Summer had a fever of 101.6 an hour or so ago, so I am not sure if that means we are in for another 48, but it might. :( She still has not pooped. Getting her to take her stool softener is still rough. I really wish she would just take it, but it seems like most of the time we end up in a stand off. Her refusing and me telling her she will take it. It can get pretty ugly and that upsets me. I wonder if this will ever get easier for her. I have tried explaining to her we have to do what the doctor says, but sometimes she still doesn't want to. She doesn't think the medicine is working because she still hasn't pooped. If she does not see immediate results when I tell her what a medicine is for, she assumes it isn't going to work so why take it. She is really smart, but of course not smarter than the docs prescribing the meds. I just wish they could figure out a way to get the poop out. They don't want to mess with her butt at all because oncology kids don't heal very well since their immune system is shot. So, the risk of going that route is too great. Tomorrow I am hoping to get with a Dr. to see if there is anything else we can try. They did another x-ray of her belly today, but we won't get the results until tomorrow because their is no pediatric radiologist on the weekends. In the meantime, the belly pain continues.
She is wanting to eat, but I think her mouth sores are hurting her....along with her belly. She will take a bite of something and then say, "My belly hurts." I also noticed her wince a little like she was in pain when she tried to chew up a frosted mini-wheat. :( Despite the new reward/sticker chart I made the other day, we are still not getting 4 swishes a day in. We are doing better though.
She is still on the shots because her numbers are still low. Today she had to have platelets because they were only 13,000. They wait until they are below 19,000 to them to her. I found out a normal person has 130,000-400,000. Thankfully, it is a painless process. Her hemoglobin was above 10, so no blood was needed. They usually wait until it drops below 8 to give her a transfusion.
We had a nice picnic lunch outside today despite the heat. Summer didn't eat much, but she did ask for a hot dog and cheese sticks. She tried both, but only ate a few bites.
This trip to the hospital has been no fun. She has rarely felt like playing and I have been down in the dumps myself. Where did the fun mommy go????
The last thing I wanted to mention is that her beautiful, long eyelashes are about half gone. She has been rubbing her eyes a lot again today. I'm not sure if the eyelashes are getting in them or what, but wet washrags are her friend.
Please continue to keep us both in your prayers. Pray that God will give us the strength to continue on fighting the good fight. There are lots of frustrating moments where I'm sure Summer and I both just want to throw our hands up in the air and give up, but that is not an option. We will beat this thing. We have to.
P.S. I finally did win at Spider Solitaire. Longest winning streak: 1 Longest losing streak: 32 :D
2 years ago
4 comments:
Jennifer your family is always in our prayers!!! I know that God will give you the strength to get through all of this. I can sympathize with ending up in a stand off with kids. I find myself doing that more than I would like to with my two and I always feel deflated afterwards. Stay strong!!
We've had to force the liquid BP med, three times a day. Somehow we've managed to get it so that he doesn't gargle and spit, and we just give it a bit at a time. He hates it but he gets over it. It goes against everything that I believe in as a mom to force him to take it (it seems relatively pleasant-flavored at least), but the other option is blood pressures that are through the roof and a kid who isn't even 2 yet having a stroke.
Tell Summer that David's mommy is way meaner than hers. ;)
Jennifer I am in continuous in prayer for you ad Summer. I am always talking about your precious girl to someone so they can pray also. Just hang in there. When it is finally over you will be glad you did.
Honey, it's normal that you're wearing down a bit. Despite the supermom status, we're still mere mortals. Don't forget that.
And don't feel guilty for it. You've been in the hospital for a long time and things haven't gone super well this time...so just hang in there. The worst is over.
I'm thinking of you guys.
XOXO
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