It might be that the Periactin is working. Maybe. Ellie has had a slightly elevated temp on and off for the last three days. It has ranged from 99.4 to 100.6. She has not vomited. She was given motrin and she is not totally herself in that she has been tired and has dark circles under her eyes and is very pale. I need to get a script for an oximeter because I want to know better how much pain she is in. My rational is that if her heart rate is elevated then she probably has some pain. Also, she is pale. One time when she had a seizure she was pale but flushed at the same time and the O2 saturation in her blood as taken by the EMTs was 78. So, I kinda want to know how she is doing when this is going on. It's hard though. Instead of a week between not it's a couple of days. If this becomes everyday that is an untenable situation.
Picture description: Ellie at her school's jubilee. She signed "I love you" to Santa.
7 comments:
Oh poor baby! Of course she is still incredibly beautiful but I can see what you're talking about with the pallor and the dark circles (and I'm sure these were taken when she was feeling pretty good; as someone who's used to looking at little kids in the context of "how healthy are you today?" thanks to my little one with the g-tube and other assorted issues I can see that she's just not her usual vibrant little self though). The oximeter idea sounds like a good one; in fact if one of your docs would write for it I kind of wonder if it wouldn't be a good idea to get an 02 tank for her bedroom. Not so much for emergency use (although it could come in handy for that too) but because...well this is total conjecture on my part but I've had doctors treat me for migraine-migraines with oxygen before ("migraine-migraines" as opposed to the abdominal kind, I mean) and it really does help. Maybe it would also help with the abdominal kind? Since some temporary supplemental blow-by certainly isn't going to hurt anything it's worth a shot in my book! I really hope for all of your sake that someone figures this out, and soon...I know what it's like to have a big question mark like this in your child's medical treatment and...dang, y'know? I've been sitting here mentally reviewing what you've shared of Ellie's medical history (disclaimer: I am not a medical professional, just a special-needs mama with an M.D. in Google-ology) and I don't have any brilliant ideas as to what is going on with her either.
How are YOU doing? Personally I think my mental health has been at its worst during the times when my most medically complex child has been at his most mysterious. Even though intellectually I knew that I was not mySELF a medical expert and that I was taking him to the best ones at our disposal I always kind of felt guilty because...well I don't know, I guess because the mama is supposed to have all the answers? How are YOU holding up? My thoughts are with you and Dave as well as Ellie, and I hope the three of you have a happy holiday.
Ellie is beautiful.
I love that the she is signing to Santa.
We have come off of a year of Dustin being medically fragile and his situation was digestive with internal bleeding, no cause could be found.
I imagine that Ellie's dr's are on top of her hemoglobin counts. When his levels were low he would also run a temp, suggestive of small bowel partial obstructions. Not meaning to give you something else to worry about, just that
It is all such a mystery at times. The oximeter a very good idea. We also check heartrate for pain indication, hydration issues, and an understanding re: hemoglobin dips. Anne
I'm sorry that Ellie is not back to herself during this holiday season. I so hope she is feeling better.
Can she point to a picture pain scale to give you an idea of her pain level? The idea of anyone in pain, makes me upset, but for a little one, well, that is truly awful. I remember when mine were not able to communicate their issues.
Here's hoping for improvements.
SO sorry to hear that Elli is not feeling well. She sure looks pretty, though.
That is so sweet that she signed I love you to Santa.
Elizabeth lives with a great deal of pain, she often is up at night writhing with pain in her knees. She has been excessively busy with her dystonic movements lately and after being prodded she told me 'there are a thousand owies biting my knees'. We use heat, motrin and volatren gel to sooth her pain. Being so uncomfortable and sleepless is bound to give to run their bodies down, Elizabeth's eyes are black right now.
I hope Ellie can begin to feel better.
Thanks to everyone for the kind thoughts and helpful comments.
BusyLizzy's Mom - I am so sorry to hear that she lives with that much pain. It is agonizing to see them in pain. I worry so much about the long term effects of that. I know Ellie gets knee pain from her afo's - not sure your Elizabeth has them. A thousand owies sounds pretty bad. It's hard.
Sending you and her lots of love and hugs.
I kind of wonder if it wouldn't be a good idea to get an 02 tank for her bedroom. Not so much for emergency use .
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