esgf
- Nov 11, 2010 5:07 pm
(#113 Total: 171)
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Abigail's Mom (29 weeks, 3/21/05) |
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Merri, I am sorry it took me so long to find your update. Buddy has been through so much over the years. I was so hopeful that his last surgery would be his last. I hope that they come up with a thorough plan for all of the issues if they have to go back. Please keep us updated and take care. Our thoughts and prayers are with you.
Ellen
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7angels
- Nov 21, 2010 9:43 pm
(#114 Total: 171)
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Tucker's mom--After they did Buddys nissen that is when they discovered that he has a lazy esaphagus. At least that is what they say. He had no feeding issues prior to the nissen. When they did the first barium swallow (after the nissen) it took over a minute for the barium to pass from the esaphagus to the stomach. They just did another barium swallow last week and there is still a delay but not as long. There is also some reflux going on. They are going to schedule for a bronchoscopy and an endoscopy. Dont know when though. I will keep you posted.
Ellen--I am so glad to hear from you. How are things going with you guys? The doctors have decided to rescope Buddy to see how loose the nissen has become and how bad the reflux is. He has already had H-pylori twice in his lungs from the reflux. H-pylori is a bacteria that is found in the stomach and if not treated it can cause precancerous cells. We definitely dont want that to happen. I will keep you posted.
Merri
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esgf
- Nov 21, 2010 11:39 pm
(#115 Total: 171)
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Abigail's Mom (29 weeks, 3/21/05) |
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Merri- I hope the scope goes well. Please let us know. I know that is what they were looking for when they did Abigail's so it is a good test for that. Abigail is doing well on the GI front. She still vomits but not as much. Mainly she has learned to swallow it (I know, gross). I can hear her doing it but it mostly only occurs with her calorie drink which is super thick so I am not too worried. THis summer she finally started gaining weight consistently so that is a burden lifted,f or now. She has run into some new developmental roadblocks but that is for another day.
Take care,
Ellen
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7angels
- Dec 10, 2010 4:12 pm
(#116 Total: 171)
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Ellen
Last week they decided to to a sleep study on Buddy. I got the results back yesterday. He is definately refluxing as well as has obstructive sleep apnea to where his O2 sats drop below 90. 3 mins was the longest period of time this happened. It would have to be for 10 mins to need to sleep with oxygen. He has already had his adnoids out and tonsils out so we dont know what the obstruction is. We do know he has nodules in both lungs and esaphagus. They could be getting larger due to the reflux. He is scheduled to see ENT soon. In the meantime the team is going over everything to decide what to do next. Such as a bronchoscopy endoscopy ph probe and lung wash and biopsy. Right now we are at the doctors office again because he might have pnemonia from aspirating the reflux. I will keep you guys posted.
Have a Merry Christmas!
Merri
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7angels
- Dec 10, 2010 4:58 pm
(#117 Total: 171)
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well, the doctor just put buddy on 10 days of augmentin so yes it is a pnemonia. again. YUK!!!
merri
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esgf
- Dec 11, 2010 2:17 pm
(#118 Total: 171)
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Abigail's Mom (29 weeks, 3/21/05) |
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Merri,
I am so sorry he has pneumonia again from the reflux. It is amazing how much havoc acid can reak on your system. One of our graduate students still battles this today. The good news of course is that she is happily married and getting a PhD, the bad news is that she is still undergoing procedures.
I hope the ENT has some ideas about Buddy's apnea. 3 min sounds like a long time to me....
I hope he feels better soon.
Merry Christmas.
Ellen
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7angels
- Dec 18, 2010 9:15 pm
(#119 Total: 171)
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Ellen
Buddy seems to be feeling better. He still has a nasty cough but his o2 sats are doing much better. He sees pulmonology on jan 11th. hopefully we will get some answers then as to what they plan to do for buddy in the near future.
Have A Merry Christmas
Merri
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momofTeagan
- Jan 29, 2011 4:35 am
(#120 Total: 171)
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I have a 9 yr old who at 3 months was diagnosed with a double aortic vascular ring. Had it repaired at 4 months and life has been fun since..hospitalized for respiratory distress poor pft tests but say not asthma just vascular damage kid has chronic croup I have a standing dex order for him!!he is going for a progressive exercise pft test soon he has no exercise tolerance and he was t o outgrow the tracheomalacia by 2!!!..so frustrating as I feel he is poorly managed the kid sounds like a 100 yr old smoker anyone else have similar issues? 
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stacyat
- Jan 29, 2011 6:21 pm
(#121 Total: 171)
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Mom to Emilyn and Hailey (our 20 week angels) and Elim (our 38 week, full term miracle)! |
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I'm so sorry of the breathing problems that Teagan has been having since he was a little guy. I don't have any experience with this but wanted to welcome you to Share! I'm sure other moms will pop in here that have more experience than me.
Stacy
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7angels
- Feb 11, 2011 4:06 pm
(#122 Total: 171)
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MomofTeagan
My son did not have the vascular rings but he did have laryngomalacia and tracheomalacia. They also said that he would outgrow it by age 2. Well he will be 5 next week and he still is at 20% occlusion. Its not very noticable unless he has been playing hard or is sick. Ellen
The doctors have decided to do a ph probe on Buddy. After that they will do the bronchoscopy and endoscopy. Then finally they will redo his nissen which will result in being on the feeding pump 16 hrs a day. Right now he is on the pump 8 hrs at night time. His reflux is really causing some problems with aspirating and erosion even though he is taking 20mg of prilosec 3 times a day. I will keep you guys updated on how things are going. Merri
Happy Valentines Day!!!
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Kathryn:Mom&NICU Nurse
- Feb 16, 2011 2:53 pm
(#123 Total: 171)
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Marina 28w, Emma 36w, Olivia 34w 2 days |
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Tegan's Mom I am so sorry for all that you are going through. I hope that sometime soon there are more anwsers and better treatments.
Thinking of you
Kathryn
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esgf
- Feb 18, 2011 1:44 am
(#124 Total: 171)
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Abigail's Mom (29 weeks, 3/21/05) |
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Merri- Thanks for the update. I hope the nissen re-do works.
Please let us know.
Momof Teagan- How is he doing?
Ellen
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tucker'smom
- Feb 27, 2011 8:54 pm
(#125 Total: 171)
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Mom to Tucker (27 weeker, 05/26/06) |
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Hi Merri and Teagan' mom:
Merri-I hope Buddy's re-do nissen works, I have heard of kids having to get that done twice. Good luck!
Teagan's mom: Does Teagan see a pulmonologist? That may sound silly, I assume you do. My son is almost 5 now, he had a trach for a long time due to tracheomalacia and broncho malacia, anyways, he still has a fair amount of it, but he doesn't sound at all like a smoker. That is why I am wondering if y'all see a specialist who could give you more insight.
Keep us posted,
Leigh
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Cristians mom
- Apr 23, 2011 2:37 am
(#126 Total: 171)
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I just found this page today and I just wanted to share with some of the mothers what a journey I have been on with baby cristian he was born 12/23/10 and since I brought him home from the hospital he had noisy breathing and non stop crying so doc dx him with colic after 1 month I no longer could Stand seeing him struggle to breeth video recorded him so the pediatrician would believe me she immediately sent us to ENT dx with laryngomalacia later to find out severe laryngomalacia with difficultly eating constant crying loss of oxygen sleep study done on march 14th after several hospital admissions he just had a Supraglottoplasty done last week no improvement now ear infection and terrible cough still contracts in his chest I'm almost at My braking point and scared to know what the next step will be
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stacyat
- Apr 23, 2011 7:14 am
(#127 Total: 171)
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Mom to Emilyn and Hailey (our 20 week angels) and Elim (our 38 week, full term miracle)! |
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Hello and welcome to Share. I am so sorry to hear of the problems that your little guy has been facing since he was born. I'm glad that you were persistent with your son's doctor and they found out what the issue is. I hope that the doctors are able to figure out a solution that keeps Christian out of the hospital for good. Keep us posted!
Stacy
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esgf
- Apr 25, 2011 12:41 am
(#128 Total: 171)
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Abigail's Mom (29 weeks, 3/21/05) |
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Hi and Welcome to Share. I am sorry that Christian is having such a tough time and it is so hard to watcch our children struggle. Are you going back to the doctor soon. Is he home from the hospital?
How are you doing? There are support people at the hospital that may be able to help you deal with everything and speak effectively with his physicians.
Take care,
Ellen
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Cristians mom
- Apr 25, 2011 2:05 pm
(#129 Total: 171)
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It has been 2 weeks today that cristian had his Supraglottoplasty and no improvement screams all day long unless eating or sleeping terrible cheat congestion and cough diarrhea since discharge chest retractions has anyone else had this procedure and if so what was the outcome I'm waiting on his ENT to call now hoping it's not another trip to children's hospital 
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7angels
- Apr 29, 2011 12:20 am
(#130 Total: 171)
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Hi everyone
Buddy finally had his ph probe done a few weeks ago. We finally got the results back this week. Even tho he has a nissen and on the max dose of prilosec he is still refluxing 30 times. This reflux is causing some respiratory issues due to tracheomalacia and laryngomalacia and asthma because he is aspirating the reflux. Pulm spoke to GI and they have agreed to do a bronchoscopy and endoscopy to get a better look on the inside to see what needs to be done to the nissen to stop the reflux. Dont know yet when the scopes will be done. Also he has moderate constipation so they wanted him to try myralax first. If that doesnt work then when they do the scopes they will admit him for a few days to do the go-lite cleanout. I will keep you guys updated. I hope everyone is doing well. Oh, welcome aboard Cristians mom.
Merri
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stacyat
- Apr 29, 2011 10:37 am
(#131 Total: 171)
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Mom to Emilyn and Hailey (our 20 week angels) and Elim (our 38 week, full term miracle)! |
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Cristians Mom: I'm so sorry to hear that there has been no improvement. Did his ENT get hold of you? How is he doing now? Is there a new plan?
Merri: I'm so sorry to hear that Buddy is still refluxing despite the Nissen. Keep us posted on what his doctors plan on doing to help him. I'm sure it is so frustrating.
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esgf
- Apr 29, 2011 1:14 pm
(#132 Total: 171)
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Abigail's Mom (29 weeks, 3/21/05) |
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Merri- I am sorry that buddy is still refluxing but glad they have a plan to look into it further. Sometimes they seem so slow to react.
Cristians mom- I hope that today is a good day. Did you hear from the ENT?
Take care,
Ellen
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mummyof3
- May 8, 2011 6:56 am
(#133 Total: 171)
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Tracheomalacia and flying
Hi I have a 14month old with Tracheomalacia and are looking at taking a holiday in a few months..does anyone know if it is safe for him to fly with this condition?
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7angels
- Jul 29, 2011 1:01 pm
(#134 Total: 171)
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Hi everyone,
Just wanted to give you guys an update on Buddy. He is definately having issues with reflux. Right now he has a loose stitch from inside that has formed an absess. They have put him on an antibiotic and will probably do a small proceedure under anesthesia to remove the stitch. All of his doctors are finally going to have a conference to decide what to do about the reflux problem. Hopefully we will have some answers to resolve this problem.
This week Buddy started kindergarden. He has grown up sooooooooo fast.
Hope all is well with everyone
Merri
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stacyat
- Jul 29, 2011 2:48 pm
(#135 Total: 171)
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Mom to Emilyn and Hailey (our 20 week angels) and Elim (our 38 week, full term miracle)! |
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I hope that the procedure goes smoothly and the doctors can figure out something to help him with the reflux! Keep us posted when you can!
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7angels
- Aug 25, 2011 5:08 pm
(#136 Total: 171)
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Hello Everyone
Welcome to this site Cristians mom.
Well, today Buddy has seen Speech/swallow theropist. They have finally referred him to a feeding team. Plus they want to do have a esaphagram and upper gi barrium swallow. He also saw ped surgery today. Due to an absess next to his g-tube they have treated him with antibiotics again. Soon they will have to do surgery to remove the undisolved stitch that is causing the absess. The head ped surgeon is still reluctant to redo the nissen however his co-workers and pulm still believe he is having reflux issues that is causing pulm issues. I could really scream about now because my son has suffered long enough!
Merri
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Jackie G
- Aug 26, 2011 1:52 am
(#137 Total: 171)
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Mom to a 25 weeker who is now 8 years old and a 38.5 weeker who is now 6 |
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Merri - I wish the solution was so much easier for you to find. Hopefully Buddy's team will all get on the same page soon and you'll make some progress!
-Jackie
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esgf
- Aug 26, 2011 12:08 pm
(#138 Total: 171)
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Abigail's Mom (29 weeks, 3/21/05) |
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Merri- Can they do all of these things at once? or will Buddy have to undergoo multiple procedures? I hope they can agree on a plan of action soon.
Take care,
Ellen
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Ally_Alex_Alivia's_mom
- Aug 30, 2011 12:26 am
(#139 Total: 171)
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Merri-
I know it is tough to get through and it seems never ending, but hang in there. Have faith that one day soon it will all be figured out.
Chris
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NathansMom13
- Aug 31, 2011 2:22 pm
(#140 Total: 171)
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Come to ShareUnion 2012: It's the BEST weekend ever!!! |
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Hi Merri, I hope the team is able to all get on the same page. There is nothing more frustrating than when 2 Doctors have 2 different plans.
Laura
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tucker'smom
- Sep 8, 2011 6:21 pm
(#141 Total: 171)
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Mom to Tucker (27 weeker, 05/26/06) |
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Hi Merri,
Do you have an update on Buddy? I am wondering how the doctors' conference worked out, I am hoping that they had some good answers for you all.
I hope if they decide to re-do his nissen that it works!
Hugs,
Leigh
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Mommyof3gbb
- Oct 29, 2011 2:44 am
(#142 Total: 171)
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My son Christian was just diagnosed with Tracial Malasia today ( 10/28) And although it has been confirmed by his ped. from just listening to him, I am still concerned. He is my 3rd baby and he is only 10 weeks. Can someone message me on here or my actual email and fill me in on what could happen. I posted on some mother pages on FB and 1 to many people told me to "google it" and I would be fine.. I'm not, I want actual first hand information.I want to know somethings that I should ask the ENT on Wednesday when we go. And then if there is anything that I should ask the Pulmiologist (Lung DR). Iam extremely nervous, scared, stress, all of the above!!! Someone give me some kinda information here!!! 
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