Friday, August 28, 2009

Out come the blue gowns

The tests from Summer's puss came back and it is the resistant staph. Which doesn't mean too much more than it did otherwise. Only that when people come in the room now they are wearing blue gowns.....as of today. Never mind the past four days we have been here with no gowns. It is crazy to me how they can suspect something but not take any precautions until it is confirmed. Hilarious really!!! And the nurses keep telling me the hospital is probably the safest place for Summer to be.....yeah right. I do know it is best for her knowing she needs to be on IV antibiotics until her white counts are up to at least 500, but otherwise I think there are a lot more germs here than at home. Her white count was .6 today which is an ANC of about 60 they said. Yesterday, I thought they said her ANC was 120 so I guess it dropped. Your white cells are the ones that attack infections so I guess they are being used up to attack the two spots of cellulitis (along with the antibiotics). The Dr. still says we might be out before the weekend, but we will see. She is still on the Neupogen shots (17 so far this cycle). In a perfect world, cycle #7 would've started today but her numbers are just taking a long time to recover. Her platelets were 30,000 today, as opposed to 60,000 yesterday. That is low, but not too low so they aren't giving her any today. They are probably waiting to see what they will be tomorrow to see if they go up or down.
The doctors did find the heart protectant which is good and bad. It may protect her heart some, but it also can cause cancer itself and is not good for her. The doctors at our clinic all seem to agree that the Doxyrubicin should be given (at least some of the dosage), but we are still not convinced. Clint is worried Summer will always have heart problems and never be able to do things that require a lot of physical exertion. My mom also thinks it might be better to skip it rather than put Summer in any more danger. I'm not sure what I think, but I do want to keep my daughter and in the best possible shape I can. So, we will wait to see what the Muga scan shows next Friday. I doubt we will get the results that day though. Who knows? We might because I think they are wanting to start cycle #7 the day after Labor day which would be the next working day.

Summer seems to be feeling even better today. She actually told me this morning that she was ready to go home. That says a lot for her because she usually dreads the port deaccessing so much she wants to stay forever. She has watched her new movies over and over the past two days. She just can't get enough Caillou or Barney. She has been coloring too which is more than she has done all week. Mostly she has just been watching cartoons or sleeping and sucking her thumb into a state of grossness. She does give it "breaks" though. LOL They haven't been long enough to take away the soggy skin look though. It is pretty funky.


P.S. Not to freak anyone out, but stock up on Theraflu NOW because I heard there was going to be a shortage this fall due to swine flu. That is what the Dr. will tell you to take when you see the first symptoms of flu anyways. Of course, you may not have an immune compromised child, but if you do have a child please be careful in where you go with them because the germs are out there and they are much more at risk than us as adults. I'm also trying to get enough food in my house where I won't have to go out for the next few months....at least not much. I think I am banning myself from restaurants, at least with Summer. Maybe altogether, if I can handle it. I am also going to try to shower and sanitize after I go places so as not to carry germs back into my house. Wish me luck because I am not good at being a homebody!

5 comments:

LRO said...

I am right there with you girl! Now, anytime I go outside, or anywhere, I wash my hands ASAP! Remember, I am here if you need me, I am just a phone call away! We will be in Knoxville tomorrow until around 5pm, but after that and on Sunday I am free. Everytime I leave you a comment, I want to break into song, singing, "Friends are Friends Forever :) Take care of that cutie pie of yours and yourself!

Stephanie said...

Hey at least when you're stuck at home you still have blogging and we can make our lives interesting this winter that way :) I'll be here with ya!

Hope her counts go up quickly so she can head home..I agree that home is probably more germ free than the hospital!

I'll be praying for the decision about her meds...I can't imagine how much that is weighing on your heart right now...I know you all will make the right decision for Summer though....you always do! You're an awesome mommy!

Bridgett said...

Oh no. :(

So, I have to ask...what all have they told you about resistant staph or MRSA?

I will tell you this...most of the cases of MRSA originate in the hospitals. I know this because I used to see it all the time.

MRSA is highly contagious so just be very careful, okay?

the mol said...

I flipped a fit about the blue gowns and how they only start using them when they feel like THEY are in danger instead of taking the precautions to protect our children.

David's first chemo regimen, you know, the one that still allowed the tumor to regrow, had Dox on it. He got 4 doses, I believe. His heart seems fine on all the tests. His kidney function is a hot mess.

Some of the parents on the Wilms listserv have said that either heart issues or BP/kidney issues resolve themselves at least partially once children are off treatment. Let's hope that for both of our little ones.

Stephycce said...

Oh man yeah their really worried about the flu and everything this year...Might be best to build us all bubbles to stay in for the winter.

Stephy