Lucas turned 8 today

[Guest guest]

So far it has been a really rough year for Lucas. Can't believe my baby is 8 years old today! The past few weeks have been especially tough as we have been dealing with severe constipation/motility issues and a regression of some skills. Yesterday we had Lucas for a bone scan. I am very interested in the results because Lucas is not really walking like he was at the beginning of the year and since he had a switch of his J-button to a tube. After the bone scan we were sent for bilateral knee x-rays. I know this is not standard procedure so I am definitely interested in the results. Since our 10 day hospital stay from Jan. 28th- Feb. 7th we have had several changes. Lucas ended up with a G -button and J-tube in Jan. of 2001. He ended up with a revision of his J-tube site in Feb. of 2003. This year we ended up with severe motility problems and currently have a G-J tube in his J-tube stoma site. I call it his J-J tube. We also are currently venting his G-button about 20 hours a day and getting about 150 cc's or 5 oz's a day out. We have had to switch from 5 to 7 days a week of Miralax to daily Milk of Magnesia. He still is taking 2 to 3 days to have a bowel movement. When we left the hospital in Feb. he was on erythromycin to aid his motility. It seemed to be helping until he developed an allergic reaction to it about 2 weeks after we started it. On Monday we are headed for a biliary tract scan. Sure hope we get to the bottom of this. We had about a 1 1/2 week occurence of vomiting between 6 am and 8 am despite venting. Fortunately the past 3 days he has not woken up vomiting. On Monday night we put him to bed at 10:00pm he made noises (not crying) until 4:15 am when he finally managed to have a large liquid BM. Tonight was the first dirty diaper since then. (He was an every 1-2 day kind of guy before.) Today school called me because they could not find and believe he may have chewed and swallowed the cap to his drainage bag. He chews on everything and hopefully it was just lost and won't get stuck down the digestive tract. Our GI anticipates possible colon motility studies in his future or botox injections in his pyloric sphincter via endoscopy. Hopefully his year will improve and we can get back to his baseline. I will let you all know what his bone scan shows when I get the results. Thanks for reading,

Loriann