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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stacyat
- Oct 29, 2011 1:30 pm
(#143 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'm so sorry to hear of your little guy's diagnosis. I don't have any personal experience, but I'll see if I can find another mom or two who does. Big hugs, I'm so sorry that you weren't finding support you had hoped for in those other places.
Stacy
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NathansMom13
- Oct 30, 2011 6:01 pm
(#144 Total: 171)
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Come to ShareUnion 2012: It's the BEST weekend ever!!! |
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Hi and welcome to Share. I believe most kids grow out of their tracheomalacia in a few years. Here are my suggestions for questions to ask the ENT:
1. Do any further studies need to be done to confirm the diagnosis (such as a bronchoscopy or a laryngoscopy)
2. Will he outgrow it
3. Will there be any other effects on his overall health, like will this make him more prone to illness such as colds?
4. Will his cough sound normal? I know this is a weird question to ask but some kids sound like they have croup when they cough when they simply have tracheomalacia
My son also has trachoemalacia as a result of a birth defect. Those are all the questions I can think of for now. My advice is to write down everything, even go in with questions written down and then write down the answers. It will help you to remember what the Dr says. Feel free to ask as many questions as you need to feel comfortable with this diagnosis.
Laura
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tucker'smom
- Oct 31, 2011 6:25 pm
(#145 Total: 171)
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Mom to Tucker (27 weeker, 05/26/06) |
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Hello and welcome to Share. Laura gave you a great list of questions to ask the ENT. I agree with her, most kids with tracheomalacia grow out of it in a few years, and most cases are very mild and don't really affect the child. So I am not sure if that is the case with your son.
I also agree to write your questions down, and then bring the list in with you to the appointment and write down the answers. Then let us know what you find out, and if we can help you anymore.
Good luck!
Leigh
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esgf
- Nov 2, 2011 2:55 pm
(#146 Total: 171)
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Abigail's Mom (29 weeks, 3/21/05) |
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Good luck today. I hope the doctor's appt goes well. Writing down the answers also helps. I know I get selective memory (good and bad) during these appts. My child had bronchomalacia and we just found out that she has out grown it so hopefully your son will do so soon.
Ellen
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7angels
- Feb 15, 2012 4:51 pm
(#147 Total: 171)
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Hello Everyone,
It has been a very long time since i posted. Since i dont have a computer at home i cant get on here very often. Things with Buddy are still complicated. The doctors keep running tests but never really do anything. One dr said he is not refluxing and aspirating but right before christmas he was sick with an aspirated pnemonia. Go figure. He also has had 4 absesses beside his gtube. They have now decided to do exploritory surgery to find out why. They might have to relocate his gtube. Also after 2 years they have finally hooked him up with a feeding specialist team. Oh and when they did the last bronchoscopy a month ago they suddenly discovered he does have a vascular compression on the trachia. Shouldnt this have been noted 5 years ago.
Merri
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tucker'smom
- Feb 15, 2012 5:17 pm
(#148 Total: 171)
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Mom to Tucker (27 weeker, 05/26/06) |
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Hi Merri,
I'm sorry that you can't get online more often, I have been wondering how Buddy is doing. So sorry that he aspirated and had pneumonia, that's awful  Good luck with the feeding specialist team, I hope that together you all can discover if he is refluxing, and get that fixed if needed. I am not sure what a vascular compression is, is it possible that it can develop over time? There are some things about Tucker that they've tested for before and didn't find, only to find at later tests. I know it is frustrating. Good luck, keep us updated as you can,
Leigh
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esgf
- Feb 20, 2012 1:19 pm
(#149 Total: 171)
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Abigail's Mom (29 weeks, 3/21/05) |
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Hi Merri
It sounds like Buddy's health just keeps evolving. I am sorry it is becoming more frustrating. I hope the feeding team can help you and the doctors find some solutions.
What would the effects of vacular compression be? I am sorry I don't know. Please keep us updated when you can. Know that we are thinking of you and Buddy.
Ellen
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7angels
- Mar 13, 2012 8:09 pm
(#150 Total: 171)
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Tuckers Mom: A vascular compression is where an artery is being compressed by the trachea. Due to this he has had chest pains due to his heartrate going up to 164 bpm cause the artery is being compressed and the heart has to work harder. Since these spells arent very frequent they just watch and see how he does overtime. Maybe later he will have to have surgery to fix it. This thursday he will be having a specialized modified barium swallow. They want to see how food not liquids get stuck in his esaphagus. He cant get his gtube removed until they can fix this problem. Its good to hear from you guys Merri 
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7angels
- Apr 4, 2012 10:10 pm
(#151 Total: 171)
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well buddy is having a tough time. he is sick with fever as high as 105.4 and has a nasty cough. they think it might be whooping cough. we sould get the results back tomorrow
merri
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stacyat
- Apr 4, 2012 10:32 pm
(#152 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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Oh poor baby, I hope that they figure out what is going on soon so he can get on the road to recovery. Many hugs and prayers coming your way!
Stacy
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liz loschinskey
- Apr 5, 2012 12:47 pm
(#153 Total: 171)
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Merri, holy! That's a high fever. I think I'd be in the ER with my kid at that point.
Ugh, I'll be praying for you guys.
Keep us updated!
Liz
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tucker'smom
- Apr 5, 2012 5:26 pm
(#154 Total: 171)
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Mom to Tucker (27 weeker, 05/26/06) |
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Hi Merri,
Good luck, I can't imagine having a 104.5 fever! I hope the doctors can help you out ASAP.
Leigh
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esgf
- Apr 6, 2012 12:35 pm
(#155 Total: 171)
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Abigail's Mom (29 weeks, 3/21/05) |
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Merri,
I hope Buddy is doing better. Did they find the source of the fever?
Good luck and I hope the doctors figured it out.
Ellen
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7angels
- Apr 16, 2012 8:45 am
(#156 Total: 171)
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Everyone: Well the good news is it wasnt whooping cough. They never did find the source of the fever. he had to have breathing treatments every 4 hours and prednesilone for 5 days. He seems to be doing much better tho. still has nasty cough.
Liz: I did take him to the er on tuesday then to the dr office on wednesday. The er dr thought it was pnemonia but xray was neg.
Everyone: oh and when we got home from the dr wed evening my 3 yr old boy was running down the driveway tripped fell and knocked out 2 front teeth. So we went back to the er.
Everyone: we just recently found out that my granddaughter has laryngomalacia. She had been wheezing since birth and her dr said it was nothing it happens sometimes. since i have had so much to deal with with buddy i demanded a referral to pulm. they did the bronchoscopy and discovered laryngomalacia. She is also developmently delayed due to not being able to lay on her tummy cause that makes her wheezing to bad. she is now 8 months old and still cannot roll over. however she can finally sit up by herself. oh and by the way i get the fun job of raising her since her mother, my daughter, decided that raising a kid was too hard so she moved out and left the baby behind. sad situation but true.
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esgf
- Apr 16, 2012 12:35 pm
(#157 Total: 171)
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Abigail's Mom (29 weeks, 3/21/05) |
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Merri- I am so sorry about the teeth. The mouth injuries are so bloody and upsetting to everyone. I hope he feels better.
Also, I am sorry your daughter left her daughter behind. I hope that now that they have found the cause of the wheezing she will be able to "catch up " a bit. Will she be able to get therapy?
Take care,
Ellen
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7angels
- Apr 16, 2012 5:21 pm
(#158 Total: 171)
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Ellen: They have already begun therapy, 2 weeks now. My son that knocked his teeth out saw the dentist today to be fitted for a partial only to find out that two more teeth on the top that were damaged have to be extracted tomorrow and the four on the bottom are loose. if they dont tighten up then they might extract those to. when we left the dentist office my car got rearended!
To make things even more crazier my oldest son was admitted last night due to bike wreck. he has severe concusion and multiple abrasions and 12 stitches. looks like he can go home today.
Im ready to put my family in a padded bubble!!!!!
Buddy has had a 30 day trial of not using his gtube. however he has lost 4 pounds so it doesnt look like we will get rid of that anytime soon.
Merri
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7angels
- Jun 5, 2012 6:10 pm
(#159 Total: 171)
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Buddy had to see ped surgery today. They have finally decided to do exploritory surgery to see why he keeps getting infections around the gtube. Worse case they will have to relocate the gtube. The 30 day trial off tubefeeds was not a success so we will have to continue feeds. He has had the gtube for 2 1/2 years now. they said he would probably only use it for 6=8 weeks. So much for that. I will keep you guys updated.
Merri
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stacyat
- Jun 5, 2012 8:08 pm
(#160 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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Ugh, I'm sorry he's having to go back for some more surgery! I hope they're able to figure out what is going on and that it's a simple fix! Hugs, keep us posted when you can!
Stacy
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tucker'smom
- Jun 13, 2012 10:56 pm
(#161 Total: 171)
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Mom to Tucker (27 weeker, 05/26/06) |
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Merri, I'm sorry that y'all are going back for more surgery! Also, sorry about the g-tube trial not going well I know how that feels, my son has had his g-tube for almost 6 years now, and he is finally down to about 20% tube feeding. Let us know how it goes! Leigh
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7angels
- Jul 19, 2012 9:46 pm
(#162 Total: 171)
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it turns out to be nothing major that was causing the abcess around buddys gtupe. there was a fistula that was caused by an injury to the site over a year ago and bacteria was trapped. they opened the area drained it cleaned it and now it is healed and looks sooooo much better.
Merri
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Jackie G
- Jul 20, 2012 1:34 am
(#163 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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That's great to hear, Merri!
-Jackie
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stacyat
- Jul 20, 2012 2:07 am
(#164 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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Wow! So glad that it was just a simple fix and it's looking great now!!
Stacy
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NathansMom13
- Jul 21, 2012 1:09 am
(#165 Total: 171)
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Come to ShareUnion 2012: It's the BEST weekend ever!!! |
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