What do you think?
This could end up being a long post so please bare with me..Dylan had LTP surgery done nearly 2 years ago now..it went great & only reason trachy was left in was because of his grade 3 anterior larynx..Airway looked great for over a year then during an MLB last Aug Dylan needed lasering done as some signs of scarring had developed..we were told that he would need to be seen every 3 months to keep check on it & more lasering if needed..
Since then we were cancelled 5 times due to no bed available as Dylan needs isolation room..i must admit i left it go as i was pregnant & myself & Dylan had been sick for about 2 months & wanted to make sure he was well enough for theatre..(They didnt know this though)..
I finally contacted them in April as i was due mid may & wouldn't be travelling up for a month or so after as i was having a c-section..they slotted us in the following week near end April..after that MLB we were told airway was bad again back to a grade 4 stenosis & was lasered & dilated by ballooning..we couldn't believe it!!
I am now wondering did this happen because they left us go 8 months instead of 3 months..or would it had happened anyway?They said we would be back up in 2 months which turned out to be 3 months as Dylan was chesty a month ago..
My husband drove up early fri morn with Dylan for theatre that day as no bed was available till the afternoon after surgery..it was my first time not ever going as i had to stay home with baby & older brother..
They said that airway is now so bad that they want to see Dylan again next month for more balloming but its looking likely he will need more reconstruction done & will have to meet up with the surgeon in clinic to discuss this..
It looks as poor Dylan will need to get CTR surgery done..anyone have experience with this surgery & was it a success..How long is the surgery & what was the recovery like?I really cant help wondering that if we hadnt been left so long & been seen in Nov instead of April this may not have been required..
Im interested to see what you all might think..thanks in advance!!
What do you think?
Marie-mum to 3 boys
-Ben(May 05) Marc(May 11) & Dylan(Sept 07)-Tetralogy of Fallot(repair may 08),Trached due to severe subglottic stenosis(July 08),G-tube(oct 08),Nissens(Feb 09),First Stage LTR(Aug 09),CTR(Nov 11).
Last edited by mum2dylan : 07-17-2011 at 05:54 PM.
Reason: Typing error