Wednesday, January 27, 2010

Cause for my concern

(Continued from previous post)

At first, my husband and I were just thinking about the result of the bronchoscopy. Only later we realized that we weren't been informed of the actual procedure that took place. The doctor had said that his airway had healed but he did not tell us why they did not try decannulation.

When we first went to meet him in the outpatient ward he wasn't available. So, we finished the discharge procedures and went to the OP ward to meet him. There were a lot of patients and it was a really long wait. Vignesh has grown up a lot and it is really difficult to manage him when we are out. The more active and playful he is, the more suctioning he needs. At first, it was difficult to find a private place for suctioning and we were forced to do it in corridor. And, finally we met the doctor.

With so many patients waiting outside, we had time to speak to him for just a couple of minutes and this is what we learnt. They had inserted the broncoscope a little below the vocal chords. Things looked fine. They did not want to go further as it might irritate and cause swelling again. So, they just removed the tracheostomy tube but he was desaturating and so they put the tube back in. The entire procedure was carried out in about 15 minutes or lesser.

This just leaves us with a lot of questions. My son has been on trach for nearly a year now. So, removing the tube and expecting him to breathe on his own all of us sudden, looks unreasonable to me. From what I read on the tracheostomy forum, I understand that decan isn't handled as abruptly as this one. The doctors follow a series of steps before going for trial decannulation. First they try to downsize the tracheostomy tube and then they cap it for a few hours. Only later do they try removing the tube. And, this seems like the systematic and the best way to do it.

We are just worried that if we are to repeat my son's trial decannulation after 6 months, the same abrupt procedure might be followed. And, this might just keep continuing in a loop. I just feel like we are struck and I'm trying to find way to get out of this situation. We were told that there were just a couple of doctors who deal with pediatric tracheostomy in India. And, this was the only doctor to whom we were referred to. We don't know about any other doctor who deals with tracheostomy.

So, this is what I'm planning to do. It might sound too superficial. But, we are really running out out of options and the necessity is just forcing me to come up with all these crazy ideas. I'm just hoping this would work. So, this is the plan. I'm going to discuss with people in the trach forum to find what are the various procedures that are been followed in trial decan. I'm not sure how the system works abroad. But, I would anyway ask my aunt if she could get in touch with a ENT in this field and who could give us idea about trial decan.(She had helped me in getting assistance from a pediatric cardiologist to read my son's echo when they first did an incomplete diagnosis for my son here).

And with all these papers, I 'm planning to set up an appointment with the head of the PICU at the hospital in Chennai where we usually take Vignesh to. Her team is fully aware of Vignesh's medical history and her team takes special care when it comes to my son. We would discuss if the her team and the ENT at the hospital could try decan in the right way. As a matter of fact, this is the team that handled Vignesh's tracheostomy surgery last year. And, the ENT here has expertise with tracheostomy and short term decannulations. And, he also has complete knowledge of Vignesh's medical history.

I know all this sound too far fetched. There are hospital rules, doctor's egos and a whole other factors that are involved in getting this done. But, I'm just keeping my hopes up. We need loads of luck and prayers. Please keep us in your prayers.


  1. I don't think that anyone would begrudge you advocating for the best procedure and team to help Vignesh. I say GO FOR IT! *hugs*

  2. Sumithra I am curious as to what kind of bronch was done...Did they use the flexiscope or did they take the trach completely out and take pictures without the trach?

    What was his airway doing?

    Usually in such a relaxed state that can give them a better indication of the airway and how it is fuctioning.

    I just wanted to tell you we were told 1-2 years with Gage's trach and we are now on year 3 with a glimmer of hope in 2011 which would put us on year 5. I strongly believe the longer it is in the better Sumithra, what a let down it would be if he did finally get decannulated then there was trouble down the road and then got re-trached.

    I love you Sumithra and I certainly wish I lived closer as I know how depressing and how much of a let down it is when decannulation is denied.

    If you have any questions please don't hesitate to private email me, I am forever and always here for you and your family.

    Also do not hesitate to ask the doctors one million questions, right down any question you can think of, make a list and present it to them at your next meeting.

    I love you and one day at a time, right?
    All the love in the universe from me to you!

  3. You probably feel so frustrated with the entire system, I would nevertheless talk to your Aunt and see what they say in Chennai, at least they seem to know Vignesh's medical history you would also have gotten another opinion about whether things were handled in the right way. I feel we must talk to our doctors, I know here in India people are always so wary of doing so, as if doctors are Gods but don't fall into that trap, you have every right to ask as many questions as you choose, write them all down and don't leave till you are satisfied with your answers.