Charlie has spiked another fever of 38.4 C (101.1 F). The nurse gave him Tylenol and is stuffing ice packs all around him. As you can imagine he is very upset about this. His heartrate remains elevated at 184 bpm. He just recieved morphine to help calm him down again. Since he woke up, he has dumped/drained a lot of CSF (28 cc/h20 in less than an hour). I recieved some advice from a visitor tonight that I am too nice and need to be a little more assertive to facilitate Chalie's care. His MRI was completed at 11:30 am this morning and ordered in sort of an emergent basis to assess a possible reason for his seizures. From working at a hospital I know the results are in the computer usually within an hour or two and we still have heard nothing almost 12 hours later. I asked if I could just have the report and the nurse said it is policy to have a Dr. tell the results prior to giving a copy of the report. I requested for the nurse to call any doctor that would be able to just read the report to me. The resident said she can give me results but won't be able to answer many questions about it. So she will be coming in a couple hours after she admits some patients. "I said that's fine, I'll be here." I really do need to work on this assertive stuff.
If anyone wants to check back at 1:00 AM I'll still be waiting
----Angel
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8 comments:
More Power to you, Angel... keep at 'em... you probably know as much as they do and you know CCC far better than they do. Bless you and that sweet baby... I will probably be awake, too... Check with you later.. Love ya, Jill B
Angel,
You can ask Andrea about the results from becoming "aggressive & pro-active!!" A necessary evil,
but as someone told Andrea, you are your child's best advocate. Ask Andrea about the night Jada was taken down to morphine...none of us will ever forget that night! YOU GO GIRL!!
Love, Dawny
well, boo. here's the deal. i've worked hospitality (not hospital, maybe a little different?!..) for like 10 years. and i am always willing to work harder for the nice people, but i always work the very hardest for my "squeaky" nice people. you don't have to be a horrifying person, but you do have to let them know that you're going to get the answers you want and the care you need for your baby, thank you. a fine line to walk i understand, but you have good balance...
Angel-
I just wanted you to know you are one of the most amazing people I know. I have always admired you and your kindness to others ever since we were little girls. I am constantly thinking about and praying for your family. (I too am obsessed with your blog)
Love you, Sam
Perhaps I'll still be stalking you around 1 am, but if I'm not, I'm sure Meghan will be. You can be sweettough (that's my new word for you), you deserve answers. Hopefully no answer is a good answer though. I'm going to start my prayer of the night for Char and you....even though I always have a prayer in my heart :) (kind of cheesy)
Ang, Meghan has good advice. Keep at them, you need the information, they can give it to you. "I'm sorry to keep bothering you, but I will until you get me the info I need and you have" sort of thing. Tell them Rob will just ask them in 500 words or more if they don't do it for you.
And, don't do posts about "no updates", it seems to set Charlie off a bit...
I hope you get the answers, whether or not they are the ones for which you are looking. We are praying for you. Have a good night CCC! Sleep well!
I just want to say first...GO UTES...ok I'm done with that!
I came across your blog through discovering Jada Rose's Blog.
Can I just say that you guys are AMAZING parents. I so admire your strength and love your sweet little guy.
I know that we are all so incredibly lucky to be blessed with this amazing children. Keep up the good work and I know as a Mother that your little boy appreciates every moment with you!
take care!
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