Wednesday, December 30, 2009

The other side of down syndrome

The geneticist who handed over my son's trisomy report was a horrible person. I'm not saying this just because of the list of things he was so sure my son would never be able to perform. ( I'm so surprised how education makes some people assume the role of God that they think they can go about predicting the future of people whom they consider 'lesser beings') He went a step beyond that and wanted us to take up the issue with my gynecologist for not educating us about the down syndrome test during my pregnancy so that we could have done the 'needful' to avoid the birth ( Ok, with a great effort I'm now controlling myself from using abusive language against him)!

This post isn't about what happened that day. I'd probably write about that story some other day. This is about the other side of down syndrome which he failed to tell us on that day. This is something that we are learning in our everyday journey with our son. Ok, let me tell this with a story that happened recently.

As you all know, Vignesh was in the PICU a few days back. Sometimes, my husband or I would leave him with the nurse for a few minutes to catch a meal or change shifts between us. And, most of the times when we are back, there would be a big group of nurses on Vignesh's bedside. Actually, the first time my husband saw this, he panicked. He thought something was wrong and ran to see that they had all come to play with my son.

There is about 5 or 6 beds in the PICU arranged in a straight row. So, the doctors just keeping moving up and down the room. And, almost everytime the senior consultant doctor passed my son's bed, she would stop, smile at him, and baby talk. I'm not sure if I gave her some odd look or she just felt like explaining it, she told me that she is not able to pass my son without talking to him or smiling at him.

There is a whole lot of people from infection control department to technicians who would come and play with him. At a certain point, it bothered me. He was having so many visitors that I began to worry about infections.

And, one day I was just walking outside to grab a cup of coffee. A lady from housekeeping came to me and asked if I was Vignesh's mother and how he was doing. I go to pharmacy and people ask me about my son. And, a person from guest relations department came and told me that my son was very famous there.

And, when he was leaving the hospital, all the nurses in the HDU in the shift were there to wave him bye.

A few doctors like his ENT visited him and specially mentioned to the nurse not to charge for the visit since it was more of a casual visit to see him and not for any specific medical reasons.

My son was in the hospital for about 15 days and his pediatrician would visit Vignesh at least twice everyday. He refused to charge us even for a single visit.

All these might seem like a brag and exaggeration. Its a brag, yes! But, definitely not a exaggeration. So, wondering whats the whole point? Its a huge and probably the biggest hospital in my city. These nurses, doctors, technicians or the cleaning staff see so many patients everyday. I don't know for what reason, for a lot of these people Vignesh wasn't just another boy. He was special and he was treated with special love and care. Few of them knew about his down syndrome and a few didn't. But, it did not matter. They loved him for what he was, the way he was.

Whether they knew it or not, I guess it is the extra chromosome that was at work. I have seen it so many times on so many blogs. How the designer chromosome could cause an infectious smile that could easily brighten a person and win over hearts! How some gynecologist or geneticist advocating against down syndrome turn a blind eye towards the this beautiful side is just beyond me!

Tuesday, December 29, 2009

My knee pain problem

I'm worried. I've developed knee pain in the past week. My right knee is getting worse and I'm literally limping since today evening. I have always feared this. In less than 3 years, I have gained a lot of weight and I knew if I didn't work out this day would eventually come. I have seen my mother go through all this. She had knee replacement a couple of years back but still has pain and restricted mobility. So, I had always feared and wanted to avoid this.

I'm just hoping this isn't anything serious. I'm calling up the yoga center and fixing an appointment tomorrow. I'm so reluctant to see an ortho because it would eventually lead to my weight issues. It would bring in a sense of guilt and shame. I have honestly tried a lot of things from diet to aerobics to walks. But, I'm either too busy or too tired to continue working out so I give up. But, now there are no excuses. I can't afford to be unhealthy especially now. I guess I would take the opinion of the doctor at the yoga center and proceed as per his guidance. I'm just hoping that with some luck it turns out to be some simple winter time knee pain.

Sunday, December 27, 2009

Vignesh Photos

Vignesh at hospital PICU - Taken during the first week of this month

Back home and on oxygen support

Back in form

Exploring his new bike

And, this is what happens when you sing to Vignesh his favourite rhymes:

And, more

and, more

And, more

Just makes me wonder, if he is happy to hear the rhyme or is it my voice that he is laughing at?

With his great grandpa

Tuesday, December 15, 2009

Back home!

Vignesh got back home from hospital yesterday. He still needs a little oxygen support. I'm just worried about his diarrhea since yesterday. The frequency has increased despite the careful diet. Anyway, keeping him hydrated with a lot of fluids. He has also lost a lot of weight. Will post a picture of him tomorrow.

Anyways, when we got him home yesterday he was all dull and sleepy. Then I played him his favorite rhyme on tv and he was happy and even started to dance. He is happy to be home. Just waiting for him to get over these minor health issues. Due to tracheostomy, we had restricted his movement outside home. And, due to this oxygen support, we are now having to think twice before we could move him around even inside the house. Thats all for now. Thanks again for all your prayers and thoughts.

Tuesday, December 8, 2009

Quick Update

Vignesh is recovering and is active most of the day. Expect for the desaturation issue, he is otherwise doing great. He is still in PICU though and they are gradually reducing the CPAP dependency. I'm just worried about too much of antibiotics that he is receiving. He is receiving three different antibiotics a day now. But the doctors say that we can't do without it. Anyways, can't wait to get out of the hospital. Thanks for keeping him in your thoughts and prayers.

Saturday, December 5, 2009

Latest Health Update

Yesterday morning Vignesh had temperature spikes with the 2nd antibiotic too. And, suddenly after breakfast, he began to desaturate. They kept increasing the oxygen level to 13-15 litres. But, his stats still fluctuated between 87-93%. And, his breathing was also rapid. So, they shifted him to PICU. And, for the third time they have changed his antibiotic. They say that with so many hospitalizations and medications, his body has become immune to level 1 and level 2 antibiotics and they had to step up to a stronger one. Vignesh is right now on C-PAP.

So, yesterday his blood culture report came. And, Lisa you were perfectly right. It is pseudomonas. The report also carried a list of drugs the bacteria is sensitive too. The second antibiotic which they had given yesterday was in the list. So, this should have helped him fight the bacteria but strangely it din't. So, they want to continue with the 3rd antibiotic that they have started him on since it is a stronger dose.

My husband is staying with my son since yesterday night. I spoke to him over the phone and Vignesh seems to be better now. No cough. Temperature is just around 99 F and he is fairly active and even watched TV today morning. His Oxygen support on CPAP has also been reduced to 35%. (They had started with 70% support yesterday noon).

Its so frustrating. The hospitalizations just deprives us of the quality time that we could spend with Vignesh at home. And, it also affect his therapy causing so much delay. And, every time they prick him, they are finding it hard to get a vein. So, they end up pricking him in so many places on his body. Its frustrating that I can't help. I feel physically and emotionally exhausted. But, at least a good nights sleep makes me active again. It is this emotional exhaustion that I find so difficult to cope up with. I think once he is fit and the doctors say we can take him back home, I would feel happy and alright. My husband and I are just waiting for that. Thanks for all your prayers.

Thursday, December 3, 2009

Health Update

I had written the following update day-before night but couldn't post it. So, posting it now for continuity:

Vignesh's reports have started coming in. Blood culture report shows gram negative bacterial growth. However, we would get the complete report only tomorrow. In the meantime, the new antibiotic and cough medicines seem to be effective. In the past two days, Vignesh has had temperature spikes just twice last night. Coughing has also reduced considerably. But, his breathing is still fast and his statuaration dips to as low as 73 - 71 without Oxygen support. Also, he is sleeping most of the day and stays awake and active for just about 3-4 hours a day. Still not clear when he would be completely cured.

In the meantime, I thought I could post this video that I taped last week. Can't believe how things have changed in a week. I miss seeing him smile and play, keeping me busy all day. Just waiting for him to recover and get back home soon.

Tuesday, December 1, 2009

Vignesh hospitalised

Vignesh is hospitalised since Saturday. He is on oxygen support and is suffering from fever, severe cough and diarrhea. None of the medicines given so far has helped to cure his fever. They just reduce the temperature temporarily. The most worrying things to me are his cough and oxygen desaturation. He wakes up all happy and ready to play. But, then coughing begins and it is so severe and continuous that he turns red, gets tired and goes back to sleep. And, other than liquid diet, all other types of food just starts off his cough (he was unable to eat even his favourite chocolate doughnuts today). His apetite too has reduced drastically. It just pains to see him like this.

They have changed his antibiotic for the third time. Today, they have actually started Vignesh on a more effective one. So, got to wait for a day or two to see if this helps. But, even now his temperature is over 101 F. They have also changed his cough syrup to a more strong dose.
The good news is that his H1N1 test has come out negative. Blood culture report for virus infection is expected in a day or two.
Even as I'm with Vignesh at the hospital, I just wander between the two extremes. At one time, I feel peaceful. There is so much of hope that we are getting back home pretty soon. At other times, I'm unable to control my frustration. For instance, on Saturday the doctors had tried to find an IV line. In the process, they ended up pricking so many places on his hands and legs. Just hearing to his muffled cry was so unbearable. I run away from the place. I ended up crying in front of everyone. But, I could not do anything to make his pain go away. In fact, he looks up at us when he senses trouble and I feel so helpless being not able to do anything. Now, he is so suspicious of everyone in the hospital that he panics and cries when anyone else other than my husband or I go near him. And, it so pains to see that he has stopped trusting us for help when doctors or nurses go near him. It makes me feel miserable.
Today, even as I set the internet on my laptop, an idea struck. I began to play rhymes to Vignesh from 'You Tube' and also his fav 'ABC Zoo' game. He was happy and got all excited. In fact, he even began to bang on the laptop with both the hands (incl the one with the IV line). But, pretty soon he coughed a bit, became tired and fell asleep. I have asked his dad to fetch Vignesh's favourite rhymes CD tomorrow. I guess this would cheer him up so much.
I just want to him to be completely cured and get back home strong and happy as soon as possible. I believe that prayers could really perform miracles. Please pray for my son's speedy recovery.