I think it's like a child being diagnosed with diabetes. All of a sudden the parent has to take their blood sugar all of the time and find all these new ways to do things and adjust and readjust their insulin and sugars and things to stay in balance.
So it's virtually the same now with her body temps.
It is just plain hard. It is difficult for me to talk about things until I have come to a mutually agreeable acceptance of the issue at hand. So until me and Ellie's temperature worked out our differences it is hard for me to talk about it openly. So I'm sorry if I've blown you off or seemed stand-offish if you have asked me how Ellie is doing. I'm just trying to accept it and understand it.
I know that probably doesn't make any sense. But that's the way my brain works. It's like when I was pregnant with Ellie and found out about her diagnosis and prognosis. I sent out a fairly rude email to family telling them what we knew and then said I didn't want to talk about it. After a few days or a week or so (I don't remember) when I had come to grips with it myself...then I could talk about it with others.
So here's where we stand...I don't want to have to take her temp every 2 hours. She doesn't want me to take her temp every 2 hours. But I don't know what else to do.
She has probably been this unstable for a while...but we don't regularly check her temp all of the time.
I'm hoping that a lot of the really bad instabilities were from starting the onfi. And now that she is getting more used to it...they might be a little more controlled. But only time will tell.
For now we take her temp before we leave the house, when we arrive where we are going, before bath, after bath and every 2 hours (while awake).
She probably has instabilities at night...but you know what? You can only do so much. We just check it before bed and first thing in the morning and make adjustments from there. If it means she has to be late to school because we have to warm her up...then that's what we have to do.
I do think she is getting a little more stable. This week she has been hanging out in the 94-95 F range (instead of 93 F like she was last week). She has still gotten into the 92 F range a few times and one night she was up to 97.9F.
So what I'm saying is...sorry I haven't been updating her blog...my brain has been processing. I think I have come to grips with everything now and think that I am in a mental state of mind to not snap at people or give one word answers anymore when asking about Ellie.
She is doing quite well. She has been going to school. They are just having to check her temp the same as we do at home.
Jason and I do think her extreme sleepiness is caused from the interaction between the trazodone (sleeping pill that she has taken for at least 5 years) and the onfi (new seizure med). So we took her off the sleeping pill and were giving her melatonin instead. The melatonin was not working (but we were only giving a very small dose--1 mg)
We met with Dr. Murphy (Special Care Clinic-Developmental Pediatrician) earlier this week. She suggested we give her a higher dose of melatonin(3 mg) and the ritalin every morning (whether sleepy or not) for 2 weeks straight. This will help her get on a good wake/sleep cycle. That sounded like a good plan. So we tried it. Also we got the therapeutic light box. So she has been using that in the morning to help her know that it is morning. I think it is really good. I think that every deaf-blind child should have one. (Kids with dual sensory impairment have a hard time with day and night and sleep/wake cycles). I really think it is helping.
The 3 mg of melatonin did nothing. So last night we added an 1/8 of a trazodone (6.25 mg) (teeny tiny dose) and it did the trick. The hard part is cutting the trazodone into eighths. And she was awake this morning (before giving her the ritalin). So I think that might be a good sleeping pill plan. I think I asked the pharmacist if the trazodone came in a smaller dose and he said no...but I'll have to double check.
Dr. Murphy also suggested that since the onfi is working so well on her spacticity (tight muscles) that we could think about lowering her baclofen pump dose. That sounds good to me. But I don't want to make too many changes at once for fear of not pinpointing effects and side-effects etc...
So we will look at doing that later. We've got to get through the provera (the med to cause the lining in her uterus to slough off if you catch my drift). Possibly raise the onfi (she is still having seizures and I think she like the higher dose---she was smilier). Then start the thyroid replacement. Then think about lowering the baclofen pump dose.
I realize the thyroid replacement could also help her temperature issues...but we really have to do one thing at a time.
Her new hypothermia thermometers came. Yea! Both the ear and rectal one will go down to 78 F. That is AWESOME! Ones you buy in the store only go down to 92 for ear and 90 for rectal. (Approximately). The hypothermia ear one does use probe covers (Boo) but PCMC reuses their covers (on the same patient) so I will too. One thing I really really like about it is that it is fast. All other ear ones I have used if you take a temp and then want to take another temp you have to eject the cover, put it back on, and/or then wait for a little symbol to indicate that the thermometer is ready to take another temp. With this one you do not have to eject the cover and you do not have to wait for a symbol to appear...it is ready to go immediately. It also uses regular batteries. I posted links to the hypothermia thermometers on amazon in an earlier post.
We also got her portable fingertip pulse ox. It seems fine. It wouldn't be good for long term monitoring #1) because it doesn't beep if her O2 or heartrate go low or high #2) it would eat up batteries. But for spot checking...it is tiny and we can have it with her all of the time. So it's great.
I did purchase an ear one (for anyone else out there having similar issues) at Babies R Us that will go down to 90 F. (That's lower than any other ear one I have found at local stores). It was $40...but they were nice and gave me 20% off. It was a Red Cross one made by The First Years.
http://www.toysrus.com/product/index.jsp?productId=2449556 It got really bad reviews on the babies R Us website...but I like it. I compared it to rectal and it is only .3 higher than rectal. It doesn't use probe covers and it uses regular batteries (not button cells). I only bought this as a temporary one until my hypothermia one came in. If I was going to buy one...I would buy the hypothermia one (if having similar issues).
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