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.