An Amazing Feat

Today we had Vignesh's tracheostomy tube changed since the previous one was getting dirty. It was done by the ENT who had done tracheostomy for Vignesh 5 months ago. I told him about how Vignesh was breathing through his nose these days. The doctor confirmed it. Later, I asked him about the speaking valve (not sure of the exact term) and if I would be able to get one for Vignesh in Chennai. He felt it was highly improbable. Instead, he wanted us to close the trach opening for short intervals and encourage him to speak. This is one thing I'm extremely scared of and uncomfortable with. Every time I close his trach I feel guilty. I feel like I'm harming him deliberately. I just told the doctor that I was scared of doing this. That is when it happened.

The doctor kept a gauze piece over Vignesh's tracheostomy opening and closed it with his finger. We were simultaneously monitoring his stats. Once he closed the opening, I was expecting the stats to fall because in March he wasn't able to breathe without the tube support even for a few seconds. It was a complete miracle. Vignesh maintained his stats between 94 - 96% with the trach tube closed. And, the doctor had the opening closed for about 8 to 10 minutes. He might have even continued for a longer time if we had continued the exercise. Except for a slightly increased effort, Vignesh breathed beautifully on his own. It has given us something to cheer about and filled us with new hope. Way to go big boy!

Vignesh turns 1 - Birthday party pics

Blackforest cake from mom n dad


Strawberry cake from aunts


Cake cutting with mom


Cake cutting with dad


Getting down to business


The Picture says it all


Heres more


Time to relax

Vignesh Birthday Celebrations

I had been away from internet for a long time. Therapy center is a little far from our new home. Also, I'm still setting the home. Above all, was busy with Vignesh's birthday celebrations. I had previously thought about postponing his star b'day celebration until decan. But, after the last visit to the doctor, I did not see any point waiting. So, we went ahead to celebrate his star birthday in the traditional way on the 5th of this month. And, his 'official' birthday party celebration (based on the sun sign) was yesterday. The house is still in mess and there is a lot of cleaning work to be done tomorrow. Ok, before I begin to rant any further, let me just go ahead and post some of his b'day snaps.


July 5th Snaps


With parents during the religious function



Two most important people in my life - my father and my son



With the religious mark on forehead



With dear mom



In kurta and dothi



Paying respect to God


Tired posing for pics

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.