Posted By Posting
May 01, 2009
mommato3
Holden's scopes updates
Well, I have good news. The scopes came back and look really good. Of course his LES muscle was wide open instead of closed but it looks like the Prevacid must be working. We will have to wait for biopsies to come back though. The pulmonologist called me personally last night to tell me the results of the lung wash had come back, my heart stopped b/c these big docs only call with bad news right? Well he said much to his dismay the lung wash came back stone cold normal (no bacteria which means no aspiration of formula). So I asked him if there were any life threatening events going on with all that reflux and he said no more than the drive from Louisville to Cincinnatti down I71. WooHoo!! I asked him why my GI was so quick to tell me that they were going to have to do a nissen fundo and in fact before the scopes his nurse came into same day surgery to see me and was still talking about having to do a nissen or a GJ tube. I told her to "hold her horses" and see what the scopes reveal that we have been praying that there would be no damage then we WOULD wait it out. Well, he got proved wrong. It was a different GI that did his endoscopy and after going into Holden all three docs (ENT, pulmo, and different GI) were against rushing into anything. They told me the GI was just going off the probe results which were very impressive but after they examined him there is a lot more to the story than a piece of paper and he certainly is much scarier on paper than in person. So I guess we will just be a part of the GERD club for quite some time. I wish I could change GI docs but no one in town will do the meds as high as holden needs so he prob. would end up in surgery and Cincinatti doesn't like for you to change docs in the department especially since Holden is part of the feeding team which basically means he has to see multiple specialists and they all work together collaberatively to come up with a plan. They will meet next Wed. and come up with a plan for Holden to help him. Thanks for your support. I have a question about the sleep study report but I will post that on another thread.
May 01, 2009
jeddsmommy
Jessica, Mommy to Jedd, severe reflux, severe food and oral aversions, Finally G tube free!!! VSD repair 4-24-07 (open heart surgery), hypospadias, repaired 3 times and Ear tubes Visit Jedd at his CB site: www.caringbridge.org/visit/jedd
YAY!!!!!! That is GREAT news actually!!!! Sounds like a very smart Pulmo, wait and see is a good option right now. Time, yes time, is a GERDlings best friend and it sounds like they are giving you that. :-)
May 01, 2009
jenrackley
PAGER Volunteer Services Coordinator
Nutritionist
Melina 7/24/02 now reflux free!!
TWINS:
Ella 5/3/05 GERD, asthma, hypotonia, food intolerances, esophagitis, IBS //
Ava 5/3/05 asthma, food allergies
Pic: My girls! They are getting so big!
Yippee!!! I am so glad the scope showed the meds were working. It sounds like you finally have a good plan to take care of his GERD. You were smart not to rush. :) Praying they will be able to treat him so he feels well consistently!
May 01, 2009
mom2adriane&morgan
Adriane Reese 05/16/07; seemingly healthy when born; diagnosed with MSPI, severe Reflux, Apnea, Ashtma, Epilepsy, and severe food allergies(rice, corn, milk, soy, eggs, oats, wheat, beef, chicken, squash, pumpkin, avocado, etc.);On apnea monitor, seems to be tolerating RCF w/carbohydrate mixed in; on Zyrtec, Xopenex, Prevacid
That is wonderful news. I hope that all he needs is time. Hang in there! You are doing a great job!
May 01, 2009
kubicki5
Julie - I have three children. My youngest Katie is my refluxer. My first Ben was very colicy and is ADHD. My middle Jakob is pretty easy going. Katie had it bad as a baby no sleep for two years. She was on Nutramagin, Prevacid and Zantac. Thought we were through it but after age three it came back big time. After her scope she was put on Prevacid 45mg a day and mylanta as needed. Scope was in Sept. Showed damage in stomach and espophogus. It took about 7 months of medication and Reflux diet for her to start feeling better.
Yay!!!!!!!!!!!
Check with your
doctor first!