Posted By Posting
Dec 01, 2008
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:
Jedd's Headed to the OR Tomorrow!!!!
Please pray that:

1) He will go with the nurses without any screaming or kicking. We are very worried about this since he is much older this time. And no we can't go with him, we aren't allowed to at our hospital.

2) He will only need to have his fistula reapired and that it will NOT be a full Hypospadias repair. I am really dreading taking care of him again if he needs the full repair, it was NOT fun last time, he was in lots of pain at every diaper change for 2 weeks.

3) His erection test on the table will be okay. They need to do one (don't ask me how they do this...LOL) to make sure he healed straight from the last operation in May.

4) He will not go into vomits-ville like last time after being intibated and extibated....we are fully prepared this time and I have an RX at home for double his current dose of Axid to keep him pain free GI wise from his reflux/GERD.

5) He will continue to eat after surgery. This is the first surgery he will go through being copletely oral, so it will be a true test for his feeding aversion.

6) He will NOT have any post-op swelling like last time. I am going to ask and see if we can go home maybe with an anti-inflamitory this time around.

If he needs the full repair I will take a jog over to the adjoining adult hospital and log on to CB and post an update. Baring that I will update when we come home later in the evening when things settle down some. He is scheduled for 4 hours in the OR just in case it is needed.

They start at 10:45. We have to arrive at 8:45.

Thanks for the thougths and prayers!!!!!!

Please please pray that this will be the LAST one!!!!! We soo didn't want to have to do this one but we had NO choice the last repair failed.

Here is Jedd's CB site:

Dec 01, 2008
Cooper was born 12/19/07. Birth weight: 7lbs10oz. Weight as of 2/11: 8lbs9oz. 6/23: 14lbs12oz! Struggling again 12mo: 18lbs. Breast Fed exclusively, on strict elimination diet until Dec 08. MSPI as well as other food intolerances Diagnosed w/ GER at 5 days following barium swallow. Choking with apnea spells. Ftt. dx w/ Laryngomalacia following brochoscopy 1/29. Aspiration. apnea monitor until 5mo. pH probe 1/29 showed severe reflux. Sandifers Syndrome. lbrady and tackycardia. echo and EKG 2/18: Came back normal! Swallow study 2/29: some NG reflux. Unexplained seizure 4/1. Negative CF sweat test 4/4! EGD 11/19: reflux damage in esophagus. pH probe 11/19, reflux improved. Safe foods: pears, apples, peas, rice, small amounts of chicken, potatoes, and carrots.
Currently drinking Elecare vanilla 30cal/oz and breastmilk.
Meds: Nexium 10mg 2x daily. Carafate as needed, miralaxx as needed, probiotics daily
Oh, I am sorry he is having to have it again. I hope and pray it goes super smoothly. BTW, I think they give them a shot of something to cause the erection. I saw it on a tv show once I think. It is so hard for the los to have trouble with their "private parts" b/c it is so sensitive and painful. Poor little guy. Big hugs to you all!!!
Dec 02, 2008
seamus mama
Seamus was diagnosed with Silent Reflux at 3 weeks. Now he is 14 months, on Prilosec and avoiding dairy,soy,egg. Still nursing. A lot !!!
I will be thinking of you guys..Thats too bad that you arent allowed in there but i guess they have some good reason why(I'd hope!) I look forward to your update.I will be focusing on positive results!
Dec 02, 2008
Maggie is now 3 years old and reflux free (knock on wood). I still check in some to see how everybody is doing :) Hugs to all!
Hugs Jess! I'll be praying for all of you!
Dec 02, 2008
amber f
Good luck! Thinking of you two.
Dec 02, 2008
BRANDON-Zantac and Bethanacol; Neocate formula, 2 sets of ear tubes, Adnoids removed, Vasomotor Rhinits, Asthma. Currently on: Xyzal, Omnaris, Flovent and Xopenex,
AUBREY-Zegerid 2x a day, Soy Milk, Tubes put in and adnoids removed (11-7), Hypotonia, ECI therapy for low muscle tone throughout trunk and hips, oral motor issues and sensory integration issues, delayed speech, Teething, probiotics
PICTURE: Aubrey in her cute cat outfit. If you look you can see how her right foot turns in. She walks that way as well. It is not as exaggerated in the morning's but gets worse in the evenings. This was after her nap.
Good luck!
Dec 02, 2008
Pictured: G'mom w/3 kids. I'm mom to 1 angel Melissa (dec'd 11/92 - hypoplastic left-heart syn.)
2 healthy daughters (knock wood) Cory (16), Kim (11) & Eric (4) diagnosed with e.e. (scoped 8/08), GERD & severe food/seasonal allergies, asthma. Cried non-stop first 17 mths. of life Found out he is allergic to cow's milk, soy, eggs, and peanuts. Takes Prevacid, Neocate One Plus & Flovent.
Hugs and prayers for Jedd (and Mom too). Ellen
Dec 02, 2008
Zack born 09/28/07 @ 31 weeks. Dx silent reflux @ 6 mo. Now not so silent. Switched to Elecare @ 9 mo. On Prevacid 15mg 1x daily. Looking to stop the puke and gain some lbs.
Puke stopped about 24 months and he's learning to eat...very slowly.
Still on prevacid and periactin.
I'll be thinking of you guys! Good luck!
Dec 02, 2008
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.
hugs and prayers....
Dec 02, 2008
mom to 4 kids with probable
Mitochondrial Disease
Dealing with Fundo, J tube feedings,Severe Dysmotility,Aspiration,Asthma,
Connective Tissue Disorder,
Visceral Hyperalgesia, and more
Many meds
Check with your
doctor first!