I thought I'd update you to let you know how things are going. Maggie is handling the feeding tube quite well. The first day she cried whenever she touched her face or looked at herself in the mirror, however, she is doing much better. We have some comfort in knowing that she's getting nourished better while this feeding tube is in. We'll see Thursday if she's gained any weight. She still doesn't like us to touch her tubing, but this is the norm for her. When she first had her broviac, it took several weeks before she didn't get upset when her tubes were touched. Now, it seems to be the standard for her to have tubes hanging outside of her body.
Many have asked how our sleep is going, especially since she is getting nourishment at night. Unfortunately, it isn't getting any better. Actually, in some regards, it's getting worse. Maggie still wakes up hourly to be nursed back to sleep. With more food in her belly, her bed-soiling poops are more frequent. The last two nights, our cleanups were substantial enough that Maggie woke thoroughly while we tried to get her bed put together. Then it took 1.5 hours plus to get her back to sleep (lots of laps walked around our living area).
Our efforts to try an alternate way to fall back asleep also stumbled last night. Andy cuddled her to try to calm her to sleep but she screamed and swung her restraint covered arms at him trying to push away (they are weapons that can inflict some harm!). Whitney finally came to try to calm her when she heard Maggie coughing; just in time to get covered with vomit.
We're going to keep trying and are being more conscious to repeat bedtimes and nap times. Hopefully this will help. She at least is getting to bed earlier.
Maggie is in a pretty decent mood, so that is nice to see. We are going in to see the doctor on Thursday and may get more chemo--depending on counts and liver enzymes. We're also going to try to get closer to figuring out Maggie's persistent, explosive diarrhea (more adjectives would be warranted, but I'll spare you the detail). I think it's been several months now and it's no fun. I read in our childhood leukemia handbook this morning that sometimes this accompanies chemo and once chemo is over, the digestive system returns to normal. So, if that's the case, only 15 more months to go. We're also going to ask for a food allergy test.
We will still welcome prayers for patience, progress (sleeping, eating), and continued remission. Thanks.
4 comments:
Hi Andy and Whitney,
I am so sorry you guys are still not getting any sleep. I know you have to be like zombies. I'm sure you've tried this but just in case ... try layering the bedding. Plastic waterproof mattress cover, sheet, waterproof mattress cover, sheet...then after you clean her up you can pull a layer off. Just an idea.
Whitney I miss seeing you so much. Just know that we are all rooting for you guys.
Jess
Jess's idea sounds wonderful and very practical! Your own ideas for dealing with things sound creative and helpful! I think the routines help, as you've already noticed about the various tubes. I actually hope the food allergy tests are done and find something that would help explain some of your difficulties because that would lead to some relief.
Prayers for you all are always being said.
Debbie M.
I hang on to comments like, "Maggie is handling the feeding tube quite well" and "Maggie is in a pretty decent mood"--- when the tubes, sleeping problems, diarrhea aren't getting in her way, I assume.
And I have the positive thought that if she can handle all of this, there's not a lot more that life can bring down the road that will turn her around.
I know you are exhausted, Andy and Whitney. But these good moments must remind you of what a strong fighting spirit you have here in little Maggie. Which I hope gives you more energy to continue the along fight with her.
You three are my heroes!
Love and prayers, Great Aunt Phyllis
I so appreciate your blog as it gives some guidance to the prayers I continue to say for you daily. Your strength is touching others deeply. I am thankful that Maggie is adjusting to the feeding tube and I am earnestly praying that rest will come more frequent for all of you soon. Shelly
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