Martha is my favorite! :p That is the cartoon Summer is watching right now. What's so great about a talking dog you might say? Well, this dog teaches vocabulary words. Like today, add and subtract. It is pretty cool and overall bearable to sit through once or twice a week. For me, that is. Summer could watch it everyday. She has really been missing "The Big Comfy Couch" and I need to go online and see if I can find it. I don't really like surfing the web though. There are just TOO many things on it and it can suck you in for hours. With Summer, I just don't have hours to sit at a computer. We are talking minutes people. LOL
We are off to the clinic this morning for a finger prick and count check. Hopefully, she will not need blood or platelets and her white blood count will be above 1. It has been around 0 or 0.2 for over a week, the highest it got was .4.
She looks better than she did yesterday and is actually sitting up watching the cartoon instead of laying down in the fetal position. She often sleeps in that position now.
Ok, so I don't know what I've started, but last night I tried to sleep in my bed. Let me just say that I woke up in Summer's room. She begged and pleaded for me to sleep "all night" in her bed. I didn't want to start something and never be able to sleep in my bed again so I didn't fully agree. I told her I would stay in there some. So, every time she woke up alone, I was beckoned. "Mommy, I need you." or "M-O-M-M-Y!"....boo-hoo-hoo. When I finally gave up and decided to stay in there (which was after Daddy closed our door and woke her up, I'm sure), she seemed to sleep for longer periods and only stirred instead of fully waking and sitting up in bed like before. BTW - She did complain of belly pain several times during the night. :(
She still did not want to eat or drink this morning, so I gave her a Zophran. Then I fixed her some apple juice. Well, actually I just grabbed the cup from yesterday from the fridge. It was half-full. When I set it down, Summer started complaining there wasn't enough in it. I was thinking she just tricked herself into drinking more apple juice, but went along with her desire for more juice. She just asked me if she had to drink it all, and I told her to drink it to the 3. Then she said, "I think I can drink it all." Oh me. It looks like it is going to be an interesting day. I really hope we are out of the clinic before noon. If her counts are up, there is a trip to Chuck E Cheese in our future!!!
*********UPDATE*********
Her counts are still at zero. Her platelets were only 11,000 so she is getting 250 ml of them right now. That is the second time this week she has gotten that much. Looks like chemo will be delayed until her counts come back up. The doctor also mentioned we might need to look into other feeding methods aka feeding tube / g tube. Boo! Let's hope she puts some weight back on this weekend. As the cycles progress, it is normal for it to take longer to come back up because the drugs have a cumulative effect. Please pray she is able to get back up to around 32 or 33 pounds. Today she was at 29.6 pounds which altogether isn't too bad. She took all her meds yesterday and today so we are back on track with them (Neupogen shot, Zyrtec, Zantac, Miralax, Zophran, probiotics). Gotta run it is almost time to deaccess the port.... :( The best of the day is still ahead. Not sure what we will do, but it won't be Chuck E Cheese.
5 years ago
9 comments:
I think right now she's just feeling so lousy, she feels comforted having her mommy around. Hopefully once she's feeling better, you'll notice less neediness.
I know you're giving her probiotics...have you thought of aloe juice (it's completely tasteless if you get the George's brand) or digestive enzymes?
I keep thinking anti-fungals might be useful as well because I'm sure all the toxic chemicals she's been getting has wiped out her GI 'good' bacteria. The first thing to start growing back, if not replaced with the good stuff, is yeast.
Hope you get to go to Chuck E. Cheese today!
http://www.ovguide.com/tv/the_big_comfy_couch.htm
Here's a guide of where to find episodes of The Big Comfy Couch online. The best links are usually to Youtube where there's 3 parts of each episode.
Hopefully that helps and that her counts raise really soon!
You are all in my prayers!
Chuck
Praying for a good weekend for you all. Praying that Summer starts to eat.
I wish I had some useful advice, I just hate hearing how bad she's feeling through all of this. I just hate that she even has to deal with this. I hope she is able to start eating so she doesn't have to get a feeding tube.
Praying for your sweet girl. And you, because I can only imagine how draining all of this is. I know I've said this before, but you really are a pretty awesome mommy with how well you are getting Summer through this.
Good morning Summer, Praying for your counts to go up. Have a good weekend sweetie. :o)
God bless
Debbie/Angel_Wings
Have they tried some of those high calorie juice drinks? The nutritional supplement, made by the formula people. Protein shakes for kids. They sent some for David, who is normally a great eater but wasn't doing as well after his last stay. One large juice box is 250 calories.
Hopefully her counts come back up soon. And that these platelets do the trick.
David knows all his letters and numbers. It's amazing what happens when they have all this "free" time in the hospital. We love Word World. And Sessme Street of course. Complete with Elmo addiction.
Hi, Jenn - I thought I would check in and see how you all are doing. I think you are exactly the mommy I would want if I were in Summer's place. You are to be greatly commended for all your dedication and perseverence - I know it isn't an easy thing. Tell Summer I am still praying for her, and think about her every day. Linda
Aww hope she gets eating!!
Crossing my fingers!
Stephy
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