Negative

....that's what all 4 tests have come back showing. That SHOULD be good news!!! However, we just really want to know why he continues to have these little pain spells. They aren't major (like last week), but enough for us to be concerned (given his history and condition). Overall...Caed is actually doing really well! Completely "normal" 95% of the day.....until one of those spells hit. I have a good (cyber) friend who said her son has the exact same symptoms as Caed when he gets overly dry. So, I guess that could be a possibility as well. ???? We have a blood draw scheduled for tomorrow, and then we'll go from there.......

still waiting.....

2 of the 4 test results have come back negative. (not sure which ones are still out) Normally, a negative test result is reason for great rejoicing....and maybe this is. I guess I just want a straightforward answer. Why is his belly hurting? Our plan is to get another blood draw probably tomorrow or Wed., and hopefully by then we'll hear something from the final 2 tests.

Thanks for your prayers with our little bump in the road........

No news.....

.....generally means good news!!!

Caed has actually had 2 very good nights. ZERO waking up!! (which is quite unheard of....even in his "healthier" days, he would always need to get up at least once) The pain spells are much less frequent and his output has also decreased some.

All samples/cultures are being tested as we speak. Then, they will be sent off to NE. Talked with our nurse coord yesterday and she said maybe "whatever it was"........is working itself out of his system. Our main focus right now is still the possibility of c-diff colitis.

We can't thank you enough for your prayers for Caed. The Lord has heard!!

**UPDATE** - school nurse called awhile ago....Caed was in her office hurting. He is now at home asleep in bed. He told me "it wasn't one of the major pains, but just the normal ones..." Poor baby!! He is ok. These "spasms" seem to go away (as quickly as they come). We'll just continue to pray those results come back QUICKLY!!!!!!!!!

Update from NE

Just heard from our docs in NE. They too are concerned with his white blood cell count. Caed typically stays at 5000-7000. Monday's test showed 18,000. Our first step is to get a stool culture. They want to check for c-diff again. This might be an odd prayer request, but we are hoping that it is. Our nurse said some sbs kids have lots of pain with c-diff (and increase in stool) - which Caed has had. If he does....then we can treat it with some long term antibiotics. If not, they are wanting to see him! So, our June appt. might come sooner than we expected. (but we will pray not)

Caed did ok yesterday. Most of the day acted very normal with the exception of a couple of short pain spells. He is definitely stooling much more and the consistency is pure liquid. Ughhh! He has also had 2 accidents in the middle of the night (which he has NEVER done before). He is having to get up about 4-5x during the night. Tough on Mommy and Daddy....but tougher on him!

Please pray for this next step in trying to determine what has happened and where our healthy, thriving little boy went............... ;)

What would March be without a trip to our local hospital?

Where to begin......

I guess I'll pick up from our last post. Because Caed has been doing SO well (also known as the "IRP Rockstar" in NE) and since we were soooo close to our goal on enteral feeds, we decided to go ahead and "pull the plug" and stop our nightly hookup routine. He did GREAT, and his output (nice word for poop) was even better!! I knew it! He is ready and can do it!!!

Several days into our experiment we began to notice some behavioral issues with Caed (mentioned those in previous post). Just very out of the ordinary and seemingly a bit coincidental....or what is? NE called with his latest blood work and said his CO2 was down. (which might explain some of his symptoms) They have told us when your CO2 is really low, you might feel like you're having a hang-over. Remember back when we had lots of trouble waking Caed up (1 1/2 yrs. ago)? LOW CO2!!!

However, last week during Spring Break I began to see yet another symptom, but this time....one that always causes the hair on the back of my neck to stand at complete attention. PAIN! He would be fine....totally normal.....practicing up his Nacho Libre moves on Grandaddy....and then get a certain look in his eye....and come to me whimpering of stomach ache. (generally about 30 minutes after eating) I would take him to the potty and that would do the trick. Yet....going from 1-2 stools/daily to 5-6.....and pain after every meal.....was very disturbing for us!!!!

Something was up! And Mama's instincts were on high alert!

Yesterday when I picked Caed up from school, he seemed very tired and unusually quiet. After getting Reagan (and friend), we drove on over to Sonic to celebrate Haley's 1st day at Celina School. Both girls wanted ice cream....and after Caed responded (in a whispering voice) that he only wanted water......I knew! We barely made it home. He began crying so hard. He literally flew out of the car into the restroom, and then cried himself to sleep afterward. I immediately called Todd and NE...and we began formulating a plan. We didn't think it warranted an ER visit (been there....done that), but knew we needed to get an x-ray and labs sometime this week. I even talked with our good friend/GI dr in Lubbock and were making plans to see him. When Todd got home, we knew we needed to get Caed up and moving (didn't want CO2 to get the best of him), so they headed off to McKinney to run a few errands. I continued to make plans for dr./x-rays/lab.....when I received "the call."

"Lori, I don't think we can make it back to Celina....he's hurting too bad.....we need to find a hospital!"

I have always been with Caed throughout this whole ordeal. Right by his side. Comforting. Consoling. Trying to get him through whatever was wrong. This time I couldn't. I was on the opposite end. I could hear the cries. The pleas for help. And yet was so far away....and utterly helpless. I ran to our neighbor's house (whose wife had just had breast cancer surgery that morning.....BAD TIMING!!!). They took over (with Caleb) without any hesitation...and off I went.

OH.....to be that parent.....putting your hazard lights on.....speeding through the city....all the while your mind racing at double speed. I cried. I prayed. I pulled myself together only to fall apart again at the next light..... Finally, I was there. I saw him. He was ok! Scared to death. But ok. Much different from our ER experience 2 yrs. ago!

They started him on an IV.....drew blood....and took a couple of x-rays. (all within lightning speed of 4 hours...ha!) The x-rays showed nothing of great concern (obstructions, etc...), however....the dr. said probably a contrast study of bowel is what we would need to really know what's going on. yuk! Don't like those. His labs came back ok....other than elevated white blood cell count. (still not sure what the cause of this is) and also some ketones found in urine. We were sent home around midnight.

Our course of action now is to go back to all enteral feeding/meds......just like he was. His body simply may not be quite ready to do all this on his own yet. Which is fine....but such a let down to me. For anyone who is around Caed at all.....you can attest to his "normal-ness!!!" You would never, ever know anything was ever wrong with him. I guess I too fell into that trap and thought he was doing better than he really was. Caed has a chronic condition...and one that may need the help of feeds and other meds for a long time. We just had our hearts set on g-tube being GONE by summer. I honestly have my doubts now. It just may take a little while longer......and that's ok!

As we left the hospital last night, Caed wanted to ride with Mommy (as usual). Before even getting out of the parking lot....he was out! Completely exhausted. I sat looking at him in the rear view mirror and thanking God (once again) for hearing my cries for mercy. Pleading with Him for Caed to be ok. All 3 of my children lay sound asleep in their beds right now. It's a gift!! An absolute precious gift that I do not take lightly.

Thank you ALL for your rapid response last night. The sound alarmed and the troops were sent out immediately! Again....we were overwhelmed by the love, support, and especially PRAYERS for our little boy during such a scary night. Thank you Samantha, Becca, and Christa for allowing me to simply grab my purse and rush out the door. I never once worried about Caleb....knowing he was being well-taken care of. You were evidence again of God being in control....even down to the tiniest 2 yr. old detail!!!

Have I not commanded you? Be strong and courageous. Do not be terrified; do not be discouraged, for the LORD your God will be with you wherever you go. (Joshua 1:9)

CO2.......

.....why do like to torment us so?

Well....results came back from Caed's latest blood draw. The main thing we found out was his CO2 was low again! One of our nurse coord asks me lots of questions and then was going to pass it along to the docs. Was sure wishing I would have heard back today, but Tues. is their IRP outpatient clinic (BUSY!!!!) day. Hopefully, will learn more tomorrow. May just be a simple solution like adding sodium bicarb to his ORS drink. (since he is no longer getting it through his feeds)

Caed has been off ALL feeds for 10 days now!! Won't go into all the crazy details which led to it, but basically after 3 "free" nights, we decided to continue on and just see how his body handled it. He was at 600 mls....and our goal was 500.....so, we felt we weren't too far off. For the most part, Caed has been his normal self. But, we began to notice (just days into our little experiment) that he was MUCH more irritable, whiny, frustrated, and tired. Now, all kids (and us adults too!) go through spouts of this, but the coincidence of it all happening at the same time made us question whether it was cause and effect. Still not certain.

We will probably go to either weekly or bi-monthly labs for awhile to monitor his CO2 as well as everything else because of the change. We are optimistic it will someday level itself out without meds, etc.... , but sometimes reality sets in causing us to remember he still lives with a chronic condition. Something that is SO VERY easy to forget because of how "normal" Caed acts. However, we PRAISE GOD for that!

Will update again after I talk with NE further. Thanks for the prayers.......

*we are enjoying our Spring Break in bi-polar Lubbock.....snowed yesterday....65 and sunny today! Gotta love it!!!

Not just any stick

Today's blood draw for Caed is HUGE!!! I will not go into all the details (just yet), but simply say.....this may be a big indicator of how his body is truly handling things on its own. Probably will not know results for several days (and especially it being a Friday afternoon). Will post as soon as we hear them!

Please just pray for GOOD, HEALTHY......NORMAL (short bowel) results!!!!

Thanks.....we love you!

The last time ??

The past few nights as I have been hooking Caed up, he has cried out in pain. One night I just stopped. Didn't even finish. I felt so bad for him. Last night again he cried himself to sleep. I knew the (dreaded) time had probably come once again to change out his button. So, this morning, I made the announcement. Caed was actually relieved and somewhat excited until I began getting out all the supplies and he realized we were doing it NOW! He began whimpering and begged me to please not hurt him. Of course, just like all the other times.....my heart was racing just as hard and fast as his was. Only I had to remain calm and unbothered. (have I mentioned I have great acting skills??) Caed wanted Reagan to come in and hold his hand. She was very sweet, but scared out of her wit as well. She told him, "Caed, I will hold your hand, but I can't watch. You just tell me when it's over!" Caed on the other hand.....won't take his eyes OFF IT! I think it scares him more when we tell him to 'look away.' He wants to know what's happening to him. (same with blood draw) It was quick and easy. No problems. However... as I went to console Caed when it was over to tell him how proud I was of him and HOW BRAVE he is....I could feel his little body shaking all over and his heart beating a mile a minute. I could see his pump and the bag and tubes hanging from his bedside. Oh, I wanted to cry at that point. When will this be over? Why has this little boy had to go through all this the past 2 years?

As Caed left out the door for school, I was busy cleaning up all the 'supplies'.....and at that point wanted to fall on the floor and cry my eyes out. (mostly due to just exhaustion) I know....it's just changing of a button. It really isn't that big of a deal. There are always worse things. I am so past the absolute "grossness" that accompanies changing it out. There was a day and time in my life in which just a simple trip to a hospital to "visit" someone would cause my head to spin and ultimately faint. I would find myself in an unused hospital bed in the room next door with medical personnel swirling around me. haha And now, I think....wow! I could be a nurse. Medical issues fascinate me. Hospital life is exciting (as long as you or a loved one is not the patient). I am completely unfazed by needles, blood, vomit, or any other bodily fluids. And yet.... as this little boy's Mommy.....I will NEVER get used to seeing a quarter inch HOLE in his abdomen. I won't! It's not normal! Maybe in other people. But NOT my child!

As I sat to catch my breath, the thought hit me. Like a ton of bricks. Was this the last time we will ever have to do that? The next time we take it out.....will there be no 'replacing it?' I still can't believe it. What will it be like not being there anymore? What will his tummy look like? How big of a scar will this hole leave? And yet, I'm scared to go there. Don't want to put the cart before the horse just yet....

It's just times like this morning that once again remind me of the seriousness of Caed's illness. When the doctors told us days after his initial surgery (after being shocked he survived it), that this would just take lots and lots of time.....I remember shaking my head in agreement. "We can do that!! Time is easy. So like what?......10-14 days in the hospital??? Wow, that's a lot. But we can do that!" haha Oh....how naive I was. Thank the Lord for that!!! Never in my wildest dreams would I have thought Dr. G meant 2+ YEARS!!!!! It's coming. The end. Very soon. I just know it.....

Piece by piece

Today is Caed's 2 yr. short gut anniversary. I remember dreading this day last year like the plague. This morning I woke up very early to rain outside and assumed it was a perfect symbol as to how I would be feeling today. Dreary. Sad. Deep in thought. Tears.

Caed's story thus far has a happy ending, but reliving those first critical hours....days in the ICU wondering what in the world just hit us.......then the weeks which turned into months....and now YEARS....can be difficult to wrap your brain around. I in no way want to live in the past, but for me......March 1st is not another normal day. It will forever in our home be a Remembering Day. We will remember the pain, the heartache, and the utter desperation. We will not forget those days and nights in which we were at rock bottom. The day in which our world was turned upside down. I believe it's important to remember where you've been.....so you can see HOW FAR you've come. And to know He's still here......He's still carrying us......and still the same faithful God as He's always been! Nothing, absolutely NOTHING can ever change that. What tremendous hope we have!

Caed is aware of his "annibersary" today. Although to him this day simply signifies getting a giant waffle cone filled with chocolate/vanilla swirl ice cream after school. (and it's not even FRIDAY!!!) I want him to know what a special special day this is. Caleb and I went to surprise him at school during lunch. To have seen the look on his face.....it was priceless. My desire is to make this day just as special for him as his birthday (only minus the gifts and party drama...ha!) I wish we had an actual "healing day." A day in which everything was made well again. In an instant. Now, THAT would be a great Remembering Day deserving of ice cream. However, because we don't have that....we will just use the day the Lord lovingly chose our family (and particularly Caed) to carry out a very special purpose.

Today also is a big day in another way. We are now down to only 600 ml nightly!!!! Continued evidence of Caed's progress and God's hand on him. Hopefully we will have 2 more months on feedings....and then be totally OFF in May and June. We will carefully watch his labs those months in particular and if all checks out......Dr. M said we'll look at taking the G-tube out permanently at his next NE appt!!!! We are SOOOOO close......and yet I think Todd and I still struggle with watching Caed's output.....weight......energy level.....labs, etc....each time we go down on his feedings. Please pray for all to continue to go well in the weaning process. So far....so good!!!


The Lord has taught me SO many things over the course of these past 2 yrs. in particular. However, there is one that seems to always trump the others. It's His Sovereignty. Not just to know about it....to read it...or be aware of all the great debates surrounding it, but to LIVE IT! To see first hand how all the pieces in our lives fit together. Some of them are wonderful....happy, joyous occasions or memories. My wedding day and birth of Reagan, Caed, and Caleb... just to name a few. However, there are also many pieces that are horrible! Things that you wouldn't wish on even your worst enemy. We all have them. The good and the bad! And that's what makes our lives such beautiful, indescribable works of art. To see how the God of the universe takes the good, the bad, and the ugly and molds them all together to make a masterpiece that even the most talented of artists couldn't possibly create. It's down right HARD.....no...it's excruciating..... to go through those difficult times in our lives. I will never make light of them. However, if we can only learn to look at them through God's eyes. And know He is using our trials to make us stronger and ultimately to make our life portrait more exquisite!!!

There are many pieces (possibly) of our life portrait that remain "open.". Untouched. We must simply wait patiently on the Lord to continue carrying out His plans and purposes for our lives. And in the process try not to resist Him on anything (difficult) He brings our way. Remember he sees the big picture. We cannot. Let Him do His work.....and glorify Him in the process.

Each day. Each moment. Each situation that comes into our lives....is but a tiny puzzle piece of an enormous work of art. Thank you God for loving me enough to work so intricately and diligently on my life....and for cleaning up and making something beautiful out of all the ways I continually mess it up.

Because of the LORD's great love we are not consumed, for His compassions never fail. They are new every morning; GREAT IS YOUR FAITHFULNESS!!!!!!! (Lamentations 3:22-23)