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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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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