Posted By Posting
Jul 30, 2007
Ben is a fantastic 4 yearold that has been suffering with undiagnosed GERD. He has CP but has defied everyone who has ever said "He will never...". He is also my angel.
Fundoplication for aspiration pneumonia
We are two days away from a fudoplication to help deal with aspiration pneumonia. I have been info cramming because this has been an imposiable decition for me to make. My 4 year old has had an upper GI (constant reflux), bronchoscopy (lungs full of puss no pulminologist could hear and evidence of gastric content) and a pH probe (the "worst" our doc "has ever seen"). The decision seems simple-try the fundo and protest his airway. The problem is that he has mild hypotonal CP and he is healthy. We haven't had pneumonia for almost a year and clear lungs since April. We have reduced aspiration coughing almost completely with Prilosec. Does anyone know if there is evedence of older children outgrowing GERD? If the effects of pH neutral gastric content is still really bad on lungs if he seems to remain healthy? If there has been successful use of alternitive medicines to deal with these issues? Any info would be great! Shannon aka Ben's Mom
Aug 08, 2007
jan gambino burns
Jan Gambino, M.Ed
The Reflux Mom
P.O. Box 171
Arnold, Maryland
21012 USA
Mom to Rebecca: reflux and asthma, post nissen fundo, post g tube, post FTT and Jenna: reflux, asthma and POTS.
Author of Reflux 101: A Parent's Guide to Gastroesophageal Reflux.
How is Ben?
Hello! How is Ben doing? I hope his is healing well. Jan
Aug 08, 2007
Ben is a fantastic 4 yearold that has been suffering with undiagnosed GERD. He has CP but has defied everyone who has ever said "He will never...". He is also my angel.
Ben update
I have been thinking of writing an update but have been a bit wrapped up in this. Ben is doing great! We had the surgery at U of M last Wednesday. Everything went smoothly for the surgery but it took 4 hours plus a little. He was pretty uncomfortable and confused in recovery saying break-your-heart things like "I want to feel all better" and "I want to be happy" but we made sure that he was comfortable and moved into his room. He learned the hard way the next morning that it was a bad idea to pull out your IV. That was our only bad experience but I think that it measures up as "pretty bad". You see, UofM has an IV team that works the main hospital and the childrens hospital(Mott) so you have to wait for the team to make it's way to you for a new IV. We had a STAT order for a restart because he couldn't take anything orally and it took 4, yes 4 hours to get a new IV. That means that he was without pain meds and fluids for almost 6 hours! He was getting IV pain meds every 2-3 hours and was supposed to get Zofran during that time so he started retching just a little but it caused him enough pain that he was holding his breath because it hurt to breath so in turn his sats were in the toilet. It was a pretty brief (half hour) time that was BAD but I was still pretty hot about the whole thing. The rest of Bens recovery has been great! He came home Friday on soft foods and is now just stir crazy being trapped in the house. He is really picky so his choices of food are yogurt, milk, pureed fruits and veggies. That is all we have been able to get him to eat so we are eating supper high cal yogurt and getting pretty creative to add cals to the pureed stuff. We did not get a g-tube so we are doing our best to minimize weight loss. He has gained a ton of weight in the last 9 months (9 lbs.) so now is the best possition we have been in to have some weight loss. It took him a year to gain 3lbs. and we jumped for joy when he hit 32lbs. at 3 and 10 months. Two weeks ago he was 41lbs and 43 1/2 tall. He had a GI bug that took 2 and now he has lost 2 more since surgery but he is still trucking along. I realize that I have been going on about stuff that this group probably has a lot of experience with but I appreciate the opportunity to ramble. This has been sooo much better than the pictures I had painted in my head because we have had very little retching and good pain control but this is still a really big deal. We are praying that it is all worth it to him in the long run. Time will tell. Thanks, Shannon
Sep 04, 2007
gabe's mom
Hey there..
We have surgery scheduled for our 3 1/2 year old. I am curious to see how things are going with you??
Sep 05, 2007
Ben is a fantastic 4 yearold that has been suffering with undiagnosed GERD. He has CP but has defied everyone who has ever said "He will never...". He is also my angel.
Ben at 5 weeks
I almost don't want to tell you how he is doing because we seem to be out of the norm. He is doing great. His appetite was affected as well as his food choices limited so he has lost about 5 pounds overall. He has low muscle tone due to CP and has become weaker, a bit tighter and his stamina is decreased but this can all be tied to not enough calories and allowing him to heal. It has been rough trying to get Ben to eat because he is so picky but we have learned a few tricks and added food ahead of schedule so he is not losing weight anymore. His low tone starts at his trunk so we had backed off his PT but brought that back ahead of schedule as well so we are making gains in the right direction. Ben has had very minimal retching. The day of surgery he had a short episode and since then it has only been one gag at a time about 5 times. I read about children retching for months so we know how lucky we are. He says that his boo boo's still hurt and doesn't want anyone else to touch them but he touches then to count them. All of his lap sights are healing well but he has lost so much weight that you can see the internal stitches and that is creepy. He calls them "bumpy boo boo's". We are adding foods as tolerated and Ben is eating grilled cheese, pizza and french fries. We are also in the process of weaning from our last med which is Prilosec and here is where the bad news starts. Lowering the dose has shown that he is most likely still refluxing and had what sounded like a big aspiration cough last Sat. night. We are wishing that it was spit down the wrong pipe but we know that it most likely wasn't. In Ben's case, he had over 400 episodes of reflux during his pH probe so this could still be a "success" in the eyes of the docs but we are nervous about how well the fundo will work for Ben. This experience has been so easy for Ben compared with what it could have been but it has still had a huge impact on him. I hope that hearing the good side of an initial outcome has helped a bit. When is your son's surgery scheduled for? I was a mess pretty much the whole time between scheduling the surgery and going through with it so I feel for what you must be going through. Let me know if I can help with more info or if you have any other questions. Shannon
Check with your
doctor first!