Motility issues Hospital stay (long)

[Guest guest]

Just had to write about a frustrating past few months. We just returned home today from a 10 day stay at Children's Hospital of Wisconsin (CHW) with Lucas. We seemed to have hit another bump in the road that came out of nowhere. I had been so excited since we had begun G-tube feedings after about 3 years of J-tube feedings. Lucas tolerated 2 months of them and then the vomiting started and other complications set in. We are now feeding him through his J-tube which is now a makeshift tube. He had a tube which is normally designed to be put in the stomach and goes into the intestine (a G-J tube). Instead he has a G-J tube which is put in his jejuneum (J) tube site and the other portion of the tube goes further into his J-tube site. Where the further tube extended into was causing the bowel to dilate (expand) and when we turned him on the table (during an x-ray) it would then drain.

After all is said and done we came home with feeding him 22 hours a day instead of a previous J-tube rate of 17.5 hours a day. We are also draining his G-button (seperate stoma) constantly. He had a shorter J-J tube put in to hopefully do what it needs to do without the dilation. He was started on Flagyl for 10 days to help if bacteria overgrowth was causing his abdominal pain and inflamation. He also was started on Erythromycin 4 times a day for motility. The doctor believes he may have reverse peristalsis. (He didn't think feeding him upside down would help. LOL. Sorry if you lose your sense of humor you really end up a basket case.) However, the Dr. also said that the effectiveness of the erythromycin could be lost as soon as 2-3 weeks whereby it would be a trial of another med. Lucas' walking took a nose dive also but we are on an upswing just before we left.

The most frustrating thing is that he woke up one morning vomiting and things rolled down hill after that. He had no other symptoms such as acute illness (cold, virus, etc.). We are grateful that we made it on Lucas' wish trip to FL via the Sunshine Foundation without major illnesses. We were gone Jan. 23-26th. We are quite disappointed though because the doctor feels that returning to G-tube feeds probably will never happen. Fortunately, we have avoided TPN for now. Thanks for listening/reading.

Loriann--(mom to 3 boys: & 11 yrs old (ADHD) and Lucas more highly suspicious of mito with Cortical visual impairment, Hypothyroidism secondary to pituitary malfunction, global developmental delay, abnormally slow EEG, nontalker, J-tube fed with GERD and severe dysmotility)

[Guest guest]

Loriann, Sorry to hear about all of Lucas' setbacks. I hope he continues to improve from this point! I will keep you guys in my prayers=)

e, Chelsea's mom(nonspecific mito)

[Guest guest]

Loriann, Sorry to hear about all of Lucas' setbacks. I hope he continues to improve from this point! I will keep you guys in my prayers=)

e, Chelsea's mom(nonspecific mito)