egrady
08-27-2007, 07:02 AM
Sean was born 6.5 weeks premature and spent two weeks in the NICU. He had ups and downs and he had rds and was put on the ventilator, had a slight cases of sepsis, high levels of jaundice was under the lights for over 36 hours and had lots of feeding issues. During the first year of his life as with most preemies he was really sick and sick all of the time. He had colds, ear infections, a slight case of rsv and more.
He is significantly delayed in most things he is currently in early intervention for PT, OT and Speech. He was taking to the ER several times for wheezing. The first time he wheezed my husband and I totally freaked out we went to the ER and they did several treatments and told us they think it is asthma. No one in our families had asthma they sent us hope with a nebulizer and an inhaler. They worked for the first week and than it stopped working and he was wheezing again really bad. The pedi than treated him with oral predazone (not sure how to spell it) and that was treatment after treatment and it still was not working.
We than went to an ENT at Alexian Brothers Medical Center and they put a tube (a Tran nasal Flexible Laryngoscopy (TFL) his nose to look at everything inside and said that he has tracheomalicia and that there is nothing else we can do and to let him out grow it.
Well a few months went by with no wheezing and than bam he has several episodes of wheezing and the pedi kept telling me not to worry and gave us more steroids. Sean does not do well on these steroids it makes him very antsy and upset.
We switched pedi’s and were referred to an ENT at Northwest Community hospital. After 12 ear infections the doc said he needed tubes because of all of the fluid in his ears. But there was some test we needed to perform before he could do the surgery. The first was a hearing test and the second an xray. The doc said to not worry about the x-ray only 2% come back with something but we need to make sure everything looks okay.
The hearing test showed that his best ear is hearing at 35% but the tubes should help significantly. So than we were off for the x-rays.
They did the x-rays of his neck on 7/31 and I was called on 8/2 saying that we need to go for another set of x-rays they thought they found something. So we went to another hospital for some more neck x-rays on the evening of 8/2. On 8/3 the ENT called me and told me that they definitely saw some narrowing of his windpipe and think that it is subglottic stenosis and that we need to go for one more x-ray at another hospital. On Saturday 8/4 we went to another hospital for the third set of x-rays and at this point Sean was unbearable. Within an hour of the x-rays the ENT called me and said that the surgery is off, that this radiologist also suspects subglottic stenosis and that he has narrowing in his windpipe and in his chest and told us that we will need to go to a Pedi ENT at Loyola.
We got into Loyola thanks to all of our docs that following week and the doc explained that there is not much he can tell us until he goes in and looks at everything. I am so scared and nervous I feel it is my fault he has to go through all of this stuff since I couldn't care him to term. I really don't understand about his wind pipe but the told me can be life threatening and they are more worried about his wind pipe than his ears now....and it is really freaking me out.
Sean’s surgery is scheduled for Thursday September 6th, at Loyola Hospital. He is sick right now has ear infection # 13 and is wheezing and the last two weeks of August the doc is on vacation. I don’t know what time yet, it will be the first thing in the morning. I will keep you posted as I hear anything.
He will be having the following done:
Direct Rigid Laryngoscopy
Rigid Bronchoscopy
Bilateral Myringotomy & Tube Insertion
The doc said if he does see something while he is in, he will not do anything at that time unless there is a cyst or polyp. It would be done at a different time after we talked about everything.
Has anyone gone thru all of this, what can I expect, how will Sean be? Did you child have to spend the night in the hospital? They told me to bring a bag.
Thanks for all of your help and I look foward to getting to know all of you,
Erin
He is significantly delayed in most things he is currently in early intervention for PT, OT and Speech. He was taking to the ER several times for wheezing. The first time he wheezed my husband and I totally freaked out we went to the ER and they did several treatments and told us they think it is asthma. No one in our families had asthma they sent us hope with a nebulizer and an inhaler. They worked for the first week and than it stopped working and he was wheezing again really bad. The pedi than treated him with oral predazone (not sure how to spell it) and that was treatment after treatment and it still was not working.
We than went to an ENT at Alexian Brothers Medical Center and they put a tube (a Tran nasal Flexible Laryngoscopy (TFL) his nose to look at everything inside and said that he has tracheomalicia and that there is nothing else we can do and to let him out grow it.
Well a few months went by with no wheezing and than bam he has several episodes of wheezing and the pedi kept telling me not to worry and gave us more steroids. Sean does not do well on these steroids it makes him very antsy and upset.
We switched pedi’s and were referred to an ENT at Northwest Community hospital. After 12 ear infections the doc said he needed tubes because of all of the fluid in his ears. But there was some test we needed to perform before he could do the surgery. The first was a hearing test and the second an xray. The doc said to not worry about the x-ray only 2% come back with something but we need to make sure everything looks okay.
The hearing test showed that his best ear is hearing at 35% but the tubes should help significantly. So than we were off for the x-rays.
They did the x-rays of his neck on 7/31 and I was called on 8/2 saying that we need to go for another set of x-rays they thought they found something. So we went to another hospital for some more neck x-rays on the evening of 8/2. On 8/3 the ENT called me and told me that they definitely saw some narrowing of his windpipe and think that it is subglottic stenosis and that we need to go for one more x-ray at another hospital. On Saturday 8/4 we went to another hospital for the third set of x-rays and at this point Sean was unbearable. Within an hour of the x-rays the ENT called me and said that the surgery is off, that this radiologist also suspects subglottic stenosis and that he has narrowing in his windpipe and in his chest and told us that we will need to go to a Pedi ENT at Loyola.
We got into Loyola thanks to all of our docs that following week and the doc explained that there is not much he can tell us until he goes in and looks at everything. I am so scared and nervous I feel it is my fault he has to go through all of this stuff since I couldn't care him to term. I really don't understand about his wind pipe but the told me can be life threatening and they are more worried about his wind pipe than his ears now....and it is really freaking me out.
Sean’s surgery is scheduled for Thursday September 6th, at Loyola Hospital. He is sick right now has ear infection # 13 and is wheezing and the last two weeks of August the doc is on vacation. I don’t know what time yet, it will be the first thing in the morning. I will keep you posted as I hear anything.
He will be having the following done:
Direct Rigid Laryngoscopy
Rigid Bronchoscopy
Bilateral Myringotomy & Tube Insertion
The doc said if he does see something while he is in, he will not do anything at that time unless there is a cyst or polyp. It would be done at a different time after we talked about everything.
Has anyone gone thru all of this, what can I expect, how will Sean be? Did you child have to spend the night in the hospital? They told me to bring a bag.
Thanks for all of your help and I look foward to getting to know all of you,
Erin