Vascular Rings/Subglottic edema

[Guest guest]

I could really use some help here. I am intrigued about these vascular rings but doubting that this is what Tyler has. Tyler was supposed to have surgery yesterday with four different doctors (ENT, Plastic surgery, Pulmonology, and a pediatric dentist). Needless to say it did not happen. The pediatric anesthesiologist (whom I adore) would not attempt to intubate him for fear of losing his airway and him ending up in deep sh__. The ENT, Pulmonologist, and Plastic Surgeon (all pediatric) were present for the nasal endoscopy, laryngoscopy, and bronchoscopy. He does not have any choanal stenosis (had atresia at birth and has been enlarged two times after that) BUT the subglottic area is extremely swollen and red. I ended up getting a picture and I am not exaggerating--it looks completely closed. The doctors could not believe that he is not stridorous or symptomatic (he truly is my miracle boy). Thank God he is on nasal CPAP at night. ANYWAY, before we left the hospital yesterday, they did an Upper GI to see if he is refluxing (he's had two Nissen Fundoplications as a baby) because this is the only medical thing they thought could be causing the swelling and irritation. The UGI did not show any reflux but showed him having a difficult time swallowing (duh). I talked to the Pulmonologist later and today we are going back to the hospital for a rehab swallow study and if that is inconclusive (in his opinion) then Tyler will be admitted for a pH probe tonight. I cannot believe this little boy is breathing at all.

We ended up having more questions than answers. Tyler had his second pharyngoplasty at Riley (in Indy) in September and I would have thought that if he had been swollen then, the ENT would have told me. I am waiting for a call from them this AM. If it is not reflux then the doctors mentioned a laryno-tracheoplasty (which they said is a major surgery that is not commonly done anywhere in the country--they said Riley probably does one case every other month). Has anyone ever encountered this? I am just blown away. I was trying to get this stuff done before the next baby comes (in mid March). What a mess!

Thanks for any/all input:o)

Kristy, mom to Tyler--CHARGE (7yrs) and (23 mos)

[Guest guest]

Kristy,

That all is amazing. I hope things work out very soon. I was

wondering what the procedure is supposed to do? It sounds like the

procedure that was once suggested to us where there is an opening in the

neck so food can drain out that way? This was suggested to us by a

neurologist who thought Kendra might never be able to eat safely and it

would give her a way to eat and not have food go down her throat.

Is that what the 'laryno-tracheoplasty' procedure is about? Luckily

it turned out that a couple of years later Kendra developed a safe

swallow after therapy so we never actually had to contemplate the

procedure.

It is amazing that Tyler is able to breathe with such a swelling and

stenosis. I hope you get some answers soon. Also, what is a

pharyngoplasty?

Mom to Kendra, and Camille

I could really use

some help here. I am intrigued about these vascular rings but

doubting that this is what Tyler has. Tyler was supposed to have

surgery yesterday with four different doctors (ENT, Plastic surgery,

Pulmonology, and a pediatric dentist). Needless to say it did not

happen. The pediatric anesthesiologist (whom I adore) would not

attempt to intubate him for fear of losing his airway and him ending up

in deep sh__. The ENT, Pulmonologist, and Plastic Surgeon (all

pediatric) were present for the nasal endoscopy, laryngoscopy, and

bronchoscopy. He does not have any choanal stenosis (had atresia at

birth and has been enlarged two times after that) BUT the subglottic area

is extremely swollen and red. I ended up getting a picture and I am

not exaggerating--it looks completely closed. The doctors could not

believe that he is not stridorous or symptomatic (he truly is my miracle

boy). Thank God he is on nasal CPAP at night. ANYWAY, before

we left the hospital yesterday, they did an Upper GI to see if he is

refluxing (he's had two Nissen Fundoplications as a baby) because this is

the only medical thing they thought could be causing the swelling and

irritation. The UGI did not show any reflux but showed him having a

difficult time swallowing (duh). I talked to the Pulmonologist

later and today we are going back to the hospital for a rehab swallow

study and if that is inconclusive (in his opinion) then Tyler will be

admitted for a pH probe tonight. I cannot believe this little boy

is breathing at all.

We ended up having more questions than answers. Tyler

had his second pharyngoplasty at Riley (in Indy) in September and I would

have thought that if he had been swollen then, the ENT would have told

me. I am waiting for a call from them this AM. If it is not

reflux then the doctors mentioned a laryno-tracheoplasty (which they said

is a major surgery that is not commonly done anywhere in the

country--they said Riley probably does one case every other month).

Has anyone ever encountered this? I am just blown away. I was

trying to get this stuff done before the next baby comes (in mid

March). What a mess!

Thanks for any/all input:o)

Kristy, mom to Tyler--CHARGE (7yrs) and (23

mos)

[Guest guest]

,

That would be soooooooooooooooooooo nice. Even Tues.- Wed. we had a 24 hour pH probe study and he had bradycardia that night. I saw a heart rate of 44! Why?!?!? This is not his norm and once again, the doctors are not real concerned. We will be getting another echo and ECG done ASAP for mom's sake:o)

Kristy

Vascular Rings/Subglottic edema

I could really use some help here. I am intrigued about these vascular rings but doubting that this is what Tyler has. Tyler was supposed to have surgery yesterday with four different doctors (ENT, Plastic surgery, Pulmonology, and a pediatric dentist). Needless to say it did not happen. The pediatric anesthesiologist (whom I adore) would not attempt to intubate him for fear of losing his airway and him ending up in deep sh__. The ENT, Pulmonologist, and Plastic Surgeon (all pediatric) were present for the nasal endoscopy, laryngoscopy, and bronchoscopy. He does not have any choanal stenosis (had atresia at birth and has been enlarged two times after that) BUT the subglottic area is extremely swollen and red. I ended up getting a picture and I am not exaggerating--it looks completely closed. The doctors could not believe that he is not stridorous or symptomatic (he truly is my miracle boy). Thank God he is on nasal CPAP at night. ANYWAY, before we left the hospital yesterday, they did an Upper GI to see if he is refluxing (he's had two Nissen Fundoplications as a baby) because this is the only medical thing they thought could be causing the swelling and irritation. The UGI did not show any reflux but showed him having a difficult time swallowing (duh). I talked to the Pulmonologist later and today we are going back to the hospital for a rehab swallow study and if that is inconclusive (in his opinion) then Tyler will be admitted for a pH probe tonight. I cannot believe this little boy is breathing at all.

We ended up having more questions than answers. Tyler had his second pharyngoplasty at Riley (in Indy) in September and I would have thought that if he had been swollen then, the ENT would have told me. I am waiting for a call from them this AM. If it is not reflux then the doctors mentioned a laryno-tracheoplasty (which they said is a major surgery that is not commonly done anywhere in the country--they said Riley probably does one case every other month). Has anyone ever encountered this? I am just blown away. I was trying to get this stuff done before the next baby comes (in mid March). What a mess!

Thanks for any/all input:o)

Kristy, mom to Tyler--CHARGE (7yrs) and (23 mos)

"5th International CHARGE Syndrome Conference, Indianapolis, Indiana, July20-22, 2001. Information will be available first in CHARGE Accounts, theCHARGE Syndrome Foundation's newsletter."For information about the CHARGE Syndrome Foundation or to become a member (and get the newsletter)please contact marion@... or visit the CHARGE Syndrome Foundation web page at http://www.chargesyndrome.org "5th International CHARGE Syndrome Conference, Indianapolis, Indiana, July20-22, 2001. Information will be available first in CHARGE Accounts, theCHARGE Syndrome Foundation's newsletter."For information about the CHARGE Syndrome Foundation or to become a member (and get the newsletter)please contact marion@... or visit the CHARGE Syndrome Foundation web page at http://www.chargesyndrome.org

[Guest guest]

Hi Kristy,

I just read this email. Our daughter had a grand mal seizure during her sleep last November and has had several others since. After this first seizure she too had a low heart rate at night, into the 40's. We had an alarm system at that time and it kept going off. When it was returned to the docs they too did not seem concerned even though this was not in her normal. After a period of time it did come back up and we regularly check it and it's now higher, back where it was. Haven't seen any problems since. But I keep asking Why? and what caused it to be so low? I know our daughters seizures part is different, but I was also wondering about the low heart rate during sleep. I'm not sure what the test is that you had done, a PH probe? If you get any answers I would love if you could share them. I hope everything is sorted out for you.

Pat, , (13), (9-CHARGE) Rittgasser Keswick, Ontario, Canada

-----Original Message-----From: Kristy Stemen Sent: Thursday, February 15, 2001 11:27 AMTo: CHARGE Subject: Re: Vascular Rings/Subglottic edema

,

That would be soooooooooooooooooooo nice. Even Tues.- Wed. we had a 24 hour pH probe study and he had bradycardia that night. I saw a heart rate of 44! Why?!?!? This is not his norm and once again, the doctors are not real concerned. We will be getting another echo and ECG done ASAP for mom's sake:o)

Kristy

Vascular Rings/Subglottic edema

I could really use some help here. I am intrigued about these vascular rings but doubting that this is what Tyler has. Tyler was supposed to have surgery yesterday with four different doctors (ENT, Plastic surgery, Pulmonology, and a pediatric dentist). Needless to say it did not happen. The pediatric anesthesiologist (whom I adore) would not attempt to intubate him for fear of losing his airway and him ending up in deep sh__. The ENT, Pulmonologist, and Plastic Surgeon (all pediatric) were present for the nasal endoscopy, laryngoscopy, and bronchoscopy. He does not have any choanal stenosis (had atresia at birth and has been enlarged two times after that) BUT the subglottic area is extremely swollen and red. I ended up getting a picture and I am not exaggerating--it looks completely closed. The doctors could not believe that he is not stridorous or symptomatic (he truly is my miracle boy). Thank God he is on nasal CPAP at night. ANYWAY, before we left the hospital yesterday, they did an Upper GI to see if he is refluxing (he's had two Nissen Fundoplications as a baby) because this is the only medical thing they thought could be causing the swelling and irritation. The UGI did not show any reflux but showed him having a difficult time swallowing (duh). I talked to the Pulmonologist later and today we are going back to the hospital for a rehab swallow study and if that is inconclusive (in his opinion) then Tyler will be admitted for a pH probe tonight. I cannot believe this little boy is breathing at all.

We ended up having more questions than answers. Tyler had his second pharyngoplasty at Riley (in Indy) in September and I would have thought that if he had been swollen then, the ENT would have told me. I am waiting for a call from them this AM. If it is not reflux then the doctors mentioned a laryno-tracheoplasty (which they said is a major surgery that is not commonly done anywhere in the country--they said Riley probably does one case every other month). Has anyone ever encountered this? I am just blown away. I was trying to get this stuff done before the next baby comes (in mid March). What a mess!

Thanks for any/all input:o)

Kristy, mom to Tyler--CHARGE (7yrs) and (23 mos)

"5th International CHARGE Syndrome Conference, Indianapolis, Indiana, July20-22, 2001. Information will be available first in CHARGE Accounts, theCHARGE Syndrome Foundation's newsletter."For information about the CHARGE Syndrome Foundation or to become a member (and get the newsletter)please contact marion@... or visit the CHARGE Syndrome Foundation web page at http://www.chargesyndrome.org "5th International CHARGE Syndrome Conference, Indianapolis, Indiana, July20-22, 2001. Information will be available first in CHARGE Accounts, theCHARGE Syndrome Foundation's newsletter."For information about the CHARGE Syndrome Foundation or to become a member (and get the newsletter)please contact marion@... or visit the CHARGE Syndrome Foundation web page at http://www.chargesyndrome.org "5th International CHARGE Syndrome Conference, Indianapolis, Indiana, July20-22, 2001. Information will be available first in CHARGE Accounts, theCHARGE Syndrome Foundation's newsletter."For information about the CHARGE Syndrome Foundation or to become a member (and get the newsletter)please contact marion@... or visit the CHARGE Syndrome Foundation web page at http://www.chargesyndrome.org