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.

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.

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.

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.

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.

Yes, we got it!

The search is over! A company has sold us health insurance. Vignesh now has his health insurance just like anyone else his age. And, just like anyone else we just had to give his medical reports for getting the insurance. We were so unhappy about the discrimination in the insurance system. Now,we are extremely happy and at peace. While we're excited, we hope that he stays healthy and we never get to use it.

I'm so thankful to the person who helped us through the procedure and the insurance company for treating my son without any discrimination!

Project Darya - A Grand Sucess

Its a happy thanksgiving story. Darya has been gifted with a loving home for thanksgiving. Hats off to Lydia who has raised over $265oo in just 8 days and the money is still pouring in. Lydia has achieved the impossible. I have learnt a couple of things from Lydia.

That a good-crazy-love can succeed over grownup-experience & logic. I have followed my heart when I was young and as I grew up, I suddenly stopped believing in miracles. So, next time I feel strongly about something, I will follow my heart rather than pondering if it is impossible.

Next time I read or hear a cruel remark about disability, I would understand that these people are just a minority and that there are a majority of people who value and respect people with disabilities. Because, if not for the financial help and the prayers of a lot of people it would not have been possible for Lydia to achieve this tremendous feat.

And, above all thanks Lydia for reminding me the value of faith and hope.

P.S: If you haven't been following Lydia's story yet, you can do so by clicking here.