Better Day

Today was better for Chelsea. Apparently the antibiotics are helping her sores ... I think. She's not eating great, but I got a few bites down at each meal, so I'll take it. I think it's enough to keep her off of the feeding tube. The nutritionist told me today that she thought about it and decided if she did go on a food strike she would go to the feeding tube instead of the appetite stimulant b/c it would be mean to stimulate her appetite when she's in so much pain. I'm thinking we'll get through this though. Chelsea is still losing lots of hair, enough for a pony tail still, and it's just thinning, not really bald spots...yet.

Her blood cultures from her fever ended up growing an infection this morning. She has gram negative in one of her lines. The nurse said she was surprised b/c Chelsea was acting way too well for that kind of an infection. She said usually kids with gram negative are pretty much miserable and in bed all the time. Well, she was acting pretty puney Monday and Tuesday but was perking up today. That goes to show how tough this kiddo is! I missed her "window" for her nap today and she tried to skip it, but I made sure to get her down for a short one hour snooze before Daddy and Logan came up. The redid the cultures to see if the antibiotics are working or if they need to add another one. It looks like we'll be on antibiotics for at least 10 days as this is a pretty nasty infection that is in her blood now. They also drew her blood and found she'll need a blood transfusion. We also noticed on her labs that she is showing some mono's. Ask me what that means, and I can't exactly tell you, but what I do know, is there is a POSSIBILITY it means her counts are getting ready to come up. Do you remember what it means when counts go up? yep, we'll get to go home!!! It definately won't be until next week b/c they want to look at her infection more in depth Monday as it continues to grows out. Then if we do have an ANC next week, I'll have some persuading to do in order to convince them I can administer her IV antibiotics myself at home. As much as I've done with her lately, I feel like I could do just about anything, okay, so maybe not heart surgery, but you get the picture!

Logan and Ryan are here now and we had a delicious cafeteria dinner. Really looking forward to tomorrow's spread in the family room! Logan has been with me coloring while Daddy put Chelsea to bed. He said he can see she's acting like a different kid just since he saw her 3 days ago. She screamed through her teeth brushing and vanc paste (for mouth sores) and she fought her oral meds tonight. He said he got a little teary eyed rocking her to sleep. I'm glad it's not just me that this is effecting. I told him I know we're supposed to be strong, but it's really hard sometimes.

Now, for the drama of the day...my social worker told me today that we were in trouble with the Ronald McDonald house. They were on the verge of kicking us out for good...as in we can't return. Uh-oh. We kept our room from the weekend b/c we knew we would need it tonight for Ryan and LOgan. I was going to use the room for naps, showers, and food etc. the days he wasn't here...but...as you all know, Chelsea had other plans and it was impossible for me to leave. She's just been so sick, I couldn't leave her. That's why I'm here, is to be with her. So, they were able to tell the key hadn't been used for a couple of days and they peeked in our room and though we had abandoned it without checking out. Of course that would be really sad because you're supposed to clean your own room since it's a charity driven program. All of you that know me know that I wouldn't do that. I should have called, but I didn't think it was necessary b/c they never check up on you, they just usually leave you be and you check out whenever your done and pay your bill. So that's part one. Part two is apparently there was a note in the file that said I was rude upon check out at one of our stays at the house. I was shocked, as was the social worker. After she left, I was super emotional and laid around crying trying to figure out what they were talking about. The only thing I can come up with is maybe someone had mistaken "assertive" for "rude"??? I'll admit, I addressed a couple of issues while we stayed there. There was the window without a screen issue, obviously a serious danger with my curious 4-year old...have you heard about how many kids fall out of windows every year? It was particularly an issue b/c we were forced to keep the window open b/c the heat was on and it was upwards of 80 degrees in the house that weekend. Then there was this past weekend when the temp outside was below freezing and the heater in the house was broken. I didn't complain though...I just couldn't figure out what they meant. It could have been that I was tired one day that I was there, you know, I have been living in the hospital for weeks on end with my toddler who is fighting cancer!!! In my opinion it's almost expected that a parent would be on edge in such a situation. In conclusion, I am really stumped as when I may have been mistaken for rude. I am absolutely not trying to speak negatively as this is a great charity and I hope that if you support them you will continue to do so. I just needed to get it off my chest. Ryan called and took care of it, they said we could continue to stay there. He said he wants to talk to them when he gets there tonight, I think he's pretty upset about the whole situation. I'm so touched as he's usually a pretty laid back person, but he knows me and he knows I wouldn't have been rude to them. He's also experiencing the exact same stress as I am, so he's hoping to get a little more understanding from them. Okay, sweet dreams for now and Happy Thanksgiving!