27 June 2010

Is hoping

That this trip home with family will help deal with this new turn of events in our lives. Having a child with a rare disease turns your world upside down and you need the support of family and good friends to help you deal.

21 June 2010

Bad News - My son is sick

It has been a week or so since some bad news has been confirmed.

My 7 year old son was recently in the ER back in April with pneumonia. he was given some IV meds and sent home. We thought everything was well. About 10 days later, he had abdominal pain again and off to the ER. They gave him different Antibiotics and sent him home again. Within a day he spiked a fever of 105 and then again. This time he was admitted to the hospital for severe pneumonia with unknown cause. Not good. He then was given different antibiotics again via IV for the next 8 days. The worst part is he looked fine on the outside but was very sick on the inside. Unfortunately due to his illness our trip home was cancelled/postponed we have yet to see.
While there the doctors did all kinds of test trying to figure out what was going on. Towards the end of his stay there is a possibility that they may have discovered what it is and it is not good.
A few days later they confirmed their suspicions, my son most likely has a rare disease that effects his immune system called Chronic Granulomatous disease a.k.a CGD. The doctor decided that one test was not good enough and we tested my son again and the same results were returned a week later. So now it is almost 99% sure that he has CGD but 100% wont be known until after the results of the genetic testing that the National Institute for Health will be doing.
This has been very hard on me. I have read up on this disease and there are so many stories and some of them are very sad. I love my son with my life and can't imagine a life without him. I am so afraid of losing him. He is a constant joy to me. As this disease is so rare, there real is no support group in our area and the doctors are only vaguely familiar with it so I have to look for good sources on line.
He has had to start taking anti fungal and antibiotics that he will take for the rest of his life to help his small body fight off the things his white blood cells are unable to do. The danger infections for him are any bacterial and fungal infections. The worst part is that since his body can't fight these, his body does not show normal symptoms that he is sick. We have to be ever vigilant, watching for any little sign of sickness.
I wish I could be near my family but currently I don't have that option unless I want to quit my job and let whatever happens to our home happen. That is not a logical or realistic thought so I will continue daily to search for work closer to home.

13 April 2010

Ramada Airport North Hotel Charlotte - 1st Stop to Jamaica

I was going to do an overall post on our trip to Jamaica but realized it would probably be very long. So I am going to start with the first hotel we stayed in. It was the Ramada Airport North Hotel in Charlotte NC. I decided to get a hotel room because we were leaving super(0600am) early in the morning out of Charlotte which is a good 2hrs and 15mins from us.

Now to the hotel, I booked from the Ramada website directly just so I would have more flexibility and the price was reasonable. The last time I booked with them was on our trip to Maggie Valley and the room was great. This was one on the other hand left room for many improvements.

The first room we were assigned smell so bad that there was no way we could stay there. The second room smelled fine but when I pulled back the sheets, they were dirty. The third room was fine. The carpets are VERY dirty. I would not step on them barefoot and when my son walked on them with his socks, they became filthy pretty quickly. It is certainly a basic hotel but I was not comfortable with the area based on how it looked. I do have to say the front desk person was very good about switching rooms though.

The hotel's restaurant was under construction but they had a sign that said you could let them know if you want something and they would call the cook. I found this very odd and certainly did not feel that was a way to handle it. I was going to order something but for about 15 minutes the desk was unattended so we just left.

When we checked out in the morning, I had to ask specifically for a receipt. After I made it to the airport and I checked it, they hadn't even officially checked me out of the room as it said on the receipt the cost was still owing. This made me very paranoid and I am still waiting to see if I get charged more than once.

The pictures are of the second room, I got tired of taking pictures of the new room but it gives you an idea of how it looks.