I asked the nurse tonight, so is this what it's supposed to be like when you're on chemo? She replied with a sigh, "yes, this is what it's supposed to be like."
Chelsea has been feeling awful all day. She woke up at 5am standing up crying and she was burning up again, but her fever wasn't quite to that 101.5 so I didn't even call the nurse in. When she woke up at 7am it was back down. I got her back to sleep until 9:30am. All day she's gone back and forth with her temp, flirting with 100 - 101 and then back down to 98. Her nurse today expected her to spike but she never did. Around lunchtime I couldn't calm her down, she was crying and laying on the floor, so we ordered some oxycodone for her pain. That seemed to help and she took a good 2 hour nap. We're just going to keep her on pain meds for a while now. She didn't eat well today and she has been drooling awful all day. I'm sure she has mucousitis, which is a term for sores that can be anywhere from your mouth to the other end of your intestinal track...yep, your bottom. Fortunately she's okay down there so far. I think hers are inside. I did see two small sores on her tongue which we treat with vancamiacin paste, but I don't think they are what's causing her all the distress. She was extra cranky this evening. She doesn't want me to hold her, but she doesn't want to play. She falls to the dirty floor in the middle of the hallway. It's hard to figure out what to do with her.
I've been pulling hair off of everything today. She's not losing it in patches, but everytime I turn around it seems she's got a handful of it, or there's a wad hanging from a tangle or it's stuck to her shirt. I'm really shocked she doesn't look more bald yet. I think it's coming though, she's thinning out pretty quickly this round. Maybe when we go home this time we'll have our head shaving party. Just in time for the cold weather!
When I brushed her teeth tonight she got so upset with me she did the "silent" scream and turned purple. I picked her up after I was done and she spit up a bit, and it was really thick and seemed to be her meds they just gave her, ... great. Then the nurse came to check on her b/c she was so hysterical. Chelsea reached out for her. She didn't want me, she wanted the nurse! I talked to her for a minute and reached back for Chels and she turned away and grasped the nurses arm again!!! What a stinker! I really think she's just in a lot of pain, she's tired, and she's all drugged up right now, so she doesn't really know what's going on. So I guess this is the side of cancer I never knew about. We had been so lucky so far, you never would have guessed she was going through chemo. Now my heart just hurts for her. I hate that there's not more I can do to calm her, she's just beside herself in pain.
Hello world!
3 years ago
4 comments:
Hi there we are from the Trisomy 21 board I do not get to post much due to kids,day care and school but Know Chelsea and your family are in our prayers. I am so sorry she has to all this hang in there praying you will be home soon.
joanie and Thomas
My heart is breaking for you and Chelsea right now. It must be hell to watch her suffer, know it is the medicine that is doing it, know that she needs the medicine, and not be able to do anything to make it better for her.
You have so much love, support and constant prayers surrounding you all. God will be with you as you face each new challenge. Remember what I told you before; I don't know where you both will find the strength to do what you have to do but I know it will be there when you need it.
What can we do for you right now? Say the word and it is yours.
Meanwhile, I will keep praying and thinking about you. We miss you!
I love the pictures. I almost didn't recognize Logan for a minute. His hair looks long or something. How is his cold? Once he gets better, let me know. Maybe we can come get him after school or something and go to the park.
Give that girl a hug for us! I'll call in the next day or so and check in.
Carey,
Parker has always gotten really angry at me when he has been in the hospital for surgeries, etc.
It took him weeks to totally forgive me after his trach.
Reed he still loves.
Me he will turn his back on, refuse to come to, etc and just give the general cold shoulder to.
I talked to a specialist in behaviors and she said that Mom is usually the one kids feel should be protecting them from the shots and surgeries, pain, etc.
They also know that Mom will love them no matter what kind stinkers they have been and so they tend to show their worst to their Mom.
Parker isn't one to reach out to a nurse, but he sure has snubbed me for Reed many a time up at PCMC.
It helped for me to understand a little of what was going on in Parker's mind. He and I have a really close relationship and the whole freezing me out was breaking my heart.
You don't know me (I came here from someone elses blog) but I want you to know my heart goes out to you and your daughter today and I will pray for you as you battle this dreadful disease -- May God bless you and may you feel his presence each day -- when the days are "good" and when they are almost more than you think you can
handle!
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