Thur. 5/15 - update

Be self-controlled and alert. Your enemy the devil prowls around like a roaring lion looking for someone to devour. Resist him, standing firm in the faith...
(1 Peter 5:8)

ok...first off, I have realized I have a new prayer request! I have spent over an hour trying to sign in to the blogger website to write my daily update. It wouldn't work. Something was wrong with the website. It dawned on me that satan must be trying to stop this from going out. Please pray that he would not have the ability to do so again.

Now, about our day: Goodness where do I begin? Todd said they had a good night last night. He slept the whole night, no pain/vomiting. This morning when I got to the hospital he was doing fairly well. But, after awhile began hurting. They decided to give the suppository. We have had this exact same one two other times. Never any problems. Dr. G warned us that it could cause bad cramping, but since he had it before, we didn't worry. About 30 minutes after he got it, we did get our 1st BM in 6 days! Thank you God. However, then the cramping started. It lasted for over an hour. It was one of the worst pain spells he's ever had! One night in ICU (when he had a bad drug reaction) was the closest to this. Even in ICU that night, I had to leave the room because it was too much for me to watch. I was literally getting sick to my stomach. Well, today I was alone. I couldn't leave. As I sat there on his bed rubbing his head with a cool cloth, I had to do everything in my power to keep from breaking down myself. I wanted to just CRY! He was in such severe pain and kept asking me when it was going to stop. I couldn't answer...I had no idea. I just prayed, "Lord, PLEASE deliver him from this! Give him rest!" Several nurses even came in to try to help. There was nothing anyone could do. Only time would help. We had the same nurse from yesterday, and at one point while Caed was screaming out in pain, I heard her a few feet away praying outloud for the Lord to take this from him!Finally, after that long excruciating hour, it began to lessen. He finally fell asleep for maybe 30 minutes. Then...a little while later, of course, guess who comes knocking on the door? The guy needing to draw blood! When they need blood, they always just get it from his port. No pain. However, if there is an infection in it, they need blood from another source. He had this done before and it was horrible for him. They use the lancets on his finger. May not seem too bad, but for a 4 yr. old, it's awful. However, with tears streaming down his face, he held up his hand and showed the guy which finger he could use. It absolutely broke my heart to see him trying to be so brave and yet so incredibly scared. The last time Caed had to do this, he held on to those fingers for days and kept talking about how bad it hurt. He KNEW what was coming. He did good, and it was over....at least for a few hours. Then another knock on the door. They needed more blood. I hated it for him! On any other day, this may not have been so bad. But after the afternoon he had, adding this to it, was awful. Finally...he rested a little more, and then.....what a GREAT night we had!! Oh God, he needed this so much (as well as Todd and I)! He was in the best mood, talked with the nurses, went outside, walked up to 3rd floor to chat with his other nurses, played in the playroom, etc.... This was the most I have seen him be "normal Caed" for this length of time. It was so good to see. And sometimes I would catch myself almost pretending he was well, normal, totally healthy! It was good to leave tonight on such a good note. Also, another praise: he ate 3 bites of ice cream and 2 bites of a chicken nugget. Normally, after 15-20 minutes of eating, he either just throws up or gives us the "sign" that he is hurting. Then we drain his G-tube. Not tonight. He ate those little things, and with G-tube clamped he went probably 2 hours of zero complaining. Hopefully, Todd can report to me in the morning that he went the whole night too! As far as us leaving the hospital...not sure when now. The blood culture still isn't back, although most all the drs. feel it is another staph infection in his line and are already treating it with antibiotics. (also no fever today!) His GI dr. did give us a little bad news though today. People can live on TPN (IV nutrition) but the longer you are on it, the more likely it can start causing liver damage. They have been checking his blood twice a week this entire time looking for those type of signs. Well, today he said they are beginning to see enzymes in the liver! So...we have to get him off that TPN ASAP! The only way to do that is for him to eat! (or try the J-tube again and feed his intestines that way for awhile) So, he is going to talk it over with the other drs. and possibly look at doing a little surgery the beginning of next week to insert the J-tube (directly into intestines this time).

When I left this evening I was overall very encouraged. We have so much to be thankful for! Many positive things are happening. We truly believe his body is starting to heal. However, there is also that side of me that knows we still have such a long road ahead and also fearful of the "what ifs." We have had "plans" before and for various reasons they didn't work. We pray that all the failed attempts are a thing of the past. Please God, help these new ones to work!!! I know Caed is so tired and scared and just wants to feel good again. Please help him to be the full-of-life little boy you created him to be!

Todd flies out in the morning. We feel things have settled down enough for him to leave now. Please also continue to pray for him. He lost a couple of days (working) and has lots on his plate. He is feeling a little stressed. Also pray for me as things can get hard when I'm by myself. (just having to "live" at the hospital night and day for several days can get old)

Thank you God for overcoming the enemy and having victory in this blog being sent out tonight!


Finally the pain was gone and he could
rest for a minute! (before the "blood
man" came in)


Caed in front of the hospital


Caed and his buddies...Sulley & Mike


We had taken all his toys home from the 1st time.
Today one of the Child Life girls came in and gave him
something to play with. He is drawing ET!! (his
newest obsession)


This is what I came home to this evening:
Grandaddy and Caleb rockin' out on
the steel guitar!