What is this feeling?
Posted Jun 8, 2010 8:54am
Sometimes I feel like this is all an alternate reality. I don't know what this feeling is, but I'll be at peace when it's gone. We got the chance to meet Dr. Streubel yesterday. Try and follow me...this can get pretty confusing.
First things first...Dr. Streubel felt like he needs to confirm the degree of Kaden's diagnoses of the Laryngeal-Tracheal cleft (the hole is his airway), and confirm that he truly does have subglottic stenosis ( a narrowing of his airway caused by scar tissue...might I add that this is another new diagnosis that we were previously unaware of).
He said that it's of the utmost importance for Kaden to be completely healed from the first surgery before he can perform the repair which is surgery #2. He also said that a definitive diagnoses of subglottic stenosis can't be made without doing a procedure call "rigid bronchoscopy", where he will take rigid tools as opposed to a flexible camera to view and manipulate his airway. For a moment he lead us to believe that the cleft itself may not actually be there. However that was until he read that Kaden is aspirating his own saliva which is only possible with a cleft. So we had hope for about 30 seconds.
Anyway, he did say that he can do the rigid bronchoscopy during Kaden's first surgery on June 24th. He will then have the opportunity to :
A. Take a really good look at what we're dealing with.
B. Size Kaden with an endotracheal tube to measure the degree of probable stenosis.
C. Watch how he responds to anesthesia to better prepare him for the cleft repair.
D. Decide whether or not he will need to repair the probable stenosis in addition to the cleft because that is much more serious than the cleft alone.
These decisions are all very important because they will dictate Kaden's prognosis and recovery. For the cleft repair only, we are looking at a few days in the PICU. With the stenosis repair, he will have to attempt to completely reconstruct Kaden's airway by opening his neck. He wants to try and avoid a tracheostomy,(breathing tube) but knows this might be necessary and was very open with us about the seriousness of the different possible issues. If Kaden only needs the cleft repaired he will probably have his second surgery in the beginning of August and Dr. Streubel might be able to do it endoscopically (through his mouth rather than through an incision in his neck). If not, we are looking at another huge hurdle folks. If he finds that he truly does have stenosis of certain degree than we are looking at around 2 weeks recovery in the PICU and a much stronger probability of respiratory compromise.
Either way, we are bummed he can't have everything repaired at the same time, but have hope that Dr. Streubel will be better prepared for Kaden's second surgery after doing the rigid bronchoscopy during the hernia repair.
Kaden had another really rough night with his nurse and is now up to 2 1/2 LPM of O2. He is struggling with his heart and belly most likely from the compression of his left lung. Now it's just a waiting game until June 24th. That's all for now folks. Thanks for love, prayers, and support.
P.S. There is a small chance we may be moving, but since life has happened we don't have anyone to help us. Brian's brother used to be the one to help us. If there is anyone out there that can help with the move and handle my neurotic behaviors with organization and being extremely careful moving our things, we would be eternally grateful and will return the favor when you need a helping hand. ;) Love, Julie
First things first...Dr. Streubel felt like he needs to confirm the degree of Kaden's diagnoses of the Laryngeal-Tracheal cleft (the hole is his airway), and confirm that he truly does have subglottic stenosis ( a narrowing of his airway caused by scar tissue...might I add that this is another new diagnosis that we were previously unaware of).
He said that it's of the utmost importance for Kaden to be completely healed from the first surgery before he can perform the repair which is surgery #2. He also said that a definitive diagnoses of subglottic stenosis can't be made without doing a procedure call "rigid bronchoscopy", where he will take rigid tools as opposed to a flexible camera to view and manipulate his airway. For a moment he lead us to believe that the cleft itself may not actually be there. However that was until he read that Kaden is aspirating his own saliva which is only possible with a cleft. So we had hope for about 30 seconds.
Anyway, he did say that he can do the rigid bronchoscopy during Kaden's first surgery on June 24th. He will then have the opportunity to :
A. Take a really good look at what we're dealing with.
B. Size Kaden with an endotracheal tube to measure the degree of probable stenosis.
C. Watch how he responds to anesthesia to better prepare him for the cleft repair.
D. Decide whether or not he will need to repair the probable stenosis in addition to the cleft because that is much more serious than the cleft alone.
These decisions are all very important because they will dictate Kaden's prognosis and recovery. For the cleft repair only, we are looking at a few days in the PICU. With the stenosis repair, he will have to attempt to completely reconstruct Kaden's airway by opening his neck. He wants to try and avoid a tracheostomy,(breathing tube) but knows this might be necessary and was very open with us about the seriousness of the different possible issues. If Kaden only needs the cleft repaired he will probably have his second surgery in the beginning of August and Dr. Streubel might be able to do it endoscopically (through his mouth rather than through an incision in his neck). If not, we are looking at another huge hurdle folks. If he finds that he truly does have stenosis of certain degree than we are looking at around 2 weeks recovery in the PICU and a much stronger probability of respiratory compromise.
Either way, we are bummed he can't have everything repaired at the same time, but have hope that Dr. Streubel will be better prepared for Kaden's second surgery after doing the rigid bronchoscopy during the hernia repair.
Kaden had another really rough night with his nurse and is now up to 2 1/2 LPM of O2. He is struggling with his heart and belly most likely from the compression of his left lung. Now it's just a waiting game until June 24th. That's all for now folks. Thanks for love, prayers, and support.
P.S. There is a small chance we may be moving, but since life has happened we don't have anyone to help us. Brian's brother used to be the one to help us. If there is anyone out there that can help with the move and handle my neurotic behaviors with organization and being extremely careful moving our things, we would be eternally grateful and will return the favor when you need a helping hand. ;) Love, Julie
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