Desperate

3rd wound revision.

4th surgery this school year.

7th time in the operating room.

Our hearts break for Caed. We hate that this year-long battle is still far from over. Last night I overheard him talking to Caleb. He said, "If they don't get these stitches out and fix me, I'm going to die."

TIMEOUT!!!

I quickly rushed in to correct him and reassure little brother who was in shock at this point. I don't think Caed truly believed what he said, but rather was trying to articulate his built up frustrations and fears in the only way he knew. After I talked to him for awhile, he said, "I know....but I just want to be a NORMAL KID for a change!!"

Deep down....so do I.

Tonight Caed had his first baseball practice of the season. Todd and I had decided to go ahead and sign him up with the understanding that he possibly wouldn't be getting to play much. He is on the same team as last year, the Pirates. He LOVES baseball (well, any sport), and keeping him from "playing" was absolutely heart-breaking. His coach was truly wonderful and told us if at any point Caed wasn't able to play.....the coaches sure could use his help. This really cheered Caed up and was just the thing he needed to hear. Tonight however, Todd and I decided to go ahead and let him practice. As long and hard as he could and wanted. He did wonderful. He LOVED every minute! And I know for that hour.....he felt NORMAL again. That alone did more for him than any medical treatment over the last several months.

This afternoon we saw Dr. G again. After reviewing the past 2 surgical reports from NE, she and her team decided we would give it ANOTHER SHOT. I will not go into all the complicated details that were discussed, as well as the past 3 surgeries and what actually took place during them......but will do my best to give a summary of what's to come:

*Surgery #7 next Friday. Here in Lubbock. Because this is an incision issue only, it is easier for us to stay here and let Dr. G handle it. (If it has to do with intestinal rehab, short gut, etc....UNMC is our one and ONLY choice!) Funny though. This whole thing actually started because of sbs. Gallbladder gone bad.

*She will go back in and clean it all out (again). This time however.....NO stitches will be used at all. The last surgery, Dr. M kept the wound(s) open to heal from the inside out....also trying to avoid stitches that could cause infection. He did, however....use a type of highly dissolvable stitch way down deep. (do you like my medical terminology?) Dr. G however, said she would not even use that. I don't think this is ideal for surgery. She said several different things could result. It could heal beautifully from the inside out with ZERO complications. (I voted for that one!) Or scar tissue would build up and a possible ab hernia could develop.....resulting in a surgical fix later on down the road. (Boo!) Or....none of the above. And we could still be dealing with this same lingering issue next month. (Don't have a comment for this one. Can't think about it)

Caed cried when we got back out to the car after leaving her office. Tears streamed down his cheeks as he cried...."I'm tired of all this! I want it to be OVER!" I wanted so badly to just hug his neck, cry right along side him, and tell him I felt the SAME WAY!! But....he's 8. I know he doesn't have the maturity yet to understand. Seeing Mom cry too would only scare him further. I have gotten pretty good at on-the-fly pep talks, so I did what I always do.....try my best to let him know it was going to be easy, and that these doctors SURE love him a lot and will take extra good care of him. (I also threw in a few things about baseball and swimming....and how hopefully this will finally do the trick, so he can be FREE to do whatever he wanted this summer!) He settled down fairly quickly as his mind completely turned to baseball practice. Do you understand even more why Todd and I gave him NO limitations tonight? He desperately NEEDED it.

My heart continues on this wild roller coaster ride. One minute I am frustrated. I am questioning God. What in the WORLD could be His purpose for all this?!?! The next minute I am counting my blessings. Seeing that things could be so much worse. But, maybe in an odd way....that's why it's been SO frustrating. Over the past 4 years, we have dealt with Caed primarily under 2 umbrellas: very sick, knocking on death's door ~ OR~ outwardly so "normal" people have no idea what he has been through or currently deals with (sbs). Overall, this year has been neither. We can fill in the blank with either scenario: He's not serious enough to warrant ______, but he's not healthy enough to get to ___________. Tough. Especially at age 8!

To get your hopes up, only to be let down.....then back up....then let down again....back up.....and now down.....is paralyzing. You are afraid to think positive. To hope and pray for the best. To BELIEVE that this time will be when God chooses to heal him. Because deep down.....in the deepest, darkest part of your heart, you are afraid. You are bitter. You are tired and frustrated and just want "TO BE NORMAL!" You prepare your heart for the worst, and begin worrying about things that haven't even happened yet. To think otherwise.....will only set you up for further disappointment. You have prayed. Others have prayed. All over the country.....and world. And yet, nothing. Absolutely nothing has changed.

I could end this post many different ways. Thoughts, Bible verses, sermons, encouraging words spin wildly around in my head. I hear them. I see them. And yet they continue swirling around and around faster and faster. They will not stop. I cannot grab a hold of any one. I know they are there! And yet all I can do is close my eyes, raise up my arms and allow them to fall on me. I want to say "It is well with my soul"........"Do not be anxious for nothing".............."HE has a plan"........"My Savior can move the mountains."

But, tonight.....I am tired. I need a good cry. I will simply close my eyes and believe "His mercies are new every morning."

Until then.

"Why can't they fix me?"

Still awaiting word from Lubbock saying they received all surgical details from UNMC.

Caed is doing well. He is as normal outwardly as you can get. However incision is not changing.....

After school he and I had an unplanned heart-to-heart. He made some simple statements that have haunted me all evening. "I just want to be normal like everybody else....." I tried to quickly flip it around and remind him HOW WELL he is doing. He just kept shaking his head, and then said, "Why couldn't the doctors fix me? I don't understand why they keep putting in those blue stitches."

Honestly, I don't have an answer to his last question. I know there are worse things. I really do!! And because of that, I am grateful for simple "blue stitches." It's just been a long year...

As I am currently sitting down tonight to fill out T-ball and baseball registration forms, I am frozen. I have stared at Caed's form. I have even picked up the pen to begin writing his name in the first blank....and then I stop. Baseball is by no means our LIFE, but.....oh, Caed sure does love it! Just have no idea what we are supposed to do.

As I was looking for Caed's birth certificate this evening, I came across a file. A BIG file. I knew exactly what it was. Upon opening it, our lives from Sept. -Nov. 2008 fell out. From start to finish, everything that was Omaha, UNMC, Intestinal Rehab, the Lied, plane vouchers, rental car receipts, weekly clinic notes, labs, and of course....Caed's "journal." Everything going in as well as going out of this little boy was recorded, in depth. Two emotions swept over me: grief and thanksgiving. Very painful days were brought to the forefront of my mind reading his journal. And yet.....I was shocked remembering the details.

Lord, you have brought him SO FAR!!!! Thank you!

We have no idea what the next several weeks hold. Will there be surgery #7 added to our spring calendar? Or will there be an easy fix and Caed finally released to play ball.....to swim....and enjoy all those things he has been waiting for?

There is no way to answer those questions....tonight.

Instead, we will rest.

Rest in Your Faithfulness.

Rest in Your Sovereignty.

Rest in Your Healing Hands.

(remembering your plan for Caed goes far beyond Idalou Little League 2012)

A Broken Record

I'm beginning to feel like we need to push the Repeat button on Caed's incision issues.

Frustration.

Confusion.

Heartbreak.

These are a few of my thoughts as we left Dr. G's office this afternoon. She is not convinced that his ab wound is "healing." So much so, she went and got her associate surgeon to come see for himself.....the mystery.

NE told us when we left that the G-tube site would take much longer to close up than the ab one. Up to a month. Well, here we are days away from 1 month.....g-site is closed. The other is not. LONG story short, Dr. G and Dr. R feel that possibly Caed is allergic to a specific type of stitch used on both June and Feb. surgeries. All details from those procedures will be faxed from UNMC this week, and Dr. G will discuss specifics with Dr. M. Then....we go from there. Surgery #7 is a strong possibility.

This is the reality of having 2 separate hospitals/doctors (900 miles apart) working on your child. 99% of all sbs'ers are in this same boat. Very few people have the ability to MOVE to the city/state in which their specialist is located, and/or travel back and forth on a whim. We are no different. Therefore you attempt as best you can to work together as a team. Very difficult, but completely possible. We know beyond a shadow of a doubt both these teams LOVE Caed. They both want to see him healed. We will get there.....together.

Dr. G commented many times today how she can't believe this is what we are dealing with! After EVERYTHING Caed has been through. Remembering just HOW SICK he was....and for almost an entire year....we are still struggling with a "stitch problem."

Todd and I were very deflated after the appointment. Honestly it was the LAST thing I expected to hear going into it. ("another possible surgery needed") However, after I spilled my heart, Todd simply said, "It could always be worse." Hey! That was supposed to be MY line!

So, tonight we are thankful. Caed is tucked warm in his bed with his little sidekick just beneath him. No medication was needed. No feeding pump was connected or TPN hung. Just the sounds of two giggling superheroes echoing down the hallway. We will take this day by day....and desperately not get ahead of ourselves or allow our minds to drift to dangerous places.

Our main prayer request right now is for clear communication to take place between NE and TX this week, and for an agreed solution to be made.

And of course......healing, once and for all.

Progress

As you can see from these two photos, we ARE making progress! The first one was taken exactly 2 weeks ago. The last one was taken this evening. (fortunately I didn't take pictures during the deep, "packing stage.")

We are more encouraged now. But, honestly have been concerned with the appearance of those ornery blue stitches. They were supposed to have dissolved deep under the tissue.....beneath the opened incisions. However, leave it to the Caed-man for it not to go "as planned." NE isn't too concerned, but want us to really keep our eyes on them. Said they have seen it happen in other kids. Our plan will be to wait for complete closure and then remove the stitches. Really praying it works this time!! (last time we had a stitch poke out like this, it wouldn't budge when Dr. G went to pull it out. But it also had been in there 5 long months. Possible adhesions, infection, etc....could have been the cause.) We have an appt. with Dr. G tomorrow for her to take a look. Nothing should be done....other than get a doctor's eyes on him.

Otherwise, he is doing SO WELL!! Silly 'ole Caed is definitely back! Zero pain medication is needed these days, and he finally moved back to his top bunk last night. He is not hunched-over anymore, and in fact....has a bounce (or strut) back in his step. Once again, our main concern with Caed is for him to "take it easy." The sad part is, he has been listening to those 3 little words now for almost......9 months! I am SO READY to let this boy loose! (and I know he is even more ready to be given the full green light). Our prayer is for him to be ready by baseball season. Still uncertain at this point....but even looking at these 2 pictures taken 14 days apart, we are hopeful.

Thanks for the continued prayers!

Number 4

My initial thought this morning was, "Wow....I can't believe it's been 4 years!" (although the majority of the time it seems like a lifetime ago). Honestly the last 3 years, March 1 was a tough day for me. Memories flooded my mind and would haunt me the entire day. Today, however.....was different.

Earlier this week, Caed randomly began a conversation like this:
C: You know in 2 days when I was sick?
Me: Come again?? I don't understand what you're asking.
C: You know! In 2 days when I was sick?
Me: (getting a tad frustrated) Caed, I don't understand. You are not making any sense.
C: When I was 4 years old!
Me: Ohhhh! You mean on March 1st?
C: YES!!! Well, do you think we could maybe go do something fun to celebrate me getting well on that day?
Me: You bet! That sounds like a great idea!

And it was. Caed chose to go see a movie and then out to dinner (his choice, of course!). I think Caed has begun a wonderful tradition. I wasn't sad today. It honestly for the most part, was just like any other normal day. It's probably hitting me more right now as the clock moves closer to midnight when the seriousness of March 1st really came into play.

As I was skimming through pictures of the past 4 years (and there are A LOT of them!), 2 things really jumped out at me:

First.....the irony of Caleb's birthday this year. He is now the age Caed was when he got sick (4). It still blows my mind when I look at Caleb, and especially when he wears Caed's hand-me-down clothes from 2008. Eeeery! A couple of months ago, we came across these....


I do believe 2 little boys have BOTH grown tremendously since those gowns were first worn.




The second thing was actually a surprise finding. As I scrolled through pictures, I came across one after another of Reagan right beside her little brother. Helping him. Playing with him. Just laying in bed with him. Bringing him toys or stuffed animals. Desperately trying to do whatever it took to see her brother smile again. (as illustrated in this next picture - Spiderman goes pretty well with Hannah Montana, don't you think?)


A couple of nights ago, Todd was working late and it was time to change Caed's dressing. I was nervous at first doing it all by myself. We had a routine and system in place. One of Todd's most important jobs is holding Caed's hands and calming him down. As Caed lay on the couch waiting for Nurse Mama to get organized, he said, "Reagan, will you please come hold my hand?" At first, her eyes got as big as saucers, and she looked over at me in a sheer panic. She replied, "sure...." I knew she was scared. She was nervous at what she might see under the bandages. I reassured her she didn't have to look.....just hold his hand. She did SO well! And even began encouraging him. It honestly was the best dressing change to date! Caed whimpered very little. I knew he was desperately trying to be brave in front of her. Little did he know, she was doing the exact same thing with him.

Reagan told me today she wrote in her journal at school about Caed and the importance of this day (and then even read it aloud to her class!). I sure would love to read it sometime!!

I am going to end tonight's post with a devotional from Streams in the Desert. "Ironically" dated......March 1:

"Your situation is filled with uncertainty and is very serious, but it is perfectly right. The reason behind it will more than justify Him who brought you here, for it is a PLATFORM for which God will display His almighty grace and power. He not only will deliver you but in doing so will impart a lesson that you will never forget. And in days to come, you will return to the truth of it through singing. You will be unable to ever thank God enough for doing exactly what He has done."