Monday, August 17, 2009

8/17: Can we get some consistancy PLEASE?!

SO ... I headed to Tucson this morning and when I got here Kameron's vent settings were up to 100% and his saturation levels were right at 90 or below. That's a step in the wrong direction!

His subcute air (under his skin) has gotten a lot worse too. There were also some issues with his breathing tube, it almost sounded like it was leaking. (It makes me wonder why they don't just get this trach thing over with?!). They weren't sure what was causing him to need so much extra oxygen.

Then, Cindy Hatch (and her daughter) and Kay Ellet came by and then we headed out to lunch at Olive Garden (thanks again ladies - it was very delicious!!). Right as we were leaving the infectious disease doctor called me and told me that they got the cultures from the gunk in his lungs and ... it's Valley Fever. Grrreat. The interesting part about all of this, is back in June, they had suspected that Kameron had Valley Fever. They had tested him for it and from what I remember it came back negative. But, apparently he has had it all along and it has decided to rear it's ugly little head now. So, all day the nurse has been fighting to get Kameron's oxygen saturation levels up.

The worst part is the combination of the Valley Fever with the CMV, is very dangerous for his lungs. His lungs have already taken a beating and to get this on top of it, they're going to be in rough shape. And, the medication that they give him for the Valley Fever can be toxic for his kidneys but, she said that they would rather take the risk since he is on dialysis. There is also some concern re: the combination of the Valley Fever drug and the amount of steroids he is on. I guess the steroids can make the medication affect his kidneys even more. BUT, if they lower his steroids then the lupus will just get worse. If it's not one thing - it's another.

The neurologists are kind of signing off of Kameron's case for now, there really isn't much that they can do for him right now. She did say that he is still making progress and the main thing she is noticing is weakness, which is consistent with the areas of his brain that were affected.

Hopefully soon they can get the trach put in, get his CMV and Valley Fever under control and get some serious progress going!


Jill said...

Lots of love coming your way! What a roller coaster! I wish I could stop it for you! I am crying right now! Love you Love you Love you! Tomorrow is a new day!

The Youngs said...

my husband reminded me last night that his dad has Lupus too. I asked him why his dad isnt having as many probs as Kam and he said that its harder on people that are younger. Which is wierd to me cuz the younger u are the stronger ur immune system.
I hope Kam gets better. I pray for him and you and ur son everyday.

Anonymous said...

Jami - you are such an inspiration! Your strength and positive attitude through all of this amazes me!
You are all in our prayers!

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