The magic chair

Vignesh had started to sit with support somewhere around May this year.



His therapist recommended 'side-sitting' (as seen in the photo above) and told that he would be able to sit without support in a matter of few days or weeks. But, he refused to sit on his sides even for a few minutes. He would sit for short periods of time in 'straight-sitting' posture but his therapist wanted us to avoid it for the starters as it might not help him gain necessary control.

Since, he never did his exercise there was no improvement and it began to bother us. That is when his physiotherapist suggested us this magic chair. He had a person, specialized in making furnitures for therapy purpose, custom design the chair. It was made for Vignesh's measurements. We got this ordinary-looking, magical-chair around the second week of August.



Once we got the chair, we made him sit in the chair almost every minute that he was awake (at least during the first 2 days). Vignesh just loved the chair because for the first time he was able to freely use his hands to play instead of being bothered to use them for support.



And, the miracle happened. When we went for therapy after about 3 days of getting the chair, there was tremendous improvement. Within just a couple of days, he began to sit without support. The result was so quick that at first I even felt it might just be a coincidence.



So, I began to relax and made him sit in the chair only during his feeding sessions. Incidentally, there was no progress and Vignesh was able to sit unsupported for just a few minutes. I understood my mistake and began to make him sit in the chair for longer time. Now, he can sit unsupported for nearly about half-hour, if he wants to. Sometimes, he is too lazy and would just prefer lying down no matter how many times I make him sit.



The chair has helped Vignesh so much. I'm so thankful to his therapist for suggesting this chair.

Rigid Broncoscopy - Good and Bad News

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.

Tracheostomy hurts the most when.....

My son's tracheostomy hurts me the most,

When I see him scared and crying on hearing other kids at his therapy class cry aloud. How can I make him realize that if not for tracheostomy his cry would sound similar too?

When he looks with interest and astonishment the babbles of smaller kids. Shouldn't he be a participant in the childish conversation rather than being a silent spectator?

When he stares at my lips when I talk to him. And, at times when he tries to imitate me by moving his lips and no sound comes out, I can't just tell how much it pains.

When I attend his speech therapy sessions. How can I try to teach him lip movement and ask him wait till decannulation for him to hear the sound?

When I'm unable to hear the music of his laughter.

Sometimes, when I'm busy in another room and come to find him crying, it makes me feel miserable.

And, it hurt me so much one particular day. I was sitting before him and talking to him. He moved his lips and no sound came. But, I could feel him wanting to talk to me. I could see pain in his eyes. I felt helpless. I hated myself for not being able to do anything about it. His expressions are more likely my imagination. It might sound too far-fetched. But, I can't help wonder what if it wasn't just my imagination. What if he really wants to talk? How can I make him understand that this is just a temporary hurdle? That it is just a matter of time that before he can talk too.

I'm back!

I'm back after this long silence. I had been too busy in August. Not the regular busy carrying out everyday activities. Rather busy emotionally. Crowded with emotions ranging from anger to guilt to self-realization. And, this has got nothing to do with my son.

These emotions arose from problems that started way back. Five years back to be precise. I had been wronged and cheated. That too for being good and helpful. For four years I had been fighting bitter battle with people for justice. I fought it alone. It was such a traumatic period. I was emotionally broken and the stress began to take a toll on my health too. But, I did not give up fight. I kept fighting till I was paid back whatever I lost. But, they were able to only pay back my monetary loss. No one cared about all the emotional pain that I was put through.

So, last year when I got back whatever I lost, I was happy. I thought I had won my battle and the problems were finally coming to an end. After my son was born, these same people began to come into my life again. All that I expected was a sincere apology for making me go through so much trouble. But, I received none. They just came back as if nothing happened. I was expected to behave the same way.

With so many hospital visits for Vignesh life was getting hectic. Since, these people came over and helped me take care of the home, I began to relax. But, deep in my heart I could not just forget all the bitter years. A lot of times I thought I would make peace with them. But, whenever some difference of opinion arose, all my anger would swell in my heart. But, I had to be nice since it was my house and they were my guest. I was leading a life of double standard and it was killing me from inside.

At times, I would even feel guilty for being angry with them since they were helping me out with Vignesh. But, at the same time a lot of things around me began to change. I began to lose my independence. I began to feel a lot of restrictions on my life. A lot of times I began to feel like a stranger in my own house. That is when the alarm rang inside me. I had already had enough in my life because of these people. I did not want them to ruin my peace of mind again. But, there was nothing that I could do because they were my guests and I had to be nice to them.

So, to make this long story short, last month there was a small argument. That was enough to trigger all my emotions. 5 years of anger and frustration came pouring out. I demanded answers for all the injustices that they had done to me. I was even more angered to find that they did not have any sense of regret or even apprehension for have been so unreasonable towards me. That was the limit.

I finally severed all my ties with them. After the incident last month, I went through a lot of emotions - guilt, anger, fear, peace, etc. I was unable to decide if I had done the right thing. All of a sudden only yesterday the simple truth struck me. Whatever I said during the fight was what they had done to me. If that should offend them, it was not my fault. It was just because they were so ashamed to face the reality. I don't want to be good or bad. I just want to be right. And, in my knowledge I had done whatever I thought was right.

Finally, I have found peace. Five years of burden that I had been carrying has finally been thrown away. Thrown where it belongs. And, its time for me to move on with my life.

Guess who had the last laugh....

Photoshoot

For a long time, I had wanted to get portrait photographs done once Vignesh turned one. So, had about an hour of photo shoot for Vignesh last Sunday. I was worried he might end up crying or giving us a tough time. But, he posed for the pictures beautifully. He was so fascinated by the flashing lights that he did not mind sitting on his own for a long time. Of course, his father and I had to sing aloud a funny version of 'yankee doodle' and 'Johny, Johny' to make him smile.

Oh, the really difficult part was selecting the photos. I had to select just 8 out of the 52 photos that they had shot. Here are the photos that I chose.

Hospital Visit

Vignesh's regular hospital has moved to a new premises. Initially, pediatrics was a department in the hospital and now they have opened a separate hospital for kids. The inauguration was held on Thursday. Last time we went for tracheostomy tube change, they had invited us for the inauguration. Already with so many hospital visits happening we weren't planning to go. But, looks like Vignesh was keen on honoring the invitation.

On Wednesday, he develops cold and slight temperature. And at around 8 pm in the night, we notice that he is desaturating. So, we rush him to the hospital. He gets so tired and fussy. They give him few medications, injection (through IV line) and oxygen support. On Thursday, he meets the doctors who had invited him. By the end of the day, he is fit and fine. So, with the satisfaction of keeping up with the invitation, he is happy to come back home on Friday.

My favourite part is the way the nurses fuss about him. The nurses who attended to Vignesh when he was in the PICU during tracheostomy. Even though most of them have moved to different departments in the new hospital, when the word gets around that Vignesh is in hospital, they make a point to drop in and say hello to him. They just love to see things that he has learnt. They would want to take him around and play with him and there is also a tight competition of who gets to carry him around. They just show so much of genuine love.

At a time when Vignesh was on prolonged ventilation (during tracheostomy) and I wasn't allowed to be with him, they were the people who took care of him so well. They took care of him with the dedication of a mother. I'm so grateful to the doctors who have saved my son. And, I'm equally grateful to the nurses there. A noble profession done in a noble way.