Pretty much devastated. - Parent-2-Parent & Reflux in Children

**iamblessed** · May 2nd, 2006, 04:50 PM

I spoke to the GI nurse today re: Noah.
In a nutshell, the radiology report from yesterday was reviewed and he spoke to the radiologist who told him "you need to see this for yourself."
She said she and the doc went over and reviewed the film with the radiologist. They are all shocked and at a loss as to what is causing his esophagus to look the way it does. I asked if the GI gave any clues as to what he may think it is and she said he did not and that he was surprised by what he saw.
He wants Noah to have another chest CT (with and without contrast) with the same radiologist THIS THURSDAY so they can see what is going on inside his chest so they can make a referral to a surgeon.
I can not even comprehend right now. I am just devastated. There is NO precedence for this according to the GI.

0102090 · May 2nd, 2006, 05:01 PM

Just wanted to let you know you are in my prayers and thoughts.

Jenna M · May 2nd, 2006, 05:07 PM

I am very sorry that they arent too sure what is happening with Noah. Please keep us posted.

jularias · May 2nd, 2006, 05:45 PM

((hugs)) Prayers and positive thought for you and Noah. I hope they can figure it out and it is something that can be fixed.

Julie

juliefrog6 · May 2nd, 2006, 05:47 PM

I am so sorry. Praying for you.

**merrifay** · May 2nd, 2006, 05:52 PM

I'm so sorry, Merilla, I don't know what to say. I hope that the doctors can get more information from the CT scan. I will keep you and your family in prayers.

**egh02** · May 2nd, 2006, 07:08 PM

I'm so sorry about the bad news. I hope you can find an answer.

**~ Jennifer ~** · May 2nd, 2006, 07:16 PM

Oh Merilla, I am so sorry.

I hope that the chest CT will be able to provide them with some more answers as to cause. You and Noah are close in my thoughts and prayers sweetie. Please keep us posted....and I'm here if you need to chat.

**sknmom** · May 2nd, 2006, 09:17 PM

I"m sorry things are so hard right now. I hope the chest CT goes well and gives you some answers.

**HeatherM** · May 2nd, 2006, 09:21 PM

Merilla,
I'm thinking about you - all of you are in my prayers. I hope they can figure something out for Noah soon. {{HUGS}}

baileysmommy · May 2nd, 2006, 09:40 PM

Ohhh Merilla sweetie!! I am so sorry!!! Are they thinking the same thing agian?? WOW, I am sorry!! I am here if you need me! Huggs to u and Noah!!! I know Noah will be fine, he is one strong little man!!!

ralea03 · May 2nd, 2006, 10:10 PM

Merilla, Im so sorry to hear this. I will be keeping you and Noah in my prayers

**srmina** · May 2nd, 2006, 10:14 PM

I'm really sorry. You are in my prayers.

**~~C n Js Mommy~~** · May 2nd, 2006, 10:14 PM

for you and Noah...Abi too! {{{huggs}}}

kylconkie · May 2nd, 2006, 11:14 PM

I'm sorry. I hope you get a plan of action soon.

**connorsmom** · May 2nd, 2006, 11:46 PM

I'm sorry. I hope you get some answers soon.

littlebit · May 3rd, 2006, 12:06 AM

Oh hun I am so sorry. Prayers are being sent your way!

Tonya

**ChillyJJ** · May 3rd, 2006, 08:56 AM

Merilla.. wow... I hope the CT shows something, anything to explain this, and I hope with everything I have that it's nothing major. Please know we are thinking about you and Noah, and post an update when you can.

mom2tessa · May 3rd, 2006, 09:06 AM

So so sorry to hear that Merilla. Praying for you and your sweet Noah, and Abigail too!

patricksmom · May 3rd, 2006, 11:30 AM

Merilla, I am thinking and praying for you guys. I hope you get some answers soon. Hugs.

May 2nd, 2006, 04:50 PM	#1
iamblessed Community Host of Children's Medical Matters P2P Supporter: Join Date: Jul 2004 Location: In a world all my own! Posts: 3,521	Pretty much devastated. I spoke to the GI nurse today re: Noah. In a nutshell, the radiology report from yesterday was reviewed and he spoke to the radiologist who told him "you need to see this for yourself." She said she and the doc went over and reviewed the film with the radiologist. They are all shocked and at a loss as to what is causing his esophagus to look the way it does. I asked if the GI gave any clues as to what he may think it is and she said he did not and that he was surprised by what he saw. He wants Noah to have another chest CT (with and without contrast) with the same radiologist THIS THURSDAY so they can see what is going on inside his chest so they can make a referral to a surgeon. I can not even comprehend right now. I am just devastated. There is NO precedence for this according to the GI. __________________ NOAH (10/25/99)- 35 week preemie due to HELLP syndrome; asthma, reflux, congenital bronchial stenosis; double aortic arch (surgically repaired 12/1/04), IgG deficiency (outgrown!), hiatal hernia, possible seizure disorder undiagnosed; extrinsic esophageal compression, causing dysphagia and oral aversions: all around great kid and destined to be a 1st round draft pick! PRINCESS ABIGAIL (10/17/01)- chronic sinusitis, chronic ear infections, enlarged adenoids & tonsils (revised & removed 12/16/05), ecsema, asthma, chronic abdominal pain and re-diagnosed refluxer: Noah's biggest fan and the best little sister around! Noah's Website

May 2nd, 2006, 05:01 PM	#2
0102090 P2P Supporter: Join Date: Mar 2004 Location: California Posts: 501	Re: Pretty much devastated. Just wanted to let you know you are in my prayers and thoughts. __________________ Heidi wife to Mike mom to: Megan 9 Madison 7 Noah 2 years old

May 2nd, 2006, 05:07 PM	#3
Jenna M P2P Supporter: Join Date: Jun 2005 Location: Ontario, Canada Posts: 4,469	Re: Pretty much devastated. I am very sorry that they arent too sure what is happening with Noah. Please keep us posted. __________________ WWW.caringbridge.org/visit/amberlynnmooney Jenna 28, Stickler Syndrome type III & Michael 24. Blessed parents of AmberLynn (Bryn) (22mos)16/04/04 Nonsense Mutation of gene 6P21.3 resulting in Stickler Syndrome with Pierre Robin Sequence. Aidin 5 Nonsense Mutation of gene 6P21.3 resulting in Stickler Syndrome Madylan 6 & Adam, 10. Margaret Adarah Rose ~*Passed~*

May 2nd, 2006, 05:45 PM	#4
jularias Join Date: Nov 2004 Posts: 457	Re: Pretty much devastated. ((hugs)) Prayers and positive thought for you and Noah. I hope they can figure it out and it is something that can be fixed. Julie

May 2nd, 2006, 05:47 PM	#5
juliefrog6 Join Date: Aug 2004 Location: Washington Posts: 2,259	Re: Pretty much devastated. I am so sorry. Praying for you. __________________ Julie Mom to Nathan 4/7/00 (Intractable epilepsy, CP, SOD/ACC, GERD, polycystic kidney, ostoepenia,chronic ear infections) ketogenic diet(weaning off after three years ), vegal nerve stimulator & G-J tube Amber 9/6/01 red headed princess Jared 6/10/05 Bundle of joy and happy puker




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May 2nd, 2006, 05:52 PM	#6
merrifay Community Host Community Host of Children's Respiratory Disorders P2P Supporter: Join Date: Oct 2004 Location: Corpus Christi,Texas Posts: 1,907	Re: Pretty much devastated. I'm so sorry, Merilla, I don't know what to say. I hope that the doctors can get more information from the CT scan. I will keep you and your family in prayers. __________________ Mary, wife of Corbin mommy to: Caedon, "Buddy," healthy, my little man, 10-17-00 Caeley, "Precious," my princess, 12-01-03 rt. CDH, tracheobronchomalacia, trach, vent, reflux, g-j tube...meds: reglan, prilosec, aldactone, Diuril, lasix, albuterol puffs, flovent twice daily, feeds: 30 cal Elicare: am 55ml/hr, pm 25ml/hr, visit Caeley at: www.caringbridge.org/tx/caeley "Now unto Him that is able to do exceeding abundantly above all that we ask or think, according to the power that worketh in us," Eph. 3:20

May 2nd, 2006, 07:08 PM	#7
egh02 Community Host of the Towne Centre and the Welcoming Corner. P2P Supporter: Join Date: Jan 2005 Location: Kansas Posts: 4,111	Re: Pretty much devastated. I'm so sorry about the bad news. I hope you can find an answer. __________________ Liz- Wife to Big Joe ( served us all in Iraq April 2003- April 2004 and Jan 2005 to Feb 2006 ) Little Joe (7/7/03). Severe reflux, gastroparesis with other motility issues, possible protein allergy. GJ tube placement (11/03) first fundo (1/04) pyloroplasty (1/04) second fundo (3/05). 100% tube fed takes prevacid, EES, adarax, periactin, bentyl, zelnorm, zyrtec, and miralax as needed. Visit Little Joe at: http://www2.caringbridge.org/ks/joe

May 2nd, 2006, 07:16 PM	#8
~ Jennifer ~ Host Coordinator & Community Manager Community Host of the Towne Centre Join Date: Nov 2003 Posts: 12,545	Re: Pretty much devastated. Oh Merilla, I am so sorry. I hope that the chest CT will be able to provide them with some more answers as to cause. You and Noah are close in my thoughts and prayers sweetie. Please keep us posted....and I'm here if you need to chat. __________________ Jennifer... Mom to Tyler (10yo Refluxer & DGE) Prevacid, Zelnorm, Miralax, Singulair, Allegra, Nasonex, and weekly Allergy shots Community Manager Host Coordinator & Community Host Towne Centre If you need assistance,help with the forums,or have questions please contact the community care team. communitycare@parent-2-parent.com

May 2nd, 2006, 09:17 PM	#9
sknmom Community Host of Towne Centre, Fundoplicaiton Issues and Middle & High School Years forums. Join Date: Nov 2003 Location: Southeast PA Posts: 8,186	Re: Pretty much devastated. I"m sorry things are so hard right now. I hope the chest CT goes well and gives you some answers. __________________ Patti mom to Spencer - age 17 - really loveable kid despite being a teenager! Refractory GERD, severe esophageal dysmotility and aspiration due to redundant neoesophagus, gastroparesis, chronic aspiration pneumonia, restrictive lung disease, pulmonary abcesses due to aspiration, GJ button recently changed to MICKey G button!! 1/93 Nissen fundo 1/94 uncut Collis gastroplasty-Nissen fundo with pyloroplasty 11/94 cut Collis gastroplasty-Nissen fundo w/G-tube 8/97 partial esophagogastrectomy and modified Belsey fundo 12/00 esophageal resection with jejunal interposition (esophageal replacement) 7/01 gastric augmentation using transverse colon (stomach enlargement) 2/04 Open lung biopsy

May 2nd, 2006, 09:21 PM	#10
HeatherM Community Host of the Feeding Issues & Aversions forum P2P Supporter: Join Date: Jan 2005 Location: Cincinnati, OH Posts: 2,652	Re: Pretty much devastated. Merilla, I'm thinking about you - all of you are in my prayers. I hope they can figure something out for Noah soon. {{HUGS}} __________________ Heather Caroline, 12/5/02 great big sister! Will, 10/16/04 partial chromosome 4q deletion, past hx of aspiration, Duane's Syndrome (eyes), mildly hypotonic and always on the go! NG until 7 months old - G Tube placed Passed swallow study 9/05

May 2nd, 2006, 09:40 PM	#11
baileysmommy P2P Supporter: Join Date: Feb 2004 Location: NC Posts: 976	Re: Pretty much devastated. Ohhh Merilla sweetie!! I am so sorry!!! Are they thinking the same thing agian?? WOW, I am sorry!! I am here if you need me! Huggs to u and Noah!!! I know Noah will be fine, he is one strong little man!!! __________________ Melissa- Tristan(7) asthma, wild man: John Bailey(3) severe asthma, Gerd, fundo x's 2, pylorplasty, g tube,Bronchiolitis Obliterans, IV steroids, IVIG monthy, my lil hero. http://www2.caringbridge.org/ca/bay/

May 2nd, 2006, 10:10 PM	#12
ralea03 P2P Supporter: Join Date: Jul 2004 Location: MN Posts: 2,117	Re: Pretty much devastated. Merilla, Im so sorry to hear this. I will be keeping you and Noah in my prayers __________________ Rachel Mommy to: Taylor (12-18-95) ADHD,allergies,asthma Meds: Zyrtec, Naxonex, Advair and Adderall Olivia (6-7-02):Gluten Intolerance, milk & soy intolerance,GERD, RAD, chonic sinus infections, fat malasorption, primary immune deficiency, FTT, Possible bacterial overgrowth and dumping syndrome. Adenoidectomy 2/04, Pyloroplasty 12/04, Sinus surgery 12/04 & 12/05, Fundo 3/05 Meds: Nexium, Creon, Zyrtec, Carafate, Flovent and Creon 5 Sydney (9-18-03): Former FTT, GERD,NG 4/04-7/04. Fundo 7/04, G-tube 7/04-12/05. Meds: Prevacid Visit Olivia at: www.caringbridge.org/visit/oliviachiappetta

May 2nd, 2006, 10:14 PM	#13
srmina Community Host of Tube Feeding Issues and Adaptive Equipment P2P Supporter: Join Date: Apr 2004 Location: Chicago Posts: 11,054	Re: Pretty much devastated. I'm really sorry. You are in my prayers. __________________ Susan, mom of Sameer , 3/4/05, happy former spitter Karuna , 7/6/03, G-button Main Diagnoses: Hypoxic Ischemic Encephalopathy, Cerebral Palsy, Severe GERD and associated neurogastro issues, Seizure Disorder (type undiagnosed), Laryngomalacia, Vision Impairment Current Meds: Prevacid in Caracream, Levsin, Zantac, Lactulose, Keppra, Neurontin, Zanaflex, Botox Injections, Off Klonopin for now! Visit Karuna at http://www.karuna.agrawalkids.com

May 2nd, 2006, 10:14 PM	#14
~~C n Js Mommy~~ Community Host of the Towne Centre. P2P Supporter: Join Date: Dec 2004 Location: Levittown, Pennsylvania Posts: 7,362	Re: Pretty much devastated. for you and Noah...Abi too! {{{huggs}}} __________________ ~~ Trish ~~ 5-9-06 ~ 34" ~ (+)23lbs 2oz!!! Caitlynn Alyce ~ 8-16-1998 ~ Happy 2nd Grader!!! ~~~~~~~~~~~~~~~~~~ Jacob Samuel ~ 9-25-2004 ~ Ongoing issues: FTT, Severe Speech Dealay, 100% G-Tube Fed, Hypotonia, GERD, ILD, Asthma and a UnDx'ed Ligament Disorder. On Flovent 2-3x/day, Albuteral PRN, Previcid 1.5 Solutabs/day, Zantac & Singulair Receives PT 2x/Month, OT & DT 1x per week Sure Steps DC'ed 5-2006!!! ~~~~~~~~~~~~~~~~~~ To the world you may be one person, but to one person you may be the world!

May 2nd, 2006, 11:14 PM	#15
kylconkie P2P Supporter: Join Date: Nov 2004 Posts: 1,071	Re: Pretty much devastated. I'm sorry. I hope you get a plan of action soon.

May 2nd, 2006, 11:46 PM	#16
connorsmom Community Host of Children's Behavioral Issues and the Elementary School Years P2P Supporter: Join Date: Feb 2005 Location: Texas Posts: 2,928	Re: Pretty much devastated. I'm sorry. I hope you get some answers soon. __________________ Melinda- Wife to Dale (Married 10-3-92) Proud Mom to: Sarah Corine (7-24-96) Viral meningitis at 3 mos., ADHD, CAPD (Central Auditory Processing Disorder), seasonal allergies Takes Paxil, Concerta, Zyrtec(as needed) Charles "Connor" (6-4-01) Reflux, Asthma, Allergy to mold and Oak trees, hypogammaglobulinemia Takes: Septra, Nexium, Pulmicort, Rhinocort, Hydroxizine, allergy shots, saline sinus rinse (Albuterol or Xopenex as needed),

May 3rd, 2006, 12:06 AM	#17
littlebit Join Date: Mar 2006 Posts: 84	Re: Pretty much devastated. Oh hun I am so sorry. Prayers are being sent your way! Tonya

May 3rd, 2006, 08:56 AM	#18
ChillyJJ Community Host of Crafty Creations and Behind Closed Doors Join Date: Nov 2003 Location: Ontario, Canada Posts: 7,396	Re: Pretty much devastated. Merilla.. wow... I hope the CT shows something, anything to explain this, and I hope with everything I have that it's nothing major. Please know we are thinking about you and Noah, and post an update when you can. __________________ Jennifer B - SAHM to Michael (7/18/97) and Connor (3/22/01) "You may house their bodies but not their souls, For their souls dwell in the house of tomorrow, which you cannot visit, not even in your dreams." - 'The Prophet' by Kahlil Gibran Come see what's new in the Crafty Creations forum!! For more adult conversations come see what's *Behind Closed Doors* (email comments@parent-2-parent.com for password)

May 3rd, 2006, 09:06 AM	#19
mom2tessa Join Date: Jul 2005 Location: OH Posts: 2,488	Re: Pretty much devastated. So so sorry to hear that Merilla. Praying for you and your sweet Noah, and Abigail too! __________________ Heather B Mom to:Tessa Lynne B 11/8/03 Dx: CP, seizures,reflux, gbutton,urinary refluxWeb site: http://www.caringbridge.org/cb/inputSiteName.do?method=search&siteName=tessabrown ing

May 3rd, 2006, 11:30 AM	#20
patricksmom P2P Supporter: Join Date: Aug 2004 Posts: 387	Re: Pretty much devastated. Merilla, I am thinking and praying for you guys. I hope you get some answers soon. Hugs. __________________ Jenny Mom to Patrick - 6-26-02 Fundo and pyloromyotomy (both failed) subglottic stenosis (3 tracheal dilations), LTP to fix stenosis, laryngeal cleft repair (Type 2), LADD Procedure, Undescended Testicle and Hernia Repair Meds - prevacid, pepcid, miralax, singulair, Triaminic allergy, pulmicort, zopenex(as needed)

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