The evening of the surgery...

I figured that I had a bit to write so that I would update here and just link it to facebook.

Charlie is doing OK.  He was able to sleep for most of the time between 7:30 and 10.  His pain level had been pretty good, but just recently started getting worse again.

There was a bit of an issue with his pain level.  Charlie has a high pain tolerance as it is, so it was so hard to see him in so much pain.  They had to cut through a lot of muscle to get in where they needed to, and that's what is causing so much pain.  It hurts to move his mouth or his neck, and it just hurts in general.   The nurse Gerry was trying to do all he could, but there was only so much he could do.  He said he's the private, the doctor is the general, and he just takes the orders.  He said that the only way he would be able to get pain meds would be if I talked to Dr. Al-Mefty myself about it.  He said that in all of the doctor's time at the hospital, it has been his policy to not give pain meds.  Gerry didn't know exactly why but just that it was the way he did things.  Gerry said he's been on Dr. Al-Mefty's patients in days 2-3, but not day 1 before so hadn't been in this situation.  I was pretty worried about having to call and talk to the doctor, but I told Charlie I would do anything I had to do so that he would be OK.  It just broke my heart so much to see him in SO much pain!  He said it was a 15 on a scale of 1-10.  (no mom, he didn't go from a 2 to a 25...)  They had paged a doctor around 7, and he finally showed up after 9.  This doctor (I never remember names) was super nice.  The other doctor that had been around earlier wasn't very personable, was rather rushed and pretty harsh and impatient on poor doped up Charlie.  This second doctor was very friendly and calm.  He introduced himself to me and explained to me why they can't give Charlie any heavy duty pain meds.  He said that Al-Mefty doesn't let his patients have pain meds because he specializes in surgeries that other doctors can't do.  He works in parts of the brain that other doctors won't touch and he is able to do that because he is extremely careful.  And in order to be as careful as he can be, he can't let the patients have pain meds.  The reason is that there are two types that he can take -- ones that increase bleeding, and ones that make you tired.  He can't have anything that increases bleeding since we don't want his brain to bleed!  And if he has meds that make him tired, they won't know if there is a bigger problem.  The doctor said that the parts of the brain that Al-Mefty works with, are parts that are only able to announce that they're not ok by making the person really tired.  Not in a need rest sleepy kind of way, but in a hey I'm really doped up can't respond to you kind of way.  So if anyone thought he wasn't responding because of the meds and it was really because something was wrong, then something catastrophic could happen, (and probably has in the past).  So, for his well-being, they have to accept that he will be in a bit more pain than would be preferable, so that they're sure he is OK and nothing serious is wrong.  So that seemed acceptable to me.  Though it may not have been so much if Charles was still in excruciating pain!  Also, thankfully the doctor made a phone call, not sure if it was to Al-Mefty or not, but he got the OK to order some more codeine.  The dose he had gotten before was just a one time dose that was allowed.  But now he is able to get more. I'm not sure if the codeine is just a lower level pain med that it's OK, and they just can't give him morphine or whatever?  I would hope so, because otherwise he'd be full of boloney.  Hah.  So he's got another dose of that I think, and he can have tylenol every 4 hours.

He's had a bit of an issue with blood pressure, the aterterial line and the cuff were varying.  The cuff was saying 120s and the arterial line was saying up to 165, so the nurse had the doc check on that and they said to go by the cuff.  So that's good that his blood pressure isn't actually that bad!  They gave him lots of meds... multi vitamin, thiamine, folate, stool softener, his keppra... something else I think...  His oxygen has thankfully been really good!  He had the mask on when he first got here and it was really bugging him, so they put in the nose hose thing.  He had that for a couple hours until Abby pointed out that it wasn't even really actually in his nose anymore.  At that point his O2 was at 95, so they removed that and said they'd just monitor and hopefully he wouldn't need it, but might overnight.  It has been pretty consistently 95 so that's really nice that he doesn't have to be annoyed with that too along with all his other crap!

ANOTHER awesome thing is that he got a bed extender!  The nurse asked him if he wanted to be adjusted because he looked a bit cramped, he said yes.  She asked how tall he was.  I said I'd asked if he could get a bed extender when he was in pre-op.  She said she could order one.  15 minutes later there it was!  10 seconds to pop in and he's got an extra foot of room!  Awesome!  Where was THAT last time?!?!?!  Poor guy!  So right now he's snuggled up with a couple blankets, snoozing away.  That makes me VERY happy!!!

I am also SUPER grateful to these nurses right now!  Apparently they recently changed the rules so that they do not allow overnight guests.  Last time I had no problem staying here.  However, the nurse said that since it was pretty quiet, it was OK with her if I stayed.  She finally got me a recliner around 9:30.  I was going to wait to get settled in until Charlie was doing better, so my overnight stuff is all still in my car.  Well, it looks like I WON'T be going to get that stuff!   The nurse told me that if anyone asked, I was not spending the night in the room.  I guess a family member of the person in the next room asked to spend the night and they said no!  I don't know if that person was too obnoxious or what the deal was, maybe they had a not as nice nurse, maybe they're being nicer to us because it's a crazier surgery, Dr. Al-Mefty is THE man, or the connection to Dr. Samuels, or WHAT, but I'm not looking a gift horse in the mouth!  She said she might have to kick me out at some point, but please keep your fingers crossed that it doesn't have to come to that!!!!  I REALLY want to be able to stay here with him!!!!  Also, if you're ever here, please don't play the "I know someone who was allowed to" card... just be really nice!  Maybe it's because I'm such a lovely lady, I don't know!  But being sweet (and quiet) doesn't hurt!!!!

Ahh I probably have more I wanted to say but at this point I'm not sure.  So I'm going to get comfy and see if I can get some sleep!  Please keep thinking about Charles and hope for a great recovery, less pain, and no complications!  And hope that I get to spend the night without a problem :-D

Love,
Sue

p.s. totally too tired to re-read this before I post, so if something doesn't make sense, oh well!!! :)