I think my post yesterday gave the impression that we were going to be back in Ann Arbor today – not so. Lisa was discharged but we decided to stay in Cleveland one more night just to make sure everything’s fine. We’re driving home sometime Monday.
We just got our walking papers – Lisa is officially discharged and free to go!
I talked with the docs about last night’s excursions and nobody was surprised, it could have been anything from 1) the side effects of one of the drugs to 2) sheer exuberance and celebration about having all of this behind her and about all of the love and support she’s been getting.
We’re going with number 2.
She remembers our walks very fondly and is still singing the praises of her surgical team. In particular Dr. Devin, the anesthesiologist who got her over her toughest fear – the fear of being put under.
We are packed and about to walk down to M35, the Peds Epilepsy Monitoring ward where she spent her first 3 visits. She’s loving the freedom to walk on and off the ward, on and off of the floor, and in and out of the building.
Lisa was describing to Jean her visit to the chapel last night. She was completely relaxed and talking out loud to God, thanking God for bringing her through all of this.
What a night.
It’s been an interesting few hours.
I’ve been pushing Lisa around the hospital building in a wheelchair since about 1 a.m. She asked me if we could go for a walk, which we did, then returned to the room. But, she wanted to go on another walk and was (slightly) insistent. When we got going, she started chatting pretty close to nonstop.
She’s been chatty all evening. We visited the 3rd floor (M35) around midnight to see if any of the nurses were there who had worked with us during our last visits. A couple of them were and it was a nice visit. Lisa chatted a lot about her hair, about Harry Potter, about her surgery. Jean commented on how chatty Lisa was being.
During our walk around the hospital, Lisa was talking a bit non-stop about how protected and safe she is feeling, the love surrounding her, the posts on her blog, the prayer quilt. It was wonderful.
And there is a “but”. (Maybe with me there is always a “but”.)
I’m wondering if this is a manic thing. The overall feeling of elation and her non-stop chatty expression. I am not concerned – even if it IS related to the surgery, I assume it’s temporary. I am writing it down for two reasons. The first is the same reason I’m writing this stuff down at all – I am hoping that someone may know someone who will go through a similar thing in the future and can maybe get some insight and comfort from our experience. There is so much comfort for Lisa and us in knowing what is coming next. Lisa had no problems at all this time with going under the anesthetic because she knew what was coming, she met the doctors who were doing it, she expressed her concerns and they addressed them. Knowledge really IS power.
The second reason I’m writing it down is for myself in 6 months or a year. When we see how she is a year from now, I can look back at this and remember what we went through to get there.
We were warned that sometimes people go into a depression after surgery like this. If that happens, then it’s reasonable to wonder if this is a similar type of reaction.
We went outside and sat for ten minutes watching the water fountain, enjoying the sounds of the water splashing and the quiet night. We talked about the operation, about her feeling so amazed that it’s all behind her now, about the love she is feeling constantly flowing her way.
We went back inside and into the chapel. I played “Sanctuary” while she prayed out loud to God, thanking God for everything that had happened and was happening, for Rupert (Emily’s bear), for family and friends, for Kayla’s beautiful card.
She’s in bed now, covered with the prayer quilt and falling asleep. She had me take the clock down off of the wall – the ticking was too loud for her. She asked me what I was typing. I assumed the noise might be keeping her awake, but just the opposite, she said she finds it soothing.
We are probably going to leave the hospital tomorrow. I expect we will stay at the hotel nearby for at least one more night after that. They’ve moved her down from morphine to percocet today, plus she’s still on her regular dose of trileptal. They’ll look at that in about 6 months and decide if we should cut the dosage a bit.
She is still having hallucinations, though.
She describes them as “different” than the ones that got us here. They are not accompanied by any of the feelings she had before and she is pretty sure they are not auras. In exploring it a bit more, we learned that these are typically at the periphery of field of vision, the others would have been more central.
We mentioned them to the surgery docs when they did their rounds the last 2 days (including Dr. Bingaman and Olivera) and also to the epilepsy docs and nobody was too concerned. We’d been warned about the possibility beforehand and I’m feeling pretty confident that this is just the brain adjusting to the trauma of the surgery.
They were coming pretty regularly tonight as we walked around. She’d see someone sitting in a chair and stretching, or C3P0 or an exit sigh where there were none. She said that she could easily recognize them as hallucinations and that they always went away when she looked directly at the spot. We’ll see how that all looks tomorrow and in the days to come.
Overall, though, this is all very positive and exiting. The progress she’s made from Wednesday night and Thursday to yesterday and today is night and day. Even mid-day Thursday, she’d wake for a few minutes and talk, but then be exhausted and go back to sleep. Today, she and I walked from the room to the elevator to 1st floor cafeteria and back, talking all the way, and she showed no signs of fatigue. Just night and day different.
I’m going to call it a night and get some sleep.
Sorry about the long gap between posts.
We are sitting in Lisa’s hospital room watching an adventure movie. I’ll let you ask her which one.
She’s doing great with her recovery. The difference between Lisa on Thursday and Lisa on Saturday is amazing. On Thursday, the best we would get is that she would wake up for a minute or two and say “hello, my head hurts”. Today, she was joking with the nurses and doctors, we took her up to the roof to see the panorama of the city, then to the gift shop where she bought a sailor’s type cap and some “Freudian Slip-pers”.
She IS having hallucinations, which is not unexpected. They are around the periphery of her vision and range from seeing a surfing poster to an automobile to Ron Weasley from Harry Potter. We talked with the surgical docs and the epilepsy docs when they did rounds and nobody is surprised or worried about it. They did warn us that this might happen for a bit after the surgery, so we’re just waiting it out.
We could be leaving the hospital as early as tomorrow. We will most likely stay in Cleveland a few more days, at least until the hallucinations clear up and we feel like she’s ready for a three hour car ride back home.
One more thing – for those of you who might only be on my list, here’s a link to Lisa’s blog. Mine is a bit more “what’s going on in dad’s head”, hers is written by Lisa and Jean and probably a bit more direct: here it is.
Just had my first really scary moment of the trip. Truly frightening.
Lisa woke up about 10 minutes ago and mumbled something I couldn’t make out. I was a few feet away from her, working at my laptop. I walked over to her side of the bed and asked her to repeat it and she mumbled something incoherent again.
What was going on? Was all of the progress up until now just a honeymoon period? Were we about to deal with some ugly, cold, hard facts about long term mental deficits?
I asked her if she knew her name and she looked at me puzzled and said “Lisa Fedel”. Then, I asked, do you know where we are? She froze again and just looked at me. This was it, the truth bubbling to the surface. We’d had a good couple of days, some lucid moments, some conversation even, but now that the anesthetic was (mostly or all?) out of her system and she’s on her own, we were going to see something different.
Unreasonable? Illogical? Yep. But you don’t really care when it’s your kid you’re staring at, listening to her making sounds that aren’t quite words.
Then, she said “I have to go to the bathroom. NOW.” I doubt those words ever sounded sweeter to anyone before. We handled that and she is now sleeping peacefully again. I doubt I’ll be sleeping anytime soon…
Two more things:
Lisa had given me a list of questions to ask her when she woke up. I think she was fascinated by the idea of the Versed wiping away memory, or just curious about how “out of it” she would be during recovery. I asked her two or three times yesterday if she wanted me to ask her the questions and she weakly shook her head.
Today, tho, I asked her two and she got them both right. “Who’s your favorite Harry Potter character?” things. It was just fun and I think it’ll be fun for her to hear the stories about it…in a week or two.
The second thing I wanted to write about is just the experience of sitting her with her.
The human body is amazing. In moments like this, you realize how strong and how fragile we really are. She’s asleep but I know that she’s dealing with a pretty good amount of pain. I don’t see any sign of fear, she hasn’t asked “how did it go?” or “what did they find?” She’s just completely relaxed and letting her body heal itself. And that’s her job right now.
She’s a beautiful, amazing little kid recovering from something that happened to her 12 years ago. It was tough on her, she was nervous right up until the last minutes, but she knew what she had to do and did it.
When she’s awake, we’ve been reading her the comments folks are posting on her website. It’s brought a big smile to her face, hearing from friends near and far, everyone wishing her the best and sending prayers her way. She feels so taken care of, she can just completely relax and recover.
No real news to report. I got a good night’s sleep last night, didn’t get back to the hospital until around noon. Jean’s back there now trying to sleep, she didn’t get much last night.
Lisa’s on the bed next to me, asleep again. They’ve removed some of the tubes from her, including one of the hand tubes that was monitoring BP (fascinating). There is still a drain in her head that is letting brain fluid escape so no pressure builds up. Another amazing invention. She’s still on a lot of pain medication, but everything’s going along nicely.
She took her regular p.m. dose of meds last night, swallowed them herself and drank a little water to chase them down. Today, she’s allowed to have food. She tried some liquids this morning but it didn’t go well. I wasn’t there so I don’t have details but again, nothing out of the ordinary for someone at her stage of recovery.
She was talking today, remembers more of the prep than we would have expected with the Versed she had. She was advocating for herself, wanting us to sit her up, lower the bed, raise the bed, remove the cath, help me scootch up in the bed.
Everything is going great.