It's 12:07 am in Room 261. Mandy and I are both exhausted. She JUST fell asleep. Like minutes ago. Hospitals are not terribly conducive to rest and relaxation.
This is where things stand today, tonight, this morning....whatever.
I have the CT report in my sweaty little palm. It reads
"Impressions:
1. No acute intracranial process identified.
2. No evidence of intracranial hemorrhage.
3. In this patient with history of neurofibromatosis, change of myelin vacuolization part as read in correlation with prior MRI of 06/25/2009.
4. No convincing new abnormalities seen.
Findings:
Computed tomography of the head was preformed without the administration of intravenous contrast material.
In this patient with history of neurofibrmatosis, optic pathway glioma and extensive myelin vacuolization as seen on prior MRI's, the most conspicuous CT signal abnormalities are seen with low attenuation identified bilaterally medial basal ganglia/globus pallidus.
Left parietal lesion only faintly visualized on this CT study.
There is no evidence of acute intracranial hemorrhage.
There is no shift of the midline structure."
We had the MRI today. And though I looked at the disc and have my amateur radiologist opinion, I will wait until the actual professional report to post those findings. She is hooked up to the EEG now, and will remain so for a while, at least 24 hours, possibly longer.
Counts were back to to normal for her today ANC 1100, WBC 3.36, platelets 292. Which makes that whole bizarre increase yesterday even more bizarre.
Hopefully, we will have a better idea tomorrow. I remain terrified that it will be a repeat of 2005 and we won't know what's going on. But, I am equally terrified that they will diagnose something that would be equally or even more scary.
I want to just take a second to throw out some thank yous. It truly does take a village to raise a child, but lemme tell ya, you really have to lean hard on your village in times like this. And boy oh boy, does our village step up.
Charitta and family who are housing and caring for Alannah, the Coopers and now Anne who are housing and caring for Zachary. Jane and Greg and gang who are housing and caring for the dogs. Kim and Mary Ann who went all kinds of out of their way today to make sure that Alannah didn't miss seating auditions at youth orchestra tonight. Amanda who came to visit bearing a mocha for Momma and a Webkinz and sticker book for Mandy. Angela who came to visit bearing gifts and food and laughs. Kate who, with the help of several Facebook friends came and dropped off a couple of perfect mochas for Momma, a pizza for a starving Mandy and a ton of pastries from Starbucks. A ton of texts and phone calls and messages letting us know that so many people are praying for and loving Mandy, and all of us.
Mandy summed it up when she said, after being NPO(without food or drink) all day long and a sedated MRI and while she was hooked up to the EEG machine, "You know, it was a pretty good day today for being in the hospital."
We are blessed and very thankful to be surrounded by the most amazing friends and neighbors and adoptive family. We love you all.
I am going to try to nap. Will update again tomorrow when I get counts and MRI reports.
Love to all~
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4 comments:
Hello. I am Angel Toni's friend, Cindy. She passed on your blog for me to follow. I am grateful you are surrounded by friends who show you they care. You go Mandy--I think your comment about the day was a good way to sum up how little things like pastries and pizza and mochas (to keep momma happy) can turn a cruddy hospital day completely around :) My son's had a lot of EEGs so our thoughts and prayers are with you as we know what you are going through in that hospital room. peace and love <3 Cindy
Hey Natalie,
That report doesn't look too bad, of course is that a good sign or bad? Maybe, it was just something freaky that happened. Tyler, my oldest, had a seizure last year around Christmas, we did the 24 hour eeg and it came back fine. Our Neuro thinks it might have just been a freak thing, growing pain kinda thing. Who knows, praying Mandy's episode was just a freak thing and it is done and over with.( Of course, I still wonder about Tyler and watched him like a hawk for the first 3-4 months after and still worry some now but, I try to let it go) Hoping you get some anwsers, some sleep, some food and some peace today. I really thought about coming up to visit you yesterday, I know how lonely hospitals can be, but I just wasn't sure if I should have (I outta know better)! Anyway, prayin' for a great day!
Hope you get a good results both in the MRI and the EEG.
Hugs,
I'm so sorry to see all that is going on with Miss Mandy. We are sending prayers and hoping this is a perfectly normal explanation for all of this and it is not something crappy.
Hugs of love, Andrea Cook
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