Yesterday, we had rigid broncoscopy done for Vignesh to assess his airway.
This would help to have a clearer picture than flexible bronchoscopy. But, unlike the flexible one, this is more complicated I guess. This has to be done in Operation Theater under anesthesia.
This was the plan. The doctor would examine the airway passage and if the swelling had subsided, he would decannulate Vignesh else tracheostomy would stay. Since he had already started breathing through his nose, we were hopeful. Although, from our earlier experiences we had learnt never to look forward, I still could not keeping from expecting the good news.
It was more than an hour's wait. We were called in. As an answer to our hopeful glance, the first thing the doctor said was 'I haven't decannulated yet'. When I heard the word 'yet' I knew he had some good news for us.
Here is the good news. He said the passage has certainly widened and the bronchoscope was able to pass quite freely through the passage. However, the procedure was by itself intrusive and could have caused a mild swelling which would subside in a week or two. So, if we want we can go for decannulation after 2 weeks.
But, the bad news is that the passage is not as wide as it is expected to be. It means that if he gets severe chest congestion, the passage might not be able to handle it. As a result, he might have to be intubated or tracheostomy might have to be opened again. There is also a fair chance that it might not happen. So, it was our call.
I immediately thought no way! I'm not going to take this risk which might make Vignesh go through all this again. In which case the doctor feels Vignesh might have to wait for a year or two. So that when he grows, the passage would widen too.
And, another news that bothers me is that during the procedure the doctor could not see the vocal cords moving apart. They were certainly twitching but did not move apart. He wasn't sure if this was due to anesthesia or if the nerves to the vocal cord was affected in someway. I just hope it was due to anesthesia. Also, I can hear a little sound coming from him now and then. So, I really really hope that his vocal cords are fine.
Since, decan is not going to happen anytime soon, I need to start shopping for PMV. I don't have any idea about it. Even the ENT said that he doesn't have any experience with PMV for small kids. We were able to get in touch with a dealer in Delhi, a place that is more than a thousand miles from my city. So, we need to get all the information from him through phone or email. But, we don't know where to start. I'm looking forward to get guidance from my dear friend Lisa as well as the trach forum to gather all necessary details that I need to know before buying a PMV.
So, after the procedure yesterday, Vignesh was all tired and fussy. I think he was scared. He kept crying a lot. He was also sleeping so much that I began to fear if the anesthesia had been given in excess. But the moment we got into the cab and the cab started, he was wide awake and enjoying the bright traffic, cool breeze and the ride back home.
I am keeping Vignesh in my prayers that all is well and that the passage does widen to prevent further surgery. I can't imagine how difficult this is for you all!
ReplyDeleteI have to say that Vignesh is so beautiful -- his eyes are gorgeous! So expressive! ♥♥♥
Sumithra,
ReplyDeleteI think you made a very wise decision, I am very proud of you.
We went to speech therapy and they placed it over Gage's trach, he was frightened at first but when he cried I'll tell you it was one of the most beautiful sounds. This was the first time I had heard him since birth.
We would keep it on him as long as he could tolerate it.....now he can tolerate it all day!
I would ask your hospital to set you up with an appointment with a speech therapist (I am hoping they will be informed with helping you out in this area and giving Vignesh some exercises with it on.) they should also be able to guide you on where to get one, if not ordering one in for you.
I am quite confident that the chords were due to the fact of the anesthesia.
Hugs Sumithra,
Lisa
oops I meant cords, sorry.
ReplyDeleteMay I also add Vignesh that you are getting more handsome each time Mommy posts a pic.
One day I will photograph you Vignesh, and I can't wait to finally meet you.
You are a brave boy and a champion.
Hugs,
Lisa
Hi Sumithra, This is Joyce. I personally think you made a wise, although hard, decision today. The doctors did a flexible scope on Sarah about this same age with about the same report. I can share that everytime the weather changed or she got a little nasal cold her airway would swell. Had we made the decision to decannulate on that first scope I know we would have had to re-trach. I believe waiting another year or so will be well worth it. It will just give the airway a little more time to grow and the scarring to heal.
ReplyDeleteHe seems to be doing so well otherwise and growing so handsome.
oh that is marvelous !!!
ReplyDeleteJust one more year then