comments/advice anyone?

So we are still having problems with retching and vomiting after giving Ryan’s medications.  I found some very interesting articles that I that I think apply to his situation and I’m really curious what you all think.  If you have an opinion or experience with any of the things we are facing, please comment.  We are grasping at this point and trying to find as much info as we can so when we go to Ryan’s GI appointment next week, we are armed with as much education as we can get.  Everyone who has dealt with any kind of chronic problem knows that doctors simply don’t know everything as much as we’d like them to.  And of course being a nurse I know that first hand from working in the ER.  God bless them, we have some wonderful doctors but they simply don’t have all the answers (which we definitely figured out once again during our most recent time in the hospital).  So, we feel like we need to gather as many ideas as we can before we head into next week’s appt.  Of course our goal is to stop the retching and keep Ryan from the pain he is having when we give his meds.  Again, quality of life.

The articles are below.  Read them if you have the chance and like I said, feel free to leave comments because we’d love to hear your opinions and advice.  And once again, in case any of you can’t remember or don’t know what is going on, here it is in the short version.

After coming home after four weeks in the hospital – brain surgery, ileus, three different hospitalizations, two ER trips, a g/j tube surgery, two weeks on TPN and finally getting Ryan’s small and large intestine to finally work but having severe gastric emptying issues and him refusing to eat at all now – Ryan is getting formula 24 hrs a day through a feeding pump at 70 cc/hr which gives him approx 1500 calories a day and is the only nutrition he gets.  He also gets five seizure medications plus one for mood.  The seizures are fairly controlled now (which might be the honeymoon period which lasts about 2 months for him after starting a new medication) since he started Depokene post op.  But he is retching for up to an hour starting 15-30 minutes after we give his medications in the morning and at night – all given very slowly with his feeding pump turned off for an hour.  Well we’ve tried everything under the sun to stop the retching and nothing is working – the list of what we’ve tried in the past two weeks is long.  He also retches if we make him change positions within an hour of giving his meds – carrying him from the couch to his bed or even just going from lying down to sitting.  That tells me this is a nerve issue causing his intestines to be very sensitive to any change. 

We simply are grasping for anything that will help get this retching stopped.  We both have very little hope we’ll get Ryan off the feeding pump and if we could just get him comfortable we’d be thrilled with that.  OK enough explaining.  Here are the articles I found that are interesting and maybe helpful to what Ryan is experiencing. 

http://www.articles.complexchild.com/00006.html

http://www.wellcome.ac.uk/en/pain/microsite/science3.html

http://www.articles.complexchild.com/00010.html

Otherwise things are good here.  The kids are on spring break all week and are constantly coming and going with their friends.  We splurged (not practical but very much needed) and took the older three kids to Omaha yesterday.  We saw a movie, went out for a nice dinner, spent the night at a newer, very comfortable Embassy Suites, swam, went to Defy Gravity (a trampoline jumping place that was very fun), had a wonderful time together focussing on the older kids.  Our sweet nurse friend, Aunt Candy, stayed with Ryan and did a fabulous job taking very good care of him.  I jokingly told her before we left “now make sure you don’t play with him constantly but let him take a nap when he’s tired”.  She is so wonderful and loves Ryan dearly; he was definitely in very loving, capable hands while we were gone.  What a blessing!  Thanks, Candy!  We love you.

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2 thoughts on “comments/advice anyone?

  1. Maybe it’s something as simple as changing the formula he is ingesting. Infants who have allergies, or sensitive digestive systems will display similar symptoms. Retching can occur after being fed, being moved, or while being fed. Bloating, weight loss, diarrhea, and constipation (slow bowel or blockage). Just a thought. God Bless.

  2. .
    I just want to say, it is my joy that I take care of Ryan, he is such a awesome person. He as taught me over and over how we should be happy with the little things and not always wanting more. He also is a wonderful walking buddy.
    Seeing the 5 of you when you guys came back was awesome, looking at you guys seeing as least for a short time you guys were able to enjoy each other.
    I learn from all 6 of you. You guys are a blessing to me.. Ryan have mom give you a nosy from Aunt Candy

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