I'm Home!
First of all, thank you so much for all the prayers, and for the tremendous support to my family. I picked the exact busiest week of the whole year for us and you all stepped up amazingly.
The weird-brain experience was extremely interesting for me, and staying in the hospital was fun once I realized it was all real. I remember everything in detail, but couldn't understand anything or make even the tiniest decision, like closing my mouth on a forkful of food offered by my very patient father (you'd be surprised how many decisions we make in a day). It's hard to describe what went wrong. One thing is that it seemed the opposites would flip back and forth, like up/down, back/front, hot/cold, loud/quiet, letters/numbers, etc. I was also saying aloud absolutely everything I thought and I could spell things backwards like nobody's business. Once a doctor asked what my birth date was, not expecting an answer as I hadn't been able to handle questions of any sort, and I immediately said, "zero zero zero two zero one H-C-R-A-M".
The doctors worked hard to look into all the possibilities they could before they let me go, which they did at 1:30 this afternoon. They still have no inkling of what happened or why I got better. I have my own opinion about why I got so better so fast, and it has to do with all of you and a really big God that has been baffling doctors for years now.
I may write about the whole experience in detail yet, or I may just want to tell you all in person. Please come and talk to me so I can thank you for praying. Right now I am happy for sunshine, bare feet, hot, salted food, and having the nasty IV cord out at last.
Mom told the story pretty well, although "babyish" is not the word I'd have used. Her account is below.
Mom's Daily Reports
Thursday, May 2nd
We would like to ask for prayer for Celeste. She has had some personality changes over the last couple of days.
This morning, Chuck took Celeste to the ER after a night of not sleeping and talking in a baby voice all night.
Celeste has had an MRI and an EEG. The MRI cleared up the question of a tumor or a bleed- all was negative. The EEG showed an indicator toward a viral infection, which they will begin to treat with anti-virals before they have determined the exact cause. They are still going to do a lumbar puncture to pin-point causes.
She had to be sedated for the MRI, and will be again for the puncture, since she is uncooperative in a child-like way. This is the first time she stopped talking for at least 24 hours.
She is going to be admitted this evening and kept in until a firm diagnosis and assurance of prognosis and improvement is made.
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Friday, May 3rd
Good morning, friends! Celeste and Chuck spent the night in the ER, but thankfully moved to a quiet wing. They got a few hours of sleep, so that is an answer to prayer.
Chuck says that Celeste is showing slight improvement in her cognition and function. In other words, she is talking about more "normal" topics. This may be her responding to anti-viral medication or it may not be.
The doctors say encephalopathy has 100 different causes with 100 potential outcomes. We are still looking at most of the list in front of us. The lumbar spinal fluid draw should be a good tool to narrow down the range of options.
Please pray for this procedure to go well. She will need to be sedated.
Celeste is continuing to be cheerful and accepting, but not understanding. It's hard to describe her continuous conversation. It's sort of like "Oo,oo, oo, Daddy, the bed is green, I can sit on the green bed. And it won't crack off? What's the difference between cracked and crooked? Daddy, you crack me. If I'm crooked, does that mean I'm a croo-oo-ook?" Her love of words is obvious :)
Please pray for Celeste to be healed, for direction from the tests and for Chuck to continue to have patience with her. He has been specially chosen and prepared for this job, since it is remarkably similar to the work he did for seven years as an individual companion for a man with a different mental ability. Praise the Lord for this!
Friday afternoon
They've finished her lumbar puncture. She is still in the ER at HSC for now even though she has been admitted since last night. Please pray for a bed to open up.
Chuck says she is resting well this afternoon, after several consecutive days of no sleep. Thank you to everyone who has offered to help and visit- right now, there is no need or room for visitors, and we will let you know if that changes.
They will test the spinal fluid, and even though conclusive results may take a while to get back, there will be some expedited testing to direct her treatment in the meanwhile.
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There are new positive signs- Celeste has slowed down, both with her ability to sleep and her need to be speaking constantly. She is also asking some relevant questions- "Why am I not at home?" is a good example. She was not able to think this way before.
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Saturday morning
Our visit last evening was very good, we were there at the right time to help move her onto the ward. She has small, shared room, but it is a great improvement.
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She finally slept well overnight and has woken with the ability to hold a fairly normal conversation. Praise the Lord!
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Please continue to pray for healing, direction and comfort for those in the hospital. Right now, visits and help are not needed, although we love you all and appreciate your offers. Just continue to pray and we will let you know if we have specific needs.
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Saturday afternoon
Celeste's hospital stay and road to recovery may be quite long. There is no new news over the weekend, as things slow down in the hospital, and tests results aren't back. I would describe her progress as about 10% on the road from initially completely crazy to back to her normal self. The fact that she slowed down and got quieter improved our ability to look after her, but really her cognition is not near normal. She does ask relevant questions- "Why can't I come home with you?" or "What do I feel poking in my arm?" but doesn't really understand the answers.
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Sunday afternoon
We enjoyed our first family visit today. Celeste had a tough night but was able come down to a nice place in the hospital foyer to have us visit all together. Her movements and cognition have improved. She is starting to ask about the last week and confirm her memories of what happened. Thank you for praying, please don't stop. She is not out of the woods yet, and a diagnosis is important to knowing how things will proceed.
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Regardless of her progress, things will change this week. We are starting our first tour on Wednesday, and that means all family members will need to be on duty every tour day. We will ask for help as we need to, don't worry!
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Monday morning
Well, let's just praise the Lord together right now, Celeste is in her right mind! She has lingering effects of her "autistic brain" as she calls it, but is fully lucid. I just returned from spending the morning with her and Chuck. Her doctors are very pleased. However, diagnosis is still wide open and awaiting the spinal fluid results. It is possible that her anti-viral meds would need to continue for two weeks by IV if she tests positive for a virus. We'll know more in the next one or two days. We have a plan in place for the rest of the week, so thank you so much for praying and all the offers of help! Chuck will be coming home tonight. The hospital will provide nighttime companions, which is nice. Daytime visits could start for her soon, but please check with us before you think of going- a steady stream of conversations is not what her healing brain needs right now.
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Tuesday afternoon
Today was a day of eliminating possibilities. Celeste says she is back to normal, and normal was what came up in so many test results. She had another EEG, which came back normal. Her spinal fluid shows no infectious signs, her blood work is normal and all of her reflexes have returned to what they were. In other words, the mystery increases with every negative result. The list of potential diagnoses is much shorter, but not as clear. Since she doesn't need the anti-viral IV anymore, she will come home soon.
She can describe in detail all of the days of her derangement and how it felt to be "crazy". I'm sure her own words will be more interesting, so I'll leave that to her. We're so grateful for everyone who has been praying and caring for us. She doesn't want any surprise visitors, so if you would like to visit her, please check with me first. :) Chuck is back home and happy for a good rest, and Celeste also had a decent sleep on her first night alone. We're very thankful!
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Also, please pray for our family as we host our first tour tomorrow. We've been provided with a lovely babysitter and a baby who doesn't mind the occasional bottle, which is allowing me to be there for doctor's rounds each morning this week. What a blessing!