Sunday, June 1, 2008

A Little Q & A...

Why does Gavin drop his blood counts?

As part of his metabolic issues Gavin's bone marrow does not produce the same amount of red blood cells that you and I make, which if the first reason. Secondly, when ever Gavin gets any type of illness, cold or infection, his body goes into a massive inflammatory state called MAS. As part of the MAS both his liver and spleen swell to fill most of his abdomen and trap a lot of his red blood cells as well as his platelets, requiring multiple transfusions. Also, as a part of the MAS his white blood cells "swallow" his red blood cells. for more info on MAS see the link to your right. The last reason is that we tend to take a lot of blood for labs and because Gavin does not reproduce the blood adequately his counts drop.

Why does Gavin get so many fevers?

As part of his mitochondrial issues his bowels have greatly deteriorated making the bowel wall very thin. Because the bowel wall is very thin bacteria that we all have in our stool passes into Gavin's blood stream causing massive infections. These infection are all life threatening, though Adam and I speak of them like they are a common cold. His lipid also triggers the MAS, which mimics a blood infection and causes very high fevers. We never know if he is going septic (blood infection) of his fevers are due to inflammation, which makes our life a tad bit complicated.

Is there anything we can do to help obtain the Omegaven?

I would love to say yes but the answer is no. At this point we feel we can get the FDA to allow it's use for Gavin under it's "compassionate release", but the roadblock now is funding. It's something the hospital must fund, due to liability issues. We can't just come up with the money and they provide the drug. Omegaven is not FDA approved and comes with a whole slew of liability issues. You are always welcome to protest outside the doors of duPont yelling things like "free Gavin" or "show us the money" but I doubt this would be effective.

Is there anything we can do besides pray?

A nice Starbucks skinny vanilla latte would be nice -- joking, I promise. The thing that Adam and I treasure most of all right now is friendship. So many times people feel like they will be an inconvenience to us or get in the way, which couldn't be farther from the truth. Even though we know we have a huge support network it is hard at times to not feel like we are isolated from the real world. We find that practical things like a meal, an email or a message left on my phone make our day. Even though you all may not see the effects of your prayers -- we do. Gavin is still with us and Adam and I are still married -- that says a lot.


You all are amazing -- feel free to ask questions anytime and I will make sure I answer them in my posts.

1 comment:

britta said...

I just came across Gavin's blog, because I stumbled upon yours some other time.

I am in nothing of the same situation, but at the same time, I can totally relate to what you feel.

"Even though we know we have a huge support network it is hard at times to not feel like we are isolated from the real world. We find that practical things like a meal, an email or a message left on my phone make our day."

I will say a prayer and more for Gavin and all of you.

Peace.