She might be getting some skin breakdown so I'm going to call the hospice nurse and see about getting egg crate foam to help prevent it.
Oh, and for those of you who were wondering, I fired the infusion nurse. I didn't get her fired from her job, I just made sure that she doesn't come out here again. I hated to do it but the hospice nurse said that it needed to be done so SHE called the infusion company. yay! I didn't have to be the bad guy 'cuz I hate that - but on the other hand, it's my job to make sure that my daughter is as comfortable as possible and she sure doesn't need to go though getting her port change twice every time the nurse does it. It's not just the needle poke either, it's taking the tape off the old site that is very irritating. Poor kiddo. But, as always, she's a champion! The infusion nurse won't be out until Mon or Tues. I requested Tues so hopefully that'll be when they come.
Jessica about knocked me over when the Disney channel was advertising a new show that is going to air in a week and Jess said, "I'll probably be dead by then". *gasp!* I didn't even notice what was on tv since I was changing her at the time (and most likely administering the anti-nausea suppository - and yes, that's how she got the tylenol - she's such a trooper!). I told her that she will be able to watch anything she wants any time she wants in heaven. She then asked me if she would be able to watch scary movies. huh? I never thought she would even want to watch scary movies but I keep telling her that there's no fear in heaven - that there's nothing to be afraid of so I guess she got to thinking that she won't be too scared to watch scary movies. LOL The aide who was here said, (before I could) that she didn't think there would even be scary movies in heaven. I agreed. But I reiterated that there will be a lot of fun things to do in heaven. Later in the evening that same ad came on the Disney channel and Jessica, again, said, "I'll probably be dead by then." What do I say? So I just asked her if that was the commercial that was on earlier when she had said that and she said yes. I asked her if she was interested in watching that new show anyway and she said, "not really." I wonder what the big deal was and her feeling the need to tell me that she won't be around to see it? And she said it so bluntly - but that's Miss Jess. Blunt. When she was little she would say, "Something smells stinks" if I happened to have bad breath and she smelled it. haha! It was last Saturday that she told us all good bye and told both Brandon and Austin "I might die tonight". She seemed disappointed that she was still around Sunday when she woke up.
My sister's birthday is on Sunday and my birthday is on Monday. I've told Jess several times not to wait for my birthday to go to heaven and that I would be sad if she died on my birthday or Aunt Karen's birthday - unless that's when the Lord wants her to go. I'm going to try not to worry about it. In my book I already celebrated my birthday. I'm also trying to think of Jessica's impending death as a birth of sorts into the Spirit world - one more step towards her eternal progression. I don't kid myself - I know I will miss her - desperately at times - but love her enough to want what is best for her and living like this isn't living. She has also been in so much pain for so long... I know in my heart that she will be so much happier in heaven and I tell her that often.
I'm going to try to get some sleep since she has dozed off. She gave me hugs and kisses for all of you so *muah!*
Nancy Taylor Jensen was up with Jess most of the night. I went to bed good and tired and instead of going to sleep started to cry. Danggit. I did finally go to sleep and slept like a rock. I'm still very tired and emotional. I love my "baby girl" and am going to miss so much.