Monday, October 26, 2009

Home School

We have decided to home school Amaey until the end of winter. The H1N1 is rampant and his immunity is going to be compromised with this intense round of treatment. We haven't ironed out all the details yet but as a first step we have talked with the school district so we will take one step at a time. 
When we told Amaey about our decision he had 1 condition, provided we give him 2 playdates a week with his best buddies.
So now I will add, amaey's social planner, in my job title as well.
I don't think we can avoid germs and life from happening around him but we can definitely limit the exposure and help him stay healthy through the worst months of the season.

Amaey is home

We got the green light to bring Amaey home today. His counts are up. Ofcourse if you see him today you couldn't tell that this kid went through so much suffering. Kids are just amazing. I do not know how they do this. 
Arjun does not have fever either so it was really nice to come back home and have a happy healthy family to be with.
I must say that we haven't quite figured the coming back home day very well. We somehow have the energy while we are in the hospital but when we come home Apurva and I suddenly feel so tired and then we have Arjun who wants all the attention because he hasn't seen the family in a while and Amaey wants to be the king of the house because he is the one coming home and by the end of the day we just feel so incapable of managing everyones expectations.
Well, I can't think right now but this back home day definitely needs a little fine tuning.

Saturday, October 24, 2009

Guess who ate today

I went home last night to find a really slow Arjun. He had been waiting for me and fell asleep on the sofa in the living room. He seemed warm to me at night so when he woke up in the morning I took his temperature and sure enough he had fever. Poor baby was feeling really sick today. I stayed with him the whole day. His fever kept coming and going. He has been quite a trooper and he ate some dinner before I left for the hospital.
While at the hospital Amaey's fever had not returned so at least that was a relief.
Apurva is home with Arjun now and Amaey and I are in the hospital watching Looney Tunes. Amaey had a food request so I made him corn soup and cheese quesedilla and apple cider bread. It was wonderful to watch him enjoy his meal.

We are still waiting on Amaey's culture but we do know that his flu swab and chest xray were negative. He is still neutropenic so they will not let us go home until his numbers come up to a safe place. Right now with Arjun sick we would rather have Amaey in the hospital so that both get to recover and not catch each others germs.
That's All Folks!

Family and Friends

We know that everyone is concerned about Amaey and our family. Lot of friends and family have called to ask how they can help. We just want to say that we are touched by your love and support. Right now we have my parents so support, food and Arjun are taken care off. Other than that there is not much to do. Apurva or I prefer to be by Amaey's side when he is in the hospital. If he is not in the isolation room as he is this time, we love to have friends stop by. Amaey likes company too.

Once my parents leave we will reach out for help. Until then just send good positive thoughts our way. Amaey is a special child and he has a lot to offer to this world. We want to see him grow up and put this all behind him. 

No fever

Apurva is in the hospital with Amaey today. Amaey picked up the phone and talked with me. Wow, he sounded much better. Apurva said he ate a little which is wonderful compared to yesterday. He did not get a fever last night and we hope that it stays that way.
He is getting 3 kinds of antibiotics and to be safe they are also giving him flu medication. One of the antibiotics gave him an allergy so he also gets benadryl.

When I took him in on Thursday he was so weak. He did not move for the entire day and slept the whole of Friday. I could not motivate him to move, smile or do anything. It was really sad to watch him feel so bad. That is not Amaey, he will always make an effort but when he is so low it means he cannot take it anymore. Finally around 7pm I did force him to watch Project Runway with me and then he asked to change to his favorite Food Network. Slyly my plan worked and I was happy to get him out of his funk. When I left the hospital he was eating his banana and dhokla that Ba had sent for him from home. 

Friday, October 23, 2009

Amaey in the hospital

I had stopped contributing to the blog because, a) I felt tired writing 
about what we are going through b) things are as per protocol 
c) life is just plain busy. However, I have a lot of friends calling and 
emailing and then family all around the world wonder about him.

The last 2 weeks have been particularly hard for him. He started 
his delayed intensification on Oct 12. The 3 days in the hospital 
with chemo completely knocked him down this time. He had high 
fever the entire time and came home with it as well. After a few 
days of rest he was feeling better yet not his best. On 19th we went 
in for his routine blood test and later that day they told us Amaey 
was neutropenic and needed a transfusion. So on 20th I took him 
for that. He usually perks up after a transfusion but this time around 
he did not. He was still dragging his feet around the house and not 
really eating anything. On 22nd he threw up in the shower, I got 
worried so I emailed his doctors. I wanted them to take a look at 
him when i brought him in for his routine blood test.

They decided to admit him based on the symptoms. He had a high 
fever too so now he is in for at least 3 days. They are trying to rule 
out the flu or H1N1 or any other infections. I have never seen Amaey 
so sad and that really breaks my heart. He is such an upbeat child, 
looks at the positive side and takes everything in his stride. Right now 
he is being pumped with so much more medication. I don't know how 
a little body can take all this toxicity. 
I believe in silver lining but I really do not see one with all of this pain 
and suffering.