts, and gallbladder. Since Caed does not have his ileum (section between sm and lg bowel) anymore.......the gallbladder most always goes 'bad.' Dr. M said when he performs surgery on these kids for whatever reason, he always removes the gallbladder (even if it looks perfectly healthy). The surgeons here in Lubbock who took out Caed's bowel initially were not looking long term. They were not thinking "short gut life." They were solely focused on saving Caed's that night. And for that, we are thankful.

We are home. Ready to finally start our summer. I, on the other hand, came down with a case of shingles while in Omaha. I wonder how that happened?? ha I certainly have not been under any stress this past month.... I am hurting pretty bad, and medicated.....but once again questioning God's timing. ;) This too shall pass.

Here are a few pictures from Caed's homecoming Wed night. As my dad, Caed, and I made our way home from the airport, this is what was waiting for us. It was SO sweet. 12 friends/cousins painted signs for Caed and hung them on the bushes, front door, and walkway. Tears fell again that night. I was reminded of God's compassion and how He provides just what we need when we need it most. This was simple. Created by children. And yet exactly what my heart needed right at that moment.

We have been overwhelmed once again at the outpouring of love and concern for Caed during this time. Our hearts are FULL! And we are truly humbled by the thoughtfulness and generosity of so many. Our cup runneth over......






I will leave with Caed's theme verse:

Consider what God has done. Who can straighten what He has made crooked? When times are good, be happy: but when times are bad, consider: God has made the one as well as the other. (Ecclesiastes 7:13-14)

....which is how we can still praise You in the storm!

Post-Op

Caed's surgery lasted about an hour and 1/2. All went well. Dr. M cut on Caed's original incision, removed gallbladder, took liver biopsy, and cleaned up a few adhesions. Caed is recovering as expected. Today was hard, but he has been super brave!

I have MUCH I want to write about.... This week has been tough. REALLY tough! Foremost in our thoughts is Anita and Hamish. They lost their little girl on Monday. We had a sweet time together on Thurs, but my heart still aches so badly for them. Then....everything Caed has gone through. This surgery was not on our agenda when packing our bags for Omaha. I am thankful for it, but just wasn't prepared.

I will write more.....when I can. THANK YOU for all your prayers!

Surgery #4...

is set for Friday. This one however, should be MUCH less "traumatic" than the last 3. Caed will have his gallbladder removed. They have searched for every probable cause to his pain, and feel this is it. Everything else has come back "normal." His gb doesn't look right, is contracting, and has very thick walls. Not sure if he has any stones....they weren't able to see.

Caed knows NOTHING of this as of now. He gets so scared by the dreaded "S" word, so I am trying to keep him as happy as I can.....for now. I am not sure what time it is scheduled for, but will let you know. Surgery is surgery....for Mommies and Daddies having to sit out in the waiting room. I am still VERY nervous, but know God is still in control. I mainly just hate that Caed continues to have to deal with issues. (pain, meds, surgery, scopes, xrays, trips across the country to see docs, etc...) I shouldn't complain. Just long for complete normalcy for him. Tough seeing these kids go through all they do. (and Caed is one of the "healthy ones.")

Todd will be flying in tomorrow....which I am SO relieved. It's been tough being here alone with all the issues Caed is having. Once Todd has to go back to work (Mon).....my dad will come and help Caed and I the remainder of the time (and to get home).

I really dislike updating this way. Short and sweet. But....knew I needed to get this info out. It's truly a praise!!! And Lord willing Caed will be feeling MUCH better once it's out. Definitely worth it. Thank you again for your prayers!

We made it!

This post will be short and sweet. I have a very wiggly impatient little boy sitting beside me that wants "to go!"

Met with docs this morning. It was a different clinic visit than we've ever had before. Typically there is a game plan or "just keep doing what you're doing..." discussion. This time there were lots of questions and lots of possibilities thrown out. We are so grateful to finally be here and know it will only be a matter of time before we get this thing figured out. We are starting at "A" and will continue on until a probable source is found. Yes, Caed does have the hiatus hernia. Yes, it most definitely could be the #1 problem. However...some of his symptoms aren't so black and white. That's why they want to rule out anything else first. Caed is scheduled for an ultrasound in an hour primarily to see if he still has his gallbladder. (unsure whether it was taken out at initial bowel resection) We think he probably does. Also will be looking at pancreas. If it is one of those...they could be the cause for GREAT pain. So....we will start some med for hernia....give it 2-3 days. Look at ultrasound, and go from there.

Caed had only pain spell during the night last night. NONE today...thus far. If/when he does...we are to immediately go draw labs (pancreatic enzymes). Very nice part of staying here at hospital.

I will update more later. THANK YOU a million times over for all the encouraging messages and all those PRAYING for Caed. I have a tremendous story that happened yesterday (travel day). Will save that for another time. Just know your prayers are being HEARD...and answered! We love you all!

I Love You

Today was HARD.....

Caed awoke at 5am crying in pain. That pain lasted until 2pm! I unfortunately had 3 C-Sections when giving birth to my babies, but Caed's pain reminds me a lot of what a woman in labor experiences with contractions. You can almost time Caed's next spell to the very minute. The worst ones of course are more frequent and greater in intensity. Sometimes, however...he can go every 30 minutes between spells. Today seemed almost constant...

He had a birthday party to attend this afternoon and kept crying to me how much he wanted to go. I knew he did! This party had been anticipated for weeks. After one of Caed's spells....I knew we had a very short window to jump in the car and get to the party before the next one would hit. If it did.....we would go inside (it was at a family member's house, so I felt very comfortable doing so). However, the next one never came. Caed did wonderful!!!! He was completely normal again those 3 hours. SO good to see! Once we got home, he went into the kitchen and had a glass of milk. I didn't think a thing about it. Caed loves milk....like his Mama. About 20 minutes later, another spell hit. This time lasting the next 4+ hours. A grand total of about 13 hours in all today....hurting.

I honestly can't describe the feelings I have had the past 2-3 weeks, but primarily the last 5-6 days. Memories of the worst time in my life keep flashing before me. Caed is crying....I am right there beside him rubbing his back, his head, anything. I am drowning in helplessness. He is BEGGING me to fix it with tears streaming down his cheeks. Now...fast forward 3 years, life around us has changed. The setting is different. The characters have gotten older. And yet the main plot still seems very familiar. Reagan is now a pre-teen. yikes! She understands more (but not enough) and is scared. A few nights ago, Todd was working late, and Caed had the worst spell(s) to date. I was panicked here by myself with all 3 kids....and one I was certain would be making a trip to the ER. When I awoke Reagan, she knew. She could hear the cries. The screams. She immediately grabbed my neck, hugged me, and asked if Caed was going to be ok. Caleb...... (now a BIG boy) is learning. He has been my nurse's aide for several months each night priming Caed's pump. This little 3 yr. old can work it, and gets very upset if it's done without him! This week he will sometimes come in the bathroom with Caed and I (during a spell) and sit and kiss his brother's leg or arm. I have overheard Caleb talking to himself while playing, telling "someone" about his big brother that has a hurt tummy.

I don't like where we find ourselves currently. Caed was the IRP "Rock Star!" He obviously has had his issues (post NE), but NOTHING like this. Sometimes the IRP docs would ask us...."now WHY are you guys here, again?" It was a wonderful feeling. Caed had overcome SO much! I keep reminding myself of that and try to believe everything is going to work out. It may take some trial and error. It may take some time. But, we WILL get this figured out! God has proven Himself faithful over and over and over and over......He hasn't changed.

Tonight as I was putting Caleb to bed.....he asked if I would snuggle with him. Seems like a sweet request. Well, you have to really know this child to know he doesn't "snuggle." He was asking that because he didn't want me to leave. His top bunk buddy wasn't there. (sleeping in our room) Instead of snuggling....I began singing a song to him. One that I sang to all 3 of my kids when they were little. After I finished, he asked "what does 'I love you' mean?" ha Again, I knew this child had a masterminding scheme to get me to stay longer. I sat and thought. And honestly found it difficult to just spout off an answer. Finally, I said, "Caleb, it means I am SO thankful that God gave you to me." That was a suffice enough answer apparently because he said "ok" and rolled over. But, it wasn't for me. I sat staring at this child and was overcome with a thought. When I found out I was pregnant with Caleb, I honestly was devastated. I had a boy and a girl....and our family was complete. So I thought. It took several months for me to fully grasp that this was going to happen whether I was on board with it or not. 3 weeks after Caleb came into this world, my family was ripped apart, turned upside down, and the suffocating "earthquake" that followed, was almost 'too much.' However, it was in those times...the darkest moments, that little baby (clueless to our trial) brought SUCH light! God knew. His timing was absolutely 100% perfect. I couldn't see how this 3rd pregnancy at age 36 could possibly be a "good thing." It was a HARD 9 months, and I couldn't see beyond the day to day. I couldn't see the big picture.

That's what I was reminded of talking to Caleb tonight. I don't like what Caed is going through. I can't see how there possibly could be "good" brought from it. (even though I witnessed first hand how HE did 3 years ago.....oh! how quickly we forget and doubt) All I have to do is look at Caleb. That little firecracker is a reminder of how HE KNOWS WHAT HE IS DOING....We are not supposed to understand it all. We are not supposed to figure it out ourselves and "fix it." It's ok to ask questions. It's ok to cry out to Him! To BEG Him to stop the pain... He will. In His time, and in His ways.

HE makes beautiful things...out of dust.

Perspective

Quite honestly since I discovered Facebook, my blogging days are few and far between. I updated several times the past few days with everything going on with Caed, but I do know several of my friends and family members are not on fb...so I apologize.

Yesterday's "bowel prep" was excruciating....as usual. Caed was super excited to learn he could eat Popsicles for breakfast and as often as he wanted throughout the day. But, of course by 10am....he was already fed up with Jello, chicken broth, apple sauce, AND Popsicles! It was a long day for poor Caed, but we eventually got through it.

This morning we got to the hospital bright and early....went through the normal admission procedures, and Caed honestly did wonderful. In his mind, we were coming for "one picture." I didn't have the heart to tell him the truth. And felt the less he knew, the better off he would be. Everything was going as planned...until the anesthesiologist (which we had many times before and LOVED!) came in and started telling Caed in detail what was fixing to happen. Caed's eyes suddenly filled with absolute terror! Although he was scared to death, our brave boy never shed a tear the whole time at the hospital. Obviously watching your child as they "go under" is never fun, but we had complete confidence in our GI doc and the team that was with him. I was reminded today HOW MUCH I love that Dr. H always has Christian music playing while the procedure is taking place. HUGE bonus points with Mom & Dad!

Every time Caed has had a scope (upper), the GI docs always come out laughing and each begin by saying the same thing: "Why didn't you remind us about that stomach?!?" (it was twisted up in the initial volvulus and honestly reminds me of the silhouette of a Thanksgiving turkey) It is always very difficult to move the endoscope through. But, with God's hand....Dr. H was finally able to get it.

Overall, the results looked very "normal." We are however still awaiting pathology results on several biopsies taken. There was one problem area found.....a pretty good sized hiatus hernia. This most definitely could be the cause of the nightly pain Caed has been experiencing, but....unsure until we get all results back.

Caed and I will fly out for NE on Monday morning and meet with the IRP Team on Tues. Remember we had told Caed (long ago) that this trip to NE would be super easy. Just blood draws and dr. visit. Todd and I felt sick these past 2 weeks thinking that would not be the case as Caed would have to have the "full meal deal." Praise God....we got everything done here at home (which will be sent on to NE), and now Caed's UNMC visit can still remain "easy."

We feel very relieved to have this particular test out of the way, and also for a possible answer to his pain issues. However...there is still some anxiety in my heart. When will I ever learn? That combination is always disastrous. I am trying desperately to think we will just treat it with some kind of drug....prop his pillows up every night...watch what he eats in the evenings and what time he eats....and on and on. I KNOW this is probably very silly. So many of our friends are fighting MUCH worse things than a hernia. I don't want to sound petty. But, I also know how much pain my son has been in the past several weeks. It was absolutely awful to watch. He is 7. Will he have to live (deal) with it for the rest of his life? Again, I know.....so what? Lots of kids have to deal with 100x that every day of their life. I guess the part that got me was hearing that a surgical fix is out of the question for Caed....considering his bowel. Not that I am wanting to rush him into any surgery, it's just the reality of this syndrome. Don't mess with it (bowel) unless absolutely necessary.

I will stop my Mama-sulking now.....go on to bed....and be thankful. Thankful all 3 of my kiddos are asleep in their beds. Thankful for the last 2 pain-free nights. Thankful Caed will (Lord willing) be at a swimming party tomorrow afternoon jumping and splashing and laughing....and doing "flip-twists" off the board. I have been reminded unfortunately of hospital life this week. Just the few short hours we spent in various parts, brought back a flood of emotions and memories. I'm afraid I got comfortable these last couple of years. Comfortable in the day to day grind....going and doing....running in circles trying to keep up. It just takes one episode. This minor "setback" we've experienced the past month has helped put things in perspective again.

Gosh, I love my little boy! Just trying to put Caed into words....well, it's pretty much impossible. He's special. He's unique. He somehow tugs at people's hearts, and he's been kept here for a reason. I could probably name you 1000 of them. Although, I can't help but think there's more. Something bigger. Something I can't even wrap my finite brain around.

Caed, you WILL get through these current issues. And Lord willing....HE will continue pulling you through the many, many more that will probably follow you. But, you are strong and brave and remember....the ONE who holds you in His hands....is faithful and sovereign and wise and good. Whom then shall we fear? He will never let go.......

Looming questions...

Friday night Caed went the whole night (HOOKED UP...even!) without a single pain spell. First time in over a week. We were SO encouraged, and so thankful for all of you praying on his behalf. This morning, however....he awoke about 5:30 whimpering and crying out for us. We went through our normal routine, and after about 10 minutes, he was back in bed. It wasn't 30 minutes later, we heard him crying again. This pattern continued (like clock work....every 1/2 hour) until around 10:00a. Todd and I were completely stumped.....and of course distraught. He then had a couple more spells throughout the day. Overall, however, it wasn't too bad. (we've certainly had worse!) He made himself a pallet right beside our bed tonight....and we decided not to do feedings. His little gut definitely needs a break and his body needs REST! We will be in touch with Nebraska obviously tomorrow to see what they think. His sbs is scheduled for Thurs. here at Covenant. I'm assuming we will try to wait that out, considering he does ok between now and then.

SO many thoughts are running through my head. Most of which I am trying to ignore. (coming from satan) It's almost funny however, the verses I am coming across or the songs that "by chance" are coming on the radio. A couple in particular I like to call "Caed's songs." They are by David Crowder and his CD was in our car the day/week all this first happened to Caed 3 yrs ago. These songs hadn't made it to radio yet...but they were played over and over and over as I would sit in the parking garage of the hospital (hitting the repeat button).....desperately trying to pull myself together before going in to see Caed each morning. In fact, not sure I have ever heard them on the radio until just a few weeks ago. I kinda have to laugh at that....it's literally like God is sitting in the passenger seat of my car saying..."I haven't left! I'm still here! And I'm still holding your little boy in my hands. Nothing is happening to him that I am not in control of. This ("setback") may have surprised you....but not ME!"

A "Blessing in Disguise" is truly my main prayer these days. I don't know what on earth is causing this pain in Caed. And WHY now? He has been as "normal" as can be for so long. He's one of the "healthy ones"....according to the IRP Team. What is different? What did I do that may have caused this? The answer to these questions continues to be nothing. We desperately want answers, but the means by which they will come.....not so much. Our trip to UNMC this summer was supposed to be easy. Caed was doing SO well....they didn't see the need in exposing him to any more radiation (through an sbs) than absolutely necessary. We had told Caed this (several months ago), and he remembered. Recently, he asked again, "...so when we go to NE, all we have to do is blood draw and talk?" YES Caed! That's IT! Then, we can go to the zoo and do all those fun things you love so much in Omaha. ......my heart breaks for him now! Caed is almost 8 yrs. old. It's been a long time since he has had to do a lot of the "harder" tests. 3 years ago, we were 100% immersed in everything hospital life offered. Those "tough tests" came weekly....if not daily for MANY months. Now....we have experienced a very healthy span of about 2 years. This is a learning experience for us.....as well as Caed. These tests will come again....and again.....and again during his lifetime. I believe he will have those "healthy seasons" and then naturally have bouts of short gut issues. I sat thinking about his future wife tonight. (bless her dear soul...haha!) But the fact that she will have to learn SBS. She will one day (Lord willing) be the one that is with him during the x-rays, scopes, etc..... I KNOW the Lord did a miracle in Caed's little body! No one will argue that fact. But...he still has only a fraction of his small bowel left. Anatomically speaking......he will have "issues" the rest of his life.

What seems scary to me now contemplating the possible source(s) of the pain, may actually be God's way of showing us something incredible! Perhaps by uncovering some great blessing..... I don't know. I honestly have NO idea how the next few weeks are going to play out. (thank God!) Will it be an easy fix with some ABX for bacterial overgrowth? Or will, dare we say....surgery be needed? There is only ONE person who knows the answers to those questions, therefore I desperately need to stop trying. We need to take it one day (night) at a time. Count our blessings....they are as many as the stars, and ultimately TRUST in the One who holds it all together!

As the song says....."He ALWAYS comes through!!!"