Re: Re: Cyclic vomiting issues again/Heidi

[Guest guest]

Hi Heidi,

Yes, Lucas has had meds come back up through his G-button. However, I only noticed it once when giving him tylenol because of the color of it being so distinct. We have not done anything about it. Currently we do not even replace his G-tube contents. I know with being a nurse that we probably should but Lucas can not handle the volume he would need. We can dump anywhere from 150 to 250 cc per day. Also Lucas does not have a central line so we do not have any other options right now.

Lucas is nonverbal so when nausea strikes he can't tell us. We do not use any antiemetic/antinausea meds at this time. He does have Prevacid which we do use. Lucas also currently has a J-J tube. This is put in in radiology. It is a Ross tube inserted inside another brand of tube and feeds him further down in his jejenual tract. He used to have a button until he had to have a new stoma since he ended up with a fistula. Since then we had a button for a short time and then he had so much leakage around the site they went to this other tube. I refused to reinsert any J-buttons since Lucas had so much pain with the changes. He had his first J-button pulled out at school. It took 5-6 hours and a trip to ER to get it in.

Lucas was on Bethanachol for awhile to help with his stomach emptying and for about a year he has been on Mestinon to help with motility. Neither were perfect meds but so far we have avoided TPN. We did spend about 10 days this year as an inpatient and that is when we went home on venting of his G for 14-20 hours a day.

Feel free to contact me with any further questions.

Loriann

[Guest guest]

Heidi,

No it was not a typo. Lucas does have a J-J tube. This tube is in a Jejunostomy stoma and extends maybe 6-8 inches further down in his jejuneum. We were changing Lucas dressing every diaper change or sooner. My mother made a wrap that holds the tubing tight around him so he can't pull at it. It is made out of a swimsuit material and attaches with velcro around the front. We were changing his shirt and wrap and 2 2x2 split sponges from his site several times a day that would be soaked. Just about a month ago we were able to decrease the leakage by inflating the balloon from 3-4 cc up to 8 cc's. (He had to have radiology studies done to make sure he was not going to obstruct.) In addition we need to put a piece of pink tape around the tube on the other side of the triangle to keep it tight against his skin and prevent leakage. Also we apply strands of kaltostat (it is actually seaweed dressing) around his tube underneath the triangle to absorb more of the intestinal juices.

If we begin to have further issues the surgeon will change his tube to a mushroom type tube (also known as a ponsky(sp?) tube).

I do agree there are few other kids who drain G-tubes on a regular basis. I know we are fortunate we have not had to go to tpn. Lucas chews on anything that he can reach. He even swallowed the bolus end of a Mic-Key extension (what used to be blue and now is a clear opaque piece of stiff plastic). That took 3 months to go through. Fortunately it did not cause more extensive problems.

Sure hope gets better and her GI system improves.

Loriann

mom to 3 boys- & 12 yrs old and Lucas 8 years old with suspected mitochondrial encephalomyopathy, hypothyroidism secondary to pituitary malfunction, cortical visual impairment, abnormally slow EEG, ataxic, global developmental delay, impaired motility, GERD, J-tube fed since 4 years of age but has the sunniest disposition