I wish I could say things were going better, but unfortunately they are not. When Maggie wasn't sleeping on me today, she was crying. This morning she was especially limp and listless, struggling to keep her head up. I don't know if this is due to the steroids or the meds we gave her to sleep last night. We ended up giving her Benedryl around 11:00 and then Ativan around 3:00. Maggie cried much of the night in between moments of sleep.
I just don't understand why steroids have to be so rough on her. I understand that they are difficult for all children, but I am sure that other kids are not constantly crying throughout the day in misery or pain. Maggie cried in pain much of the afternoon into the night last night, but I believe this pain was due to a bellyache in which was relieved before she went to sleep. Today much of her crying consists of discomfort or overall feeling of crumminess.
Maggie hasn't eaten hardly anything since yesterday for lunch. I managed to get her to eat some jello today and after coaxing her, she did drink some chocolate milk. Thankfully we are keeping her hydrated, but that's about it. She began keeping her mouth open this evening, which resulted in some drooling which makes us wonder if she has mouth sores, teething, or jaw pain from the Vincristine chemo she received on Monday. There should be no reason why she would have mouth sores as she hasn't received any chemo that would cause this and her counts are high enough to combat anything. Which makes us think it would be the latter.
Regardless, our inability to communicate with Maggie is very frustrating in that we are unable to help her. We can't quite remember the last time that Maggie responded this way to steroids, but we pray that it will subside as the effects wear off. I gave Maggie her last dose of steroids (for this month) tonight, so hopefully we'll begin to see signs of the "old" Maggie tomorrow night or Sunday.
Though we don't often see Maggie smile, I can't wait to see her smile, listen to her talk, and even tell us "no, no way, nope." Please pray for Maggie especially during this time.
3 comments:
Praying for Maggie, of course, but for you and Andy too. You have so much patient endurance and love - God has truly gifted you in this way for this time.
Debbie
I'm glad it's Saturday so that Andy can be there to help. Andy, your internship work is so important for the long-term benefit of your family, but I know it's difficult leaving Whitney and Maggie each morning.
My thoughts and prayers are with all three of you many times every day.
Love.
Great Aunt Phyllis
Been checking on here and of course, praying for Maggie (and you two). I am so sad that this week of steroids have been extremely hard for her. Glad today was her last day.
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