Vignesh at play

Vignesh loves to play games but he does not prefer toys so much except for the ones that makes noise like my cell phone (if it can be counted as a toy) and rattles. When I discussed it with his therapists, they said he hasn't still begun to understand the concept of playing with toys. I did not think so because he understands games very well and even comes up with his own little games at times. To me, he simply did not prefer toys.

When I got this leap frog 'spin and sing' on Monday, I had my own doubts. Was I wasting money on something that he wouldn't be using and should I be getting him therapy related items instead (as suggested by my husband?) But, I did not want down syndrome or his therapy to dominate every walk of our life. So, I went with the option of getting him toys.

When I got back home, I just showed him a couple of times on how to play with it and he immediately caught up. And, like most other toys, he plays with it just for a few minutes and throws it away. So, he does in fact understand the concept of toys but does not prefer playing with them on his own. Here is a video of him at play.

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.

Tracheostomy Update

Vignesh's bronchoscopy was done last Monday. I'm a little upset that he wasn't decannulated but I'm more worried about the manner in which his bronchoscopy was handled. Confusion prevailed all along. To start with, we were given appointment at 10.30 am and Vignesh was on fasting for 4 hours. But, when we reached the ENT's reception, we were informed that he was busy in the OP all morning and hence the procedure would be taken up only in the afternoon. So, I immediately fed my son. As soon as he finished his drink, the doctor came and asked us if we are ready for the procedure. Not sure where the miscommunication happened. Anyway, since we had fed him, we had to wait till noon in the PICU. We were also a little worried to know that the pulmonologist who usually handles bronc for my son had moved abroad.

Vignesh was happy and playing with nurses in the PICU. Then, there was this routine pricking for an IV line. And surprisingly by noon he went into deep sleep even without the sedation. So, by 3 pm the procedure started. They wanted to observe the movement of the vocal chords to make sure it was functioning fine. And, this can be observed only when he isn't completely sedated. So, they began the bronc without sedation and we could hearing his crying standing outside.

In about 15 minutes, the procedure was over. The doctor informed us that his airway has improved drastically. There was no redness in the region and even the swelling was gone. However, we have to wait for another 6 months before giving a try. He left saying that he would be in the hospital until 8 at night and we could contact him if we had any questions.

There was a little disappointment but we were happy that his airway is healing on its own. Vignesh was deeply sedated and they told us that once he wakes up, we can take him home if he tolerates the feed. So, we had him discharged by evening. And we got back to Chennai by Wednesday last week.

Tracheostomy Assessment

We are in Bangalore now. Came here today morning. Tomorrow, we are meeting the ENT for Vignesh's tracheostomy assessment. Its a different city and a different hospital. So, there is always an increased tension. On the bright side, from both the previous assessments we had at the hospital here, we know that the doctors are experienced and know what they are doing.

The appointment is at 10.30 am tomorrow.So, they would be starting the procedure at 11 a.m. I'm scared not so much about the result of the assessment. Because, if not now, we would again try in 6 months time to decannulate. I'm more afraid of the mental trauma that my son would need to undergo. He has grown up so much since the last time we came here (that was in June last year). And, since his hospitalization in December, he gets agitated when we try to restrain him. Probably because, restraining him reminds of the numerous painful pricks he had at the hospital. I hoping that it would be less painful and traumatic to Vignesh tomorrow.

And, the most difficult part for us is to wait outside when the procedure is in progress. There have been too many bronchoscopies and too many disappointments before. Until the doctor comes out and says the result, we would be extremely tensed. Anyway, I'd make it clear to the doctor even before they start the procedure to go in for decannulation ONLY IF the swelling in the airway is completely cured.

Please pray for Vignesh. We really need it.

Would provide an update about the result of the procedure as soon as I can.

Vignesh Photos

Vignesh has inherited this 'look' from me!

My son can crawl really fast but in the reverse direction! That still counts as crawling, right?



Yeah, thats meant for bathing. But, I got it so that I can put his toys in that and easily move him around the house.

I made him sit there to play with his toys while I was busy with cooking. Within minutes I turn back to see him in this pose.

And, here is my favorite smile!

Hosptial checkup

We had gone for a check up yesterday. Vignesh has started to sweat in the head again. Head sweating is associated with heart problem. He had head sweating from birth until few weeks after surgery. And, when the problem started again about 2 months back, I was really worried. We took an echo and thankfully there is no problem with the heart.

When I googled about it, I saw that rickets could also cause head sweating in children. Rickets is caused by vitamin D deficiancy. Our place has at least 9 months of summer and if Vignesh couldn't get sufficient Vitamin D that is available in the sunlight, I would be surprised. Anyway, would wait for the result to see what it is.

We gave him chicken pox vaccine and polio drops yesterday. It was funny that he did not cry for the injection but ended up crying so much when we restrained his legs and hands for the x ray. I guess he was reminded of the IV line pricks.

The schools and offices would be shut for 2 or 3 days for the pongal festival. But, my hardworking son has just a one day holiday tomorrow. I still have some last minute shopping to do. The only time I get to do shopping is during his OT sessions. Vignesh refuses to do OT when we are there. So, that is all the time that I get to shop for whatever I need.

Last year this day he was in hospital. As a matter of fact, this was the day he became really critical. The memories of him slipping into seizure due to dipping oxygen levels is still painful to think. Later on this day last year, he was moved to a different hospital and put on ventilator. And, this day last year was the last time I heard his voice properly. After that, it was just ventilator leading to tracheostomy.

I'm thankful that my son is healthy and happy now. This is the first time he would be celebrating pongal. Would post picutures of Vignesh celebrating pongal tomorrow.

Pongal - The harvest festival begins!

The 4 day harvest festival begins in my state. It is one of the grandest festivals here. The tradition began centuries ago when agriculture was the only major occupation of the entire state. The best thing is that, although today cities have nothing to do with agriculture, the tradition is still very alive.

Today is bogi and it is the day that we thank the rain god for helping in the harvest.

Tomorrow is the main festival pongal where we thank the Sun god. It also marks the beginning of the 'spring season'. The tradition is to cook 'pongal' (rice with pulses) in mud pot outside the house at the time of the sun rise.

The next day would be 'mattu pongal' is dedicated to the cows and bulls for helping in ploughing the field, etc. The thing I hate about this day is that in the southern districts of our state, they have these bull fights. These bulls are hurt badly and most of the times some human lives are also lost. The animal welfare organisations have been trying to get a ban from the court. Since it is an old tradition and involves human sentiments, the court is refusing to ban this. However, bull fights are now regularised. They have to get prior court permission and the entire event has to be monitored by the animal welfare members to make sure that animal isn't totured in any way.

The fourth day is kannum pongal. There are two types of celebrations. For a section of people, it is more of a picnic day. For others, it is the day when women offer prayers to God for the wellbeing of her brothers. My tradition falls in the second catergory.

The festival is celebrated under different names and for different reasons in other states of India.

A tiny, white sprout!

I see a tiny white sharp sprout. It is one of the most beautiful things that I have seen! I have been waiting for this for months! YAY, my boy is teething! A tiny teeth is erupting in the center of the bottom row. It is still too small and hence can't always be seen when he smiles. And, when it does, I'll wait with my camera to capture that smile. And, more importantly, he has already started to put the teeth to use and his mom's nose had the honour of being the first thing to be bitten. My lucky nose!

Getting back to therapy!

After a long break, Vignesh is getting back to therapy from tomorrow. He has been missing his classes since the last week of November. I'm happy getting back to the routine. But, I'm not so sure if Vignesh would be excited about it too. Got to see his reaction in the class tomorrow. In the meantime, just wish my little boy luck. Because, his mom is so demanding. Instead of setting goals for herself, his unresonable mother has prepared a mental checklist of things that she wants Vignesh to achieve by the year end.

Meet you all tomorrow with the updates!

Happy New Year!