Wednesday, July 1, 2009

And, the hard luck continues

So, its back to the same place where we started 5 months back! My husband and I were nervous and our eyes were filled with tears even as we waited outside the PICU. We were called in sooner than expected. We could hear the doctors discuss the case which made me realise that decan wasn't successful. Anyway, I asked my husband to first peep inside and see if the trach was still in place. He said that it was. He also wanted me to come and have a look at Vignesh, who was in sedation. I did not. Probably, I was shying away from facing the truth.

Doctors came and told us that things are as bad as it was 3 months back. Looks like it isn't as simple as it seemed then. There was no improvement in the tracheal edema (subglotic stenosis) and there was still significant laryngomalacia. So, decan wasn't even attempted.

I just listened to what the doctors said and my husband asked a few questions. I just stood there, nodded my head and even smiled!!! I felt as a mere spectator and watched as if I was in no way involved with all this. I just took all the sorrow and locked it up in a corner of my heart. And, this place in my heart is growing heavier by the day as I have started to lock away all my disappointment and worries for months together now.

Since then, I have just shed a few tears - once yesterday night where I cried into my pillow and then today morning locking myself in the bathroom. But, it was just for a minute or two. I'm afraid to cry because it would pain. Because, it would remind me of all the things that we are going to miss out due to tracheostomy. Of all the implications that this small tube would bear on the lives of 3 of us. I actually began to think of these yesterday, but along with tears, the feeling of helpless began to fill in. So, just diverted my mind. So, I guess I would cry my heart out the day my son is decannulated. It might take months or even years. Until then, these tears can wait locked away in a remote corner of my heart.


  1. S - my heart just breaks - Keep courage - things will get better
    You know what I see even with the trach out - your love and positive hope for your son and V's gorgeous beautiful smile
    He looks so happy S
    Keep hope
    Saying a prayer for V right now

  2. your son is beautiful and so is your blog.


  3. I just found your blog. You son is gorgeous. I'm sorry he's having such a difficult time medically. It's so hard to have hopes dashed. The sun with shine again, and there will be joy, even if it's impossible to believe that now.

  4. Sumithra,

    It is okay to grieve and mourn with regards to the trach today, tomorrow, a week from now. I believe acceptance of that little white piece of plastic is an ongoing process. My hand is in your hand comforting you right now and one day, just think, we can reflect back on this as a wonderful life lesson. Our son's are breathing now, and they will breathe tomorrow, and isn't that wonderful!

    Hugs to your family and to Vignesh, he is beautiful and he is breathing!

    All the love in the universe right now,

  5. Sumithra,

    A tight hug to you. And a kiss on forhead to Vignesh. Vignesh is in our prayers, he will be fine soon.
    Take care.

  6. Sumithra I hope you are well.