Definitive Plan

Got a call from NE today. After talking with Caed's dietitian, they have decided to hold off on the weaning process. Our main goal is to get him stabilized. So, it looks as though we will stay on 500ml feeding through the remainder of the summer. Then.....we will slowly begin decreasing again as school starts. They also told us they are seeing several of their sbs kids experience severe cramping when coming off the feeds. THAT explains it! Finally....I get a legitimate reason in my head for all the issues we've been having lately. All of this started when we stopped his nightly feedings. I guess 500ml is not quite enough for his body to compensate on its own....as previously told to us. Caed just might be a little different than the "sbs norm" and that's ok. We will take this thing down as low as we can go....if needed. His pain spells are becoming less frequent and less intense. Praise God for that!

We haven't quite broke the news to Caed yet. And we need to rethink the bed situation. Caed and Caleb have bunk beds and the plan was to move Caleb to the bottom bunk (from crib) when Caed got off all tube feeds this spring. Then, Caed could officially go to the top. Ughhh.....now I'm not sure what to do. I guess if Caleb is not trying to crawl out of his crib, I should be thankful and let him go as long as possible. There is no way I can let Caed go on to the top and still be hooked up. I cringe just thinking about all the possible disastrous scenarios. Oh well.....if a bunk bed is the greatest of our worries right now, then we are BLESSED!




We are in FULL swing with baseball and softball these days, and spending every waking moment after school at the ball field. If I had of known how crazy it was going to be, I might have rethought both Caed and Reagan playing at the same time. BUSY-BUSY! I will post pics soon!!!!
They are both loving it!!!!

Easter weekend

Why do you look for the living among the dead? He is not here; HE HAS RISEN!



Hope you all had a very blessed Easter weekend. The kids had a great time decorating, hunting, and playing with eggs on Sat. afternoon....and then going to an "egg hunt at night." Todd and I didn't go (instead went to see the Mavs play), but we were told everyone had a great time. They all had flashlights and off they went to find their eggs in the dark!!! Sunday morning was a wonderful time of worship as we celebrated our risen Savior!



Now, for a Caed update - the results from his last test came back today. His labs look "ok." Not GREAT....but ok. His white blood cell count is dropping, which is good, but he is still a little on the dry side. Caed went 3 days pain -free. Then, in the middle of the night last night....we had 2 short spells. They didn't last long, but made for a very tiring morning. The thought is he might have some kind of GI bug that has hit him hard (going on week #4). I don't know. None of it makes sense to me......when we look back at when it all started and how the pain-spells transpired. They began hitting him right after he would eat. 5-7 a day. Then, they became much less frequent but more severe in pain. ER visit. Lately....he will be just fine, outside playing or sitting watching tv or at school or sleeping.....and all of a sudden one hits. There just doesn't seem to be any pattern that I can see. I'm still not sold on it just being a bug, but for now.....we'll keep our eye on him. It may actually be a combination of several things.



The plan as of now is to keep doing what we are doing. He will remain at 500ml of formula for the months of April and possibly May. The risk of dehydration during the spring and summer months here in Texas can be high, so we really need to be careful. Also because of this latest setback, it's looking like we may not get rid of the g-tube in June as planned. We'll just have to wait and see. NE is feeling as though we may need to wait til the end of summer to be on the safe side. (again....for risk of dehydration) As much as we are wanting that thing GONE.....we also don't want to remove it too soon. I know Caed is going to be so disappointed. He talks about "his tube being gone the next time we go to NE" all the time. Which is probably my fault! But it'll be ok. We can talk him through it, and let him know the reasons why we might have to wait. He's a big boy......








playing Egg Toss after they found all the eggs. Our street and driveway were a mess.....but made the birds very happy!!


Some pics from our night with the Dallas Mavericks.....fun!!! We had GREAT seats!

Dirk Nowitzki



Kevin Durant and Jason Kidd

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)