The Turnaround

The 24 hours after our discharge were probably the worst we have seen since surgery. Either Caed was asleep (from meds) or crying in pain. We had been transported back to a time when that's all Caed did for weeks at a time. Todd and I were speechless. What was the cause? What do we do? By about 11 this morning, I was headed for my phone to call the docs. That's when it happened: Caed has been fighting the normal post-op cough pretty badly. He just couldn't shake it. I had 3 c-sections and remember vividly the horrible pain that came when needing to cough. The nurses would always say to grab a pillow and hold it tightly against the incision. I instead wanted to grab a pillow and SMACK them on the head! So, I knew (somewhat...I had stitches rather than left OPEN) the pain that Caed was having with each cough. This morning, he started crying and coughing....and then threw up really big. We hoped that would help.....and it did.

I left the room for awhile and when I walked back in...a huge surprise was waiting for me. Caed and Todd were sitting at the table and were working on some Legos. He started talking (really for the first time since surgery) and just seemed overall that he had been given great relief in pain. For the remainder of the day, he continued to act more like the Caed we all know and love. He walked more (although very slow and hunched over) and finally really ATE! We took several walks around the hospital (with Caed in wheelchair) and even went outside to get some fresh air. His spirits have been enormously lifted, as well as Todd and I's.

Traveling tomorrow is still going to be hard. 4 different airports and 8 hours. I think if we can stay on top of his medication and make sure we have a wheelchair, we should be ok. It will be hard on him, but hopefully manageable. Yesterday I wasn't sure it would even be possible. Thank you once again for praying for this situation.

This hospital admission completely caught us off guard. Nothing about the last 4 days was what we had expected. This was supposed to have been 'easy.' Tube removal and revision of incision.
However, with what Dr. M discovered while working on incision, along with the decision to leave wound open....took us down a very different path. Ultimately, a good one, but hard.

Today also marked my first solo dressing change. Caed cried obviously, and Mama and Daddy held their breath. Exhaling only after it was complete. He asked Todd if he would cover his eyes for him. Caed is normally one to always want to watch EVERYTHING in detail being done to him. After Thursday's shock of our lives....he may never want to see anything ever again. I don't blame him. I will still have nightmares on that one. Caed's incision(s) are looking "good." Tough to really say that as a Mom. But, comparatively speaking....yes, SO much better.

We have had 4 "bad days." And thus far, 1/2 of a good one. Amazing how you can experience the lowest of lows....and the highest of highs all in 1 single day. We are praising God tonight. He not only heard Caed's cries for help, but ours as well.

...the healing is just beginning

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 one as well as the other.
Ecc. 7:13-14

Pain

....that basically sums up Caed's day today. He has not been himself and has cried at least 50% of the time. Just walking a few feet does him in. He can barely make it. He was moving better the day of and after surgery than he is currently. We are guessing since they have begun "messing" with his incision (dressing changes), that is the main cause. (and also because he had some high powered drugs in his system helping out after surgery that we no longer have access to)

Speaking of his incisions, today was a good day for Todd and I. We had hit an unexpected low yesterday after the 1st 2 changes. There was just so much blood. Come to find out, that was not normal. They were concerned with him bleeding out....so this morning Mercer's PA wanted to take a better look herself. We all held our breath as the gauze was pulled out. Wow! Once again, shock hit Todd and I, but this time in a positive way. The main difference was the amount of blood. Don't hear me wrong, there is still something very wrong seeing inside your little boy (2 places), however...we were able to look at it simply from a wound standpoint, and it looked so much better. Thank you for your prayers specifically in regards to the incision.

Our spirits were immediately lifted, and we were finally able to exhale. However the pain issue has now got us feeling deflated again. I guess we were expecting the same Caed post-op from this summer's gallbladder removal. He bounced back from that so much quicker. He is currently on the max dose of pain med.....but we are eager to see some improvement so we can begin the weaning process.

Despite the pain issue, we were discharged to the Lied Transplant Center (literally our second home), and our plan is to stay tomorrow and do nothing but rest up. We fly out Sun at noon, and spending all day in airports (post-op) can be really hard. PLEASE begin to pray specifically that Caed can have a much improved day tomorrow (pain control), and be able to "comfortably" get home on Sunday.

I look at him today and just want to cry right along side him. Tough reminders of painful days....not too long ago resurface. I received a text from my dad with a simple lyric from an old song: "He didn't bring us this far....to leave us." I completely agree and needed to be reminded of just how far Caed has come in these last 4 years. I know he will get through this too!

Don't judge a book by its cover

This was Caed's 6th abdominal surgery. You would think we've seen it all by now, but apparently not. Today Todd and I got a big surprise. We knew during rounds they would want to take the surgical bandages off and get a good look at the incision(s). Caed is always nervous with this part, but we gave him a big pep talk beforehand and reassured him it would be "easy." As Dr. M began removing the outer dressing, he told us in more detail what the incision looked like. He said he left them "open" to avoid more infection. With all the trouble we have had these past 8 months, he felt this was the best choice for ultimate healing. Todd and I agreed.

But, when the last layer was lifted off.....our jaws dropped. Definitely NOT what we expected. I had seen the g-tube hole many times (and hated it every time!), but the vertical abdominal incision proved to be WAY MORE than this Mommy could take. As they unpacked it, and we saw what lay underneath that beautiful white bandage...I felt like I was watching some Friday the 13th movie from the 7th grade. In my opinion, we might as well have been standing there in the O.R. It was truly one of the most horrific things I have witnessed over these past 4 years. I did not have the option of turning my head and running out of the room, but rather had to sit inches away and be given a crash course in open wound care. That in itself was uncomfortable enough. I did not go to nursing school for a reason. (I have been known to pass out in a hospital simply visiting others). Not only was it WAY too graphic....but it was on my baby! I literally had to block his face out of my view, and concentrate solely on the job at hand. The g-tube site (when tube was out) always reminded me of a gunshot wound. The other one looked as though someone took a knife and sliced him open. Deep. (which I guess is the reality) "Surgery" just has a nicer ring tone. Caed was scared. Giant tears filled his eyes and he whimpered several times, but was so incredibly brave. Today has been one of those days, he's been too brave. The nurse even commented and tried to explain to him it was OK to cry. It was ok to be honest with his pain level. He's absolutely amazing!!

After it was over, Todd went to grab some lunch, and I....melted. (in the privacy of the bathroom away from Caed of course). I couldn't believe what I was forced to witness. That image will forever be engraved in my head. An image that will be added to the long list of nightmares from the past 4 years.

Now for the 'good news'....this has to be done everyday, twice a day BY ME....for the next several weeks. I am fully aware it will only get better as the wound begins to close and heal up, and know I will slowly get used to it (just like everything else I've had to do over the years). I am reminded of one of my favorite quotes: "You don't know how strong you are until being strong is the only choice." That's it! I have NO other choice. It has to be done. But I know God will give Todd and I exactly what we need...each and everyday.

Today was tough. Emotionally for Todd and I. Physically for Caed. He did not have the day we expected. He has been overall pretty sad. Uninterested in just about everything. He did however get up a few times and walk. Currently he is having quite a bit of anxiety due to the next dressing change (coming up in the next few minutes). PLEASE pray for him. Pray for me. I am supposed to do it tonight (with assistance from the nurse). Caed will spend another night in the hospital, but our plan is to get discharged tomorrow. We will play that by ear as well. He just has not had a good day.

Thank you again for all your thoughts and prayers!!! We need them.

An answer was found!

This morning Caed was in an unusually good mood...did not seem the least bit stressed, but rather was very occupied with his latest obsession (learning to juggle). However as surgery time inched closer, he became very quiet. Never made as much as a whimper, but rather turned completely mute. The different doctors and nurses even commented several times at how impressed they were with his 'bravery.' Caed told me this morning as we were getting ready that it wasn't the surgeries that he didn't like.....but rather when they wheeled him away from us. I couldn't agree with him more. That part is very torturous.

The surgery lasted about an hour and 1/2. Dr. M came out and said he thinks he discovered the culprit to our stubborn 8 month long incision issue. Apparently part of his intestine became attached to the underlying tissue...and he also of course found lots of infection. We were completely shocked. But....should have known those ornery intestines had a role in it. We have high hopes though now that healing can finally take place.

Caed has been in quite a bit of pain since surgery. Dr. M had to cut (and dig around) more than originally expected since he was trying to find the cause of the incision trouble, but again Caed is being super strong. If we can get through these first 24 hours....he should be back to his normal crazy self in no time.

The "no feeding tube" really hasn't hit me yet. I guess since we haven't seen it or the other 2 incisions yet. Hopefully they will remove bandages tomorrow during rounds.

Thank you all once again for your outpouring of support during this time. LORD WILLING, this will be the last surgery for a very, very long time.

Now you see it....

....tomorrow you won't!


The reality of what is taking place tomorrow leaves me......speechless. Thoughts and memories are spinning wildly in my head of the past 4 years. Yes, that's right. Almost 4 years to the day. March 1, 2008. The day that changed our lives completely.

Or did it?

During my senior year in high school I was introduced to this "new doctrine" called the Sovereignty of God. It was exciting. It was mind-boggling. And yet brought abundant amounts of joy and peace over the next 17 years. Then it happened. That's when the rubber truly met the road, and we were tested. Did we truly BELIEVE what we said we did? Was God really in control of all things? Even the unspeakable...?

I remember like it was yesterday. The early early morning of March 2. We had been in the ER for many hours trying desperately to come up with a "cause" to Caed's excruciating pain attacks. Then....the surgery. 5 hours. 5 very long hours in the middle of the night. We were the only family left in the waiting room. A small group of 5-6 of us. At times we tried to be normal. We attempted small talk even though none of us were really interested. We got up and walked the cold, dark empty hallways. I remember going into the stall of the nearest restroom many times just to cry. To pour my heart out to a God who seemed a million miles away. Then, I would dry my eyes, walk out and pretend to be brave again. After Dr. G finally came out and explained what she found and ultimately was forced to remove, we stood in the hallway and watched them wheel him away. He didn't look like Caed. His face was abnormally swollen, a giant tube placed down his throat (breathing for him), and another dozen tubes/wires covering his tiny 4 year old body. Once we got to see him for the first time in PICU, they told us he obviously could not respond, but encouraged us to talk to him. Todd was wonderful. He was so sweet, kind, and loving and told Caed how good he was doing and how much he loved him. Then it was my turn. Awkwardness filled the dark little room. I didn't know what to say. This was not normal. How could I talk to my little boy and tell him he was doing good and looked good?....when I knew he wasn't. I couldn't look at his frail, trauma induced body. They were telling me it was Caed. It was not. I forced out a few words...trying to hold back the flood of tears that were ready to roll at the slightest blink of an eye. It was all so foreign to me. Completely unnatural and made me sick to my stomach. An hour later, our parents told us we needed to go get some rest (6 am). Since Todd's mom lived just blocks from the hospital, her house would be the ideal spot. Once we finally got there and got settled into bed (still wearing the exact clothes we had been wearing almost 24 hours prior), we lay there in silence. Our bodies screaming for rest (physical and emotional), and yet all we could do was stare intently at the ceiling. Stunned. Finally, Todd reached over and grabbed my hand and began to pray. I squeezed my eyes shut wanting desperately to tune out what he was saying. Hearing Todd pray like that only validated the seriousness of the situation we had unexpectedly found ourselves in.

Fast forward 50+ days. We were still in the hospital and Caed had just had his 3rd bowel resection. After this particular surgery the words "multi-organ transplant list" were brought up several times. A few days later, Todd and I were forced into a "conversation" that no parent should ever have to experience. I have blocked out most of what was said that awful night....except 2 little words. "Burial plot."

Since that day, we have experienced many highs and lows, and have plenty of material for our very own "made-for-tv-movie." (but then again, who doesn't these days?) To sit back and contemplate it all.....where we were 4 years ago, to where we are now, is truly amazing. It makes nights like this one tough. Tomorrow is a HUGE milestone for Caed. One that will not soon be forgotten. In a way, it represents his "healing day." Even though we have not used his g-tube for several months, it's still there. It is a constant reminder. Honestly, I'm not sure how I will really feel with it gone. Caed has had it 1/2 his life! It has made Caed who he is today. And yet, SO much joy floods our hearts. I look at Caed's future now.....and smile.

It's easy to see the ways Caed is different when we are back home with all his friends. Outwardly, no. He is as normal as they come. Thank GOD for that! But, there has been a list of things Caed can't do. Most have been easily accepted and understood over the years. Others, not so much, and tears and heartache usually come. As hard as it is coming back to the hospital (for whatever reason these days), it is here that we are continually reminded of God's grace. Here at UNMC, some kids call this "home." On a daily basis, these drs operate and care for very sick children and try to manage their long-term care. But, it is HERE....that the tables are finally turned, and Caed gets to be the "Intestinal Rehab Rockstar." Here, he gets to be the poster boy. And it is here, where we are constantly reminded of just HOW FAR he has come.

Today in our pre-op anesthesia meeting, it hit me. The doctor began asking, "...so he isn't currently on ANY medication?!?" The answer no. "He hasn't used his g-tube in several MONTHS?!?" The answer no. "Does he still have any home health care?" The answer no. "Does he still have his central line?" The answer no. "Does he eat entirely my mouth?" The answer....Y-E-S! (and then some...) "Is he active?" The answer....you don't want to know. There were days/months/years in which our answers to those questions would have been quite different. I sat staring at Caed (beyond bored at this point) and wondered if he really knows how SPECIAL he is. The God of this Universe has held him in the palm of His Hands. In His own perfect timing, He has brought Caed to this very day. Todd and I will never understand why He chose to have mercy on our son 4 yrs ago....and all the days that have since passed. BUT...without a doubt, we recognize it! We SEE His Handprints all over his little body! And they are beautiful.


Take a deep breath, close your eyes.........for tomorrow Caed will have a BIG surprise to show the world!

The Means to an End?

We have BIG news this week! On one hand, it's quite exciting.....and the other, very frustrating. We will be headed back to Nebraska in Feb. for another surgery. Our incision issues have been going on for such a long time, and do not seem to be getting any better. They will attempt a wound revision and we will PRAY PRAY healing will take place once and for all!

Drum roll please.........while in the O.R., they will go ahead and remove his feeding tube! I don't even have the words to describe the emotion that brings. Caed has had his button for almost 1/2 his life! I honestly can't picture in my head what his tummy will be like without it. But, oh....SO GRATEFUL!

There have been similar feelings with this tube removal as I did with his central line. HATED that thing, and yet...security was attached. I guess that's how I feel with the G-tube. A couple of nights ago, I had myself a little "Mommy cry fest" while the rest of my family lay sound asleep. Don't get me wrong, we have PRAYED for this day to come. We have planned for this day, and now it's finally here. Images, awful images, flashed over and over in my head of everything Caed has been through these past 4 years. It was like a horrible movie. I knew the ending. I knew it all worked out, but reliving those darkest days and nights released buckets of tears that I didn't know I still had.



This upcoming surgery is very bitter/sweet for us. There is great joy coupled with tremendous fear. Two separate issues, yet both ultimately caused by that unforgettable spring day in Mar. Looming questions, concerns, "what if's." Grateful hearts, celebration, praise. My heart is involved in a tug-o-war battle, but I'm desperately trying to cling to His past faithfulness....knowing I can fully trust then in His future graces.

When Todd sat Caed down a few nights ago and broke the big news to him, a huge smile emerged from his worried countenance. (tends to happen when Daddy "sits you down to talk.") He wasn't thrilled with the incision (surgery) part, but....was super brave and understood. Later, Todd and I listened in on all 3 kids having a private discussion in Reagan's room.

Caed: Caleb, lift up your shirt. See your tummy? Well...that's how MINE is going to look after my surgery.

I wanted to cry. His poor abdomen/chest will have so many RR tracks and scars. I don't think he understands that fully, but our prayer will be as he grows older, those "battle scars" will be a great reminder to the All-Powerful, Healing, Compassionate Hands of God.

Caed has Short Bowel Syndrome. No surgery (other than transplant) will ever change that. This will be a condition he lives with the rest of his life. He will always have to watch what he eats. He will always need to make hydration a priority. He will very likely need supplemental injections or meds to overcome what his body lacks. Routine blood draws and x-rays will be a part of his life. Currently, he has no appendix, no gallbladder, only 10% of small intestine and roughly 1/2 of colon left, a hiatus hernia, and distorted stomach. It's amazing. HE is amazing. Yet, his outlook on life and his love for people are contagious.

Thank you LORD for getting us to this point. Thank you that though at times it seemed we were drowning in helplessness and fear, YOU were still there. Carrying us. Holding Caed ever so tightly! You never let go. And You continually showed us how 'good' was being brought out of a very painful experience. We are humbled. We fall paralyzed and mute........at the thought of Your mercy and grace on our lives these past 4 years. Don't ever let us forget....

You Give and Take Away......yet Blessed Be the Name of the LORD

It's not about you

We are finally back into the swing of normal life around here. We had a wonderful (WHITE) Christmas this year and truly enjoyed being home for the holidays....something we haven't been able to say the past 10 years living away from Lubbock.

Caed is doing well. His incision is exactly the same.....as it was prior to November's surgery (that was supposed to have fixed it). To say we are not heartbroken and discouraged is an understatement; however, we are desperately trying to be patient and believe healing on the site will take place...eventually. At our last dr. visit with Dr. G, she remained a little puzzled as to WHY it won't close up, but said we needed to try to keep the scab on it as long as we could, and then when it does fall off, continue burning with the silver nitrate. That has honestly been an enormously difficult challenge. Not the burning. But rather keeping the scab on. Caed is as normal a rough and tough little 8 yr. old boy as they come. To force him to sit on the couch all day....would be absolute torture and punishment to him. And I would NEVER encourage that regardless! But, maintaining the balance between physical activity and "staying calm" is impossible. It might be obtainable with an adult, but not so for a child....who tends to live in the moment and doesn't understand certain consequences. We are averaging once a week 'something' happening in which he comes to me with blood dripping down his tummy and scab torn off. I truly don't know what to do. But earnestly praying that some major healing is taking place the 6 days the scab is in tact. ;)

Today was yet another example my heart was broken for Caed. He was invited to a good friend's birthday party. An (indoor) swim party. Currently, Caed is only bathing in a few inches of water, so immersing the incision in a swimming pool is completely out of the question for us. This problem site has gone on for 6 very long months. We just can't take the chance.

This family is dear, sweet friends of ours. I couldn't think of skipping out on it....simply to spare Caed's feelings. I knew it would hugely disappoint him, knowing he could not jump in the pool like all his friends. Sitting poolside watching is something Caed has had to do over and over and over these past 4 years (at various stages). I couldn't stomach the fact that he would have to do it again. I coordinated with the mom and we decided if we came for food and gifts (skipping the majority of the swim time), that would be the best option. Not ideal however.

I probably chalked up another "mama mistake" in the record books, but I chose not to tell Caed it was a swim party until we were right outside the door. I knew Caed. I knew he would be upset. I knew he would cry. And ultimately not want to even attend the party. As his mom I honestly would have been ok with that. To want to spare your child of any pain is what we parents do best. But I also knew he needed to experience disappointment. He needed this to learn from and grow.

As I knelt down to break the news to him, tears began to flood his eyes. He painfully looked at me and whispered, "....then WHY are we even here?!" I understood his question. Don't we ALL find ourselves asking that at some point or another when there's nothing in it for us? I simply replied...."Caed, this is not about YOU. We are here to celebrate your friend!" I turned and walked up the sidewalk. He of course, with shoulders shrugged made no hurry making his entrance into the party.

Yes! My heart hurt for him!! Deeply. He did not want to eat with his friends, and was uncharacteristically quiet. Reserved. Melancholy. He later perked up a little and did what Caed always does when he isn't allowed to swim.....throw objects into the pool for others to catch. We left the party and finished our day just like any other. Caed was not traumatized by this event. He will not experience nightmares tonight. And will quite honestly, forget about it Monday morning at school. He was, however, reminded of a simple truth he will desperately need to learn for the rest of his life.

As much as we wish it weren't true......it's not about us! Any of it. And I believe the quicker we get this....the more we are able to enjoy life. To not take things for granted. To see the 1000's of ways God graciously blesses us daily! And begin looking more to the needs of OTHERS. We are here ultimately to glorify God and enjoy Him forever. But, how quickly we get distracted, lose our focus, and try to turn the spotlight on ourselves.

I know beyond a shadow of a doubt this was not Caed's last "short gut disappointment." That's what it was. Everything he has dealt with and is currently dealing with....is 100% due to short bowel syndrome. I know there will be more heartache to come. But, we also desperately want Caed to understand it's not about all the things he can't do (or may not in the future), but rather..... ALL he can do! God miraculously HEALED that child. There were many days (not that long ago) in which a machine was helping him stay alive. There were weeks and weeks, he could not walk. And MONTHS he could not eat. He is BLESSED! We all are. Whether in the game or standing on the sidelines....watching.