Surgery was scheduled for 7:30am on April 30th (yesterday). We had to be to the hospital at 5:45, so we had to leave the house at about 5:00am. Neither one of us slept well the night before, and both of us remembered having really weird dreams. It seems like that always happens when you're anxious. Jared was starting to get really nervous the day before surgery, I've actually been unbelievably calm lately, even while he was in surgery.
We got to ask a few more questions before surgery. One of our definite concerns was the effect that this surgery would have on his right side. The doctor sounded like he wasn't concerned at all about actual paralysis, but just weakening of his side that might require physical rehab. Jared told me before surgery that if he woke up and heard the words "physical rehab," he just might cry! We both mentioned that even walking through the rehab center would depress us. That really was a horrible couple of weeks!
They told me that the first hour or so of surgery would actually just be the "mapping" process. They said sometimes it gets complicated and takes longer. So I was watching the clock after they took him away to gauge when they were actually cutting. I got an update about two hours later. They said that he was officially under the microscope and that it would probably be another couple hours. I got another update about an hour later saying that they were getting ready to close up, and that the doctor would be out to talk to me in about 45 minutes.
At about 11:45 the doctor finally came out to see me. He said that everything went well, that the initial biopsy was indicating that it was just dead tissue, but that he wouldn't be able to confirm that for certain until he got the official pathology results back in a few days. He told me that Jared still wasn't moving his right side, but he thought he was still too groggy from the anesthesia. He also said that he had placed a piece of acrylic (he compared it to boat acrylic) in the top of his head to give a nice, smooth shape and to prevent the sags and bumps that he had prior to surgery. He told me that he thought I would like Jared's "new head." (I had joked with him before surgery that we wouldn't mind him working some of his plastic surgery magic if he felt inclined!) That was actually good news as well. Jared never talks about the shape of his head, but I know it bothered him.
I didn't get to see Jared until about 1:00pm when he was finally set up in the NCCU (neuro critical care unit). One of the first things I asked him is if he could move his right side, and he could, so that was a big relief! He was really tired the first little while. He also complained about being in a lot of pain, but a cold pack seemed to help quite a bit. Overall, things seemed to go pretty well.
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| Couple hours after surgery Not looking too bad, actually! |
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| If you notice the purple circles everywhere, he had stickers placed there to help the doctors "map" his brain to know where to cut. |
I went home that evening to see the kids before they went to bed. Brynlee had spent the afternoon making a poster for Jared. She made sure to write "Jace put no thought into it. No work by him!"
I went up to the hospital again today. They moved him out of critical care to the neuro acute care unit. He has been walking around today, which is good. His pain level is better today. He didn't sleep much last night, so he tried all day to sleep, but his medicines keep him awake. He is having problems with his fine motor skills on his right side. He can't move individual fingers, and he can't point and flex his foot or move his toes. That doesn't surprise me much. Those were the last things to come back last time, so I would expect with a lot of swelling that he might have problems with those right now. I think all of that will come back with work. But it's a little scary thinking that prior to this surgery, he still wasn't 100% in those areas, in fact I would maybe say 60-70%. So I'm hoping this surgery won't make those even worse.
The biggest concern right now is his speech. The speech therapy lady calls it "word finding." I knew he was having a little trouble yesterday, but figured he was groggy. Today he's really getting frustrated. He says he knows what he wants to say but it comes out wrong. He can give simple answers to questions, but if you have him try to explain something, he can't do it. He gets stuck on a word and gets really frustrated and gives up. And I've also noticed that sometimes when he's frustrated he will keep repeating himself. For example, the nurse had mentioned hearing something with his heart (something the nurse said was normal), and after the nurse left, I asked Jared what the nurse was talking about with hearing something in his heart, and he said, "I didn't hear anything. I didn't hear anything. I didn't hear anything. He didn't hear anything." (I think he was trying to say "he" the whole time, but couldn't get it out. Even still, the way he answered my question didn't make much sense to me and I just dropped it because I could see he was frustrated.) So he will probably require some speech therapy. I don't know how much at this point. I do remember him having issues with word finding from his first surgery, but this time seems quite a bit worse.
I knew there was a reason I was dreading this dumb surgery. I think we both remembered how bad the recovery was, but I must have forgotten all of these little things that seem to take forever to get back to an acceptable state. And I don't say normal state, because none of these things have ever gone back to the way he was before all of this. So now we're stuck with acceptable. As long as he his personality and humor don't change, I will be able to deal with the rest of this. (Knock on wood!)
