Charles and I have been home since 2. He's been sleeping off an on. We were both SUPER happy to be able to shower! At least we were prepared for the surgery in some ways this time around since we didn't have a whole lot of advanced notice (having a shower seat, etc). He's been taking the max dose of codeine that he can, and also tylenol. He's due for another dose at 11, in addition to some more decadron (steroid- it sucks). Some fluid has pooled under his eye and it's nice and green and puffy. He's eaten a good amount today and that has made me very happy! Last night he drank a little broth and that was about it. This morning he had a little scrambled eggs and some orange juice. When we got home, I made him some chicken & vegetable soup. I was hoping he would be able to swallow some of the veggies, and he tried drinking it through a straw and it didn't work out so well, so we sent it through the blender! It worked really well... turned into a chicken veggie bisque or something. I was very happy he actually got in some protein & veggies. He also had some mashed potatoes and a couple spoon-fulls of applesauce.
We also got a brief visit from Osh & Michele which was lovely... and they fed the cats for us :-D Awesome. I SUPER appreciate not having to do that tonight! I'm ready to crash... poor Charlie is in pain.. I gave him the pain meds a little early, I hope it will kick in soon and he can get some good sleep in.
Anything else I can update about later :)
Goodnight! Thanks everyone :)
Thursday, September 8, 2011
Wednesday, September 7, 2011
Day 2
Day 2 has been tough for Charlie. He has been in pain pretty much all day. He tried getting up twice and it caused more pain both times. He walked a little bit on the first go. The second try he went to the bathroom and sat in a chair for a bit. The second time they wanted him to sit in the chair until Dr. Al-Mefty came around. Apparently he REALLY wants to see his patients sitting on the 2nd day. Well when he finally showed up, Charlie was back in bed. He had sat in the chair for a half hour, even though it was really painful and he kept asking to get back into bed. The doctor wasn't pleased, but there was me and 3 nurses telling him, he WAS up, he DID walk, he was sitting waiting for you, but he's in too much pain! He babbled on about needing to get up and walking and sitting. I understand he's just trying to keep Charlie safe. If he stays laying in bed too long, he could get pneumonia or blood clots and of course we don't want that! But still it's tough for him because his head hurts so much.
A while after we saw the doctor, his partner came by. We had spoke with him in pre-op last week, and he kind of helped explain things better than dr al-mefty had. He stopped by to check in on Charles and asked about his pain. He said as long as it stays consistantly the jaw and on the right side then it was OK and expected. But if it changes, becomes stabbing, or starts hurting the rest of his head then it could be an indication of something being wrong. No one mentioned when he should go home. I definitely don't see him getting out in the morning at least. Maybe if he does really well he will get out tomorrow evening, if not, probably Friday morning.
He has moved out of the NICU and up to a regular room. He's been asleep pretty much the whole time since he has moved. He was given some more codeine about a half hour after he arrived and has been conked out since then, so that's nice. It's late. no one is going to be bugging him to do anything tonight so the more rest he gets the better and hopefully he will feel up to doing a bit more in the morning.
We had some other visitors today. Dr. Samuels stopped by and checked in on him. He said he was very happy with how Charles was doing, and said that his mother sure does talk! He mentioned having her for dinner and Charles said "I bet she tasted bad." Haha. Apparently Suzanne and Susie have been having a lovely time catching up, so that's nice! It's good to have something to relax her a little bit, she has had such a stressful summer!
We also got a visit from Dr. Prasad the neuro-opthalmologist. Charlie saw him for an exam this summer, and had been scheduled to see him for a follow up next week. He wasn't around last week when Charlie needed a pre-op eye appt, so Dr. Prasad wasn't able to do it. He had checked in on his case and was happy to see that his eye sight hadn't gotten any worse. He said that he had been very cautious and worried because his concern was the eye sight and that the surgery was very risky and could have lead to worse problems with his sight. So he was very relieved that the surgery had gone so well.
Nurse Gerry stopped by for a visit today too, which I thought was very nice. He was around last night when Charlie was in the worst pain, and was very relieved to have found out that his night was actually fairly calm, he was worried he would have a rough night. I also explained to him what the doctor had told me about why they didn't want him taking pain meds, and he appreciated that.
His night nurse was Jody who was nice, and his nurse today was Jean Anne who was also great. His nurse right now is Tracey and she seems pretty awesome, too bad she's going to be off shift soon, let's hope his overnight nurse is great as well!
It's almost 9 and no one has said anything to me about visiting hours or leaving... I know before they were like well you need to talk to the overnight nurse, so Tracey might be just leaving me be since I'm not causing any problems. Or maybe the NICU nurses told them I'd want to stay, I'm not sure. I haven't mentioned anything because I don't want to be told I have to leave, haha. Even though it would probably be smart to find out and make arrangements if I need to leave... I've got a high back chair, a pillow, and a chair to rest my feet on... I'm actually fairly comfortable... I could probably spend the night here OK if I needed to. I don't think I'd sleep GREAT but I probably wouldn't sleep much better not being here. We'll see! Who knows what will happen.
I'm happy that his roommate doesn't seem to be so lousy this time. He's an older man who just had a stroke. His middle aged daughters and wife were here when we arrived, they were all very polite and left about an hour ago. He has been pretty quiet. I did hear them discuss that he had problems sleeping... so I'm not sure if that might be a reason that they may make me leave... but he's been quiet and not watching TV loudly or talking to anyone, so that's good with us! He's not obnoxious or smelly, so THAT's good! They might make me leave due to old man privacy issues... we'll see, like I said.... wish me luck! I'm kind of just winging it at this point... because I'm content with where I am right now. If Charlie needs me, I am right here where I am supposed to be.
A while after we saw the doctor, his partner came by. We had spoke with him in pre-op last week, and he kind of helped explain things better than dr al-mefty had. He stopped by to check in on Charles and asked about his pain. He said as long as it stays consistantly the jaw and on the right side then it was OK and expected. But if it changes, becomes stabbing, or starts hurting the rest of his head then it could be an indication of something being wrong. No one mentioned when he should go home. I definitely don't see him getting out in the morning at least. Maybe if he does really well he will get out tomorrow evening, if not, probably Friday morning.
He has moved out of the NICU and up to a regular room. He's been asleep pretty much the whole time since he has moved. He was given some more codeine about a half hour after he arrived and has been conked out since then, so that's nice. It's late. no one is going to be bugging him to do anything tonight so the more rest he gets the better and hopefully he will feel up to doing a bit more in the morning.
We had some other visitors today. Dr. Samuels stopped by and checked in on him. He said he was very happy with how Charles was doing, and said that his mother sure does talk! He mentioned having her for dinner and Charles said "I bet she tasted bad." Haha. Apparently Suzanne and Susie have been having a lovely time catching up, so that's nice! It's good to have something to relax her a little bit, she has had such a stressful summer!
We also got a visit from Dr. Prasad the neuro-opthalmologist. Charlie saw him for an exam this summer, and had been scheduled to see him for a follow up next week. He wasn't around last week when Charlie needed a pre-op eye appt, so Dr. Prasad wasn't able to do it. He had checked in on his case and was happy to see that his eye sight hadn't gotten any worse. He said that he had been very cautious and worried because his concern was the eye sight and that the surgery was very risky and could have lead to worse problems with his sight. So he was very relieved that the surgery had gone so well.
Nurse Gerry stopped by for a visit today too, which I thought was very nice. He was around last night when Charlie was in the worst pain, and was very relieved to have found out that his night was actually fairly calm, he was worried he would have a rough night. I also explained to him what the doctor had told me about why they didn't want him taking pain meds, and he appreciated that.
His night nurse was Jody who was nice, and his nurse today was Jean Anne who was also great. His nurse right now is Tracey and she seems pretty awesome, too bad she's going to be off shift soon, let's hope his overnight nurse is great as well!
It's almost 9 and no one has said anything to me about visiting hours or leaving... I know before they were like well you need to talk to the overnight nurse, so Tracey might be just leaving me be since I'm not causing any problems. Or maybe the NICU nurses told them I'd want to stay, I'm not sure. I haven't mentioned anything because I don't want to be told I have to leave, haha. Even though it would probably be smart to find out and make arrangements if I need to leave... I've got a high back chair, a pillow, and a chair to rest my feet on... I'm actually fairly comfortable... I could probably spend the night here OK if I needed to. I don't think I'd sleep GREAT but I probably wouldn't sleep much better not being here. We'll see! Who knows what will happen.
I'm happy that his roommate doesn't seem to be so lousy this time. He's an older man who just had a stroke. His middle aged daughters and wife were here when we arrived, they were all very polite and left about an hour ago. He has been pretty quiet. I did hear them discuss that he had problems sleeping... so I'm not sure if that might be a reason that they may make me leave... but he's been quiet and not watching TV loudly or talking to anyone, so that's good with us! He's not obnoxious or smelly, so THAT's good! They might make me leave due to old man privacy issues... we'll see, like I said.... wish me luck! I'm kind of just winging it at this point... because I'm content with where I am right now. If Charlie needs me, I am right here where I am supposed to be.
Surgery Facebook Updates
I've made a lot of facebook updates since the surgery. I figured I'd post them all here as well.
About pre-op:
Getting up at 4:30 am is just inhumane!
September 1 at 6:54am via mobile
Brigham and Women's fails... his pre op stuff is all messed up. We might have to be back here at 7 tomorrow. Awesome.
September 1 at 7:36am via mobile
Saw an old man with a bow tie today. Bow ties are cool.
September 1 at 7:53pm
If once was inhumane, I don't want to know what twice is... but its awful. I'm impressed we got here alive, I am so incredibly.exhausted I can barely keep my eyes open. Wow. Not looking forward to next week! Must get lots of sleep this weekend.
September 2 at 6:58am via mobile
I love how much doctors love Charlie. He is such a blast. The op tech loves him right now :) she is pretty awesome though.
September 2 at 9:18am via mobile
It has been one craaaaaaaaaaaaaaazy week!
September 2 at 2:27pm
SURGERY:
At the hospital admitting Charles for brain surgery for another shot at removing his brain tumor. Had hoped we would never be back here. It doesn't seem real. Please keep him in your thoughts and prayers.
Yesterday at 5:35am via mobile
We have said our see you laters... its a long day ahead. They have the OR booked for 9 hours. Dr. Al-Mefty is slow but thorough. Please send Charles all the good wishes you can!
Yesterday at 7:05am via mobile
We have left Charles Horn with the anesthesiologist. At least the day will go by quickly for him! It will be a long day for us! They have the OR booked for 9 hours. Dr. Al-Mefty is slow but thorough. Please send Charles all the good wishes you can!
Yesterday at 7:13am
No news is good news. We were told that the surgery (scheduled for 7:30) didn't begin until 8:50. But I think that's because the doctor is super thorough and slow. We prob won't be seeing him for a few more hours. Keep your happy thoughts coming!
20 hours ago via mobile
Charles Horn is still in the OR. They started closing him up a bit less than an hour ago and said it should take at least an hour. So, hopefully we'll hear from them sooner than later. Really really really really hoping they will give us good news!!!!!!!! Please keep rooting for him!! ♥
18 hours ago
Charles Horn has made it through surgery! They just told us that it was finished at 3:00. We will hopefully hear from Dr. Al-Mefty soon!! YAAAAAYYYY!!!!!!
18 hours ago
Charles Horn IS OK!!!!!!!!!!! Dr. Al-Mefty just came out and told us that he thinks he got all of the tumor, went into the optic canal and got lots out, it was wrapped around everything and it's all away from the left optic nerve and all out and YAAAAAY! It will be a bit before he's awake but OMG YAY!!!!! Keep your fingers crossed!!!! They have to do an MRI to make sure it's all out, but YAY!!!!!!!! Thank you all for everything!!!
18 hours ago
RECOVERY
Charles Horn woke up enough to tell me our code phrase and conked right back out! :) SOOOOOO happy! Will let you know when he's alive enough to tell us he can see! Granted he wont be wearing his glasses for a while but still :) ♥ ♥ ♥ ♥!!!!!!!!!!!!
17 hours ago
Well, he can see fingers!!!!! :-D Charles Horn
17 hours ago
Everything is going to be ok!!!! He said he loved me, he gave Abby a hi-5, told his mom she was an old broad and went back to sleep :) Everything is going to be JUST FINE!!!! Thank God!!!!! ♥ (Charles Horn)
17 hours ago
Poor Charles Horn is in soooooo much pain! It is just breaking my heart!!! And apparently Dr. Al-Mefty has a policy of NOT giving his patients any pain meds! Yes, brains don't feel pain, but the jaw and neck muscles you sliced through sure as hell do!!!! They paged the doctor that's on right now and I'm going to talk to him about asking Dr. Al-Mefty for pain med because it is EXCRUCIATING. Please wish him luck!!! :'(
14 hours ago
Please please please let him stay asleep for a while! Any sleep is a blessing to be relieved of a little of the pain.
14 hours ago via mobile
Well it looks like the codeine has helped some at least! He slept for about a half hour. He woke up needing a drink, so the nurse gave him 2 tylenol that she said she'd get him before he fell asleep. He took those. She asked if she could do anything to make him more comfortable and he said "not unless you can make my head heal right now". ♥ (Charles Horn)
13 hours ago
Taking a quiet moment to be so immensely grateful that my Charlie is ok!!! I have been so terrified!! And, you know what? I will declare publicly that someday I WILL (at least try to) have his babies! Haha. (though I'm at least still going to try to get him to do the pregnancy and labor bit...)
13 hours ago
Charles Horn has slept for about an hour total now! YAAAAY! :) He just woke up for a sec, had me cover him back up and get him some juice. I asked if I could get him anything else, and besides the 'new head' he also asked for a Fiona(our cat) to lay on him :) SO CUTE!!!!
13 hours ago
We've both got in a couple hours of sleep. Spent the last half hour or so chatting. So nice to see him gradually more alert and back to normal. And so lucky he doesn't have any identifiable deficits at this time! Ok back to sleep!
9 hours ago via mobile
Taking him in for a CT scan in a few. Pain is 7/10, but just got some codeine. He is thankful the CT is faster and quieter than MRI.
5 hours ago via mobile
Charles Horn is back from a quick CT scan. He's snuggled back in nicely and got an ice pack for his jaw. Pain is still moderate, just waiting for the codeine to kick in and trying to get some more sleep. He is anxious to get out of here! :) Hoping he can continue sleeping well and that the next day goes well! He said he's ready to try getting up, since he wants to get out of here ASAP. Will keep you updated! He wants you all to know he appreciates everything and thanks for the kind words.
4 hours ago
he's pretty miserable but the pain meds are hopefully starting to kick in. the nurse said she'd leave him alone for a bit, so I'm going to try to get some sleep too :) (Charles Horn)
about an hour ago
Poor boy is in lots of pain. Ate a little scrambled eggs. Or should I say swallowed. Got some more pain meds but they haven't helped yet. He's hot but his temp read OK. His right eye is a bit droopy, but he can open it OK when he tries, he said it's just easier not to, so most of the time he opens just his left eye or mostly the left and a little of the right. The whole right side of his head is in a LOT of pain.... (Charles Horn)
about an hour ago
About pre-op:
Getting up at 4:30 am is just inhumane!
September 1 at 6:54am via mobile
Brigham and Women's fails... his pre op stuff is all messed up. We might have to be back here at 7 tomorrow. Awesome.
September 1 at 7:36am via mobile
Saw an old man with a bow tie today. Bow ties are cool.
September 1 at 7:53pm
If once was inhumane, I don't want to know what twice is... but its awful. I'm impressed we got here alive, I am so incredibly.exhausted I can barely keep my eyes open. Wow. Not looking forward to next week! Must get lots of sleep this weekend.
September 2 at 6:58am via mobile
I love how much doctors love Charlie. He is such a blast. The op tech loves him right now :) she is pretty awesome though.
September 2 at 9:18am via mobile
It has been one craaaaaaaaaaaaaaazy week!
September 2 at 2:27pm
SURGERY:
At the hospital admitting Charles for brain surgery for another shot at removing his brain tumor. Had hoped we would never be back here. It doesn't seem real. Please keep him in your thoughts and prayers.
Yesterday at 5:35am via mobile
We have said our see you laters... its a long day ahead. They have the OR booked for 9 hours. Dr. Al-Mefty is slow but thorough. Please send Charles all the good wishes you can!
Yesterday at 7:05am via mobile
We have left Charles Horn with the anesthesiologist. At least the day will go by quickly for him! It will be a long day for us! They have the OR booked for 9 hours. Dr. Al-Mefty is slow but thorough. Please send Charles all the good wishes you can!
Yesterday at 7:13am
No news is good news. We were told that the surgery (scheduled for 7:30) didn't begin until 8:50. But I think that's because the doctor is super thorough and slow. We prob won't be seeing him for a few more hours. Keep your happy thoughts coming!
20 hours ago via mobile
Charles Horn is still in the OR. They started closing him up a bit less than an hour ago and said it should take at least an hour. So, hopefully we'll hear from them sooner than later. Really really really really hoping they will give us good news!!!!!!!! Please keep rooting for him!! ♥
18 hours ago
Charles Horn has made it through surgery! They just told us that it was finished at 3:00. We will hopefully hear from Dr. Al-Mefty soon!! YAAAAAYYYY!!!!!!
18 hours ago
Charles Horn IS OK!!!!!!!!!!! Dr. Al-Mefty just came out and told us that he thinks he got all of the tumor, went into the optic canal and got lots out, it was wrapped around everything and it's all away from the left optic nerve and all out and YAAAAAY! It will be a bit before he's awake but OMG YAY!!!!! Keep your fingers crossed!!!! They have to do an MRI to make sure it's all out, but YAY!!!!!!!! Thank you all for everything!!!
18 hours ago
RECOVERY
Charles Horn woke up enough to tell me our code phrase and conked right back out! :) SOOOOOO happy! Will let you know when he's alive enough to tell us he can see! Granted he wont be wearing his glasses for a while but still :) ♥ ♥ ♥ ♥!!!!!!!!!!!!
17 hours ago
Well, he can see fingers!!!!! :-D Charles Horn
17 hours ago
Everything is going to be ok!!!! He said he loved me, he gave Abby a hi-5, told his mom she was an old broad and went back to sleep :) Everything is going to be JUST FINE!!!! Thank God!!!!! ♥ (Charles Horn)
17 hours ago
Poor Charles Horn is in soooooo much pain! It is just breaking my heart!!! And apparently Dr. Al-Mefty has a policy of NOT giving his patients any pain meds! Yes, brains don't feel pain, but the jaw and neck muscles you sliced through sure as hell do!!!! They paged the doctor that's on right now and I'm going to talk to him about asking Dr. Al-Mefty for pain med because it is EXCRUCIATING. Please wish him luck!!! :'(
14 hours ago
Please please please let him stay asleep for a while! Any sleep is a blessing to be relieved of a little of the pain.
14 hours ago via mobile
Well it looks like the codeine has helped some at least! He slept for about a half hour. He woke up needing a drink, so the nurse gave him 2 tylenol that she said she'd get him before he fell asleep. He took those. She asked if she could do anything to make him more comfortable and he said "not unless you can make my head heal right now". ♥ (Charles Horn)
13 hours ago
Taking a quiet moment to be so immensely grateful that my Charlie is ok!!! I have been so terrified!! And, you know what? I will declare publicly that someday I WILL (at least try to) have his babies! Haha. (though I'm at least still going to try to get him to do the pregnancy and labor bit...)
13 hours ago
Charles Horn has slept for about an hour total now! YAAAAY! :) He just woke up for a sec, had me cover him back up and get him some juice. I asked if I could get him anything else, and besides the 'new head' he also asked for a Fiona(our cat) to lay on him :) SO CUTE!!!!
13 hours ago
We've both got in a couple hours of sleep. Spent the last half hour or so chatting. So nice to see him gradually more alert and back to normal. And so lucky he doesn't have any identifiable deficits at this time! Ok back to sleep!
9 hours ago via mobile
Taking him in for a CT scan in a few. Pain is 7/10, but just got some codeine. He is thankful the CT is faster and quieter than MRI.
5 hours ago via mobile
Charles Horn is back from a quick CT scan. He's snuggled back in nicely and got an ice pack for his jaw. Pain is still moderate, just waiting for the codeine to kick in and trying to get some more sleep. He is anxious to get out of here! :) Hoping he can continue sleeping well and that the next day goes well! He said he's ready to try getting up, since he wants to get out of here ASAP. Will keep you updated! He wants you all to know he appreciates everything and thanks for the kind words.
4 hours ago
he's pretty miserable but the pain meds are hopefully starting to kick in. the nurse said she'd leave him alone for a bit, so I'm going to try to get some sleep too :) (Charles Horn)
about an hour ago
Poor boy is in lots of pain. Ate a little scrambled eggs. Or should I say swallowed. Got some more pain meds but they haven't helped yet. He's hot but his temp read OK. His right eye is a bit droopy, but he can open it OK when he tries, he said it's just easier not to, so most of the time he opens just his left eye or mostly the left and a little of the right. The whole right side of his head is in a LOT of pain.... (Charles Horn)
about an hour ago
Oh, Dr. Al-Mefty....
His nurse Jean was nice, said she would leave him alone for a bit and let him rest and help the pain subside a bit. That only lasted maybe a half hour and Dr. Al-Mefty showed up, and yeah we'd heard he likes to get his patients up and moving asap. He was all like "WAKE UP WAKE UP WAKE UP! WHAT ARE YOU DOING! GET UP! What is all this?! (Pointing to the catheter), get this out! Get him up, walk around! Get up get up! You got to go home, get up!" Haha, he's a crazy guy. That was all with a smile on his face, not that he was being a jerk or anything. They have him in to be moved to the regular floor once a bed opens up, and they want to get him up and walking around. The nurse was just shaking her head about the doctor, and we were just laughing. He just kept saying "You're OK, we're done, you're good you're good, get up!" Oh goodness :) He is pushy and stubborn, but he's a nice guy, he's quite likeable even though he's a bit weird and not the most personable. He does have a little of the cute little old man about him, I think because he smiles a lot. So Charlie is sitting up a bit, catheter gone, watching some Megamind. Jean said she'd leave him alone for a little bit before she tried making him get up, since the doctor left :) Charlie's mom should be here in a little while. Maybe he WILL be going home tomorrow... we'll see!
It prob also didn't help that I was also trying to sleep, had my hood of my sweater up over my head and over my eyes and the blanket over my head... it's cloudy out but it's bright! I could definitely still use some more sleep! Oh well!
And Charlie says, "don't drop the banana."
It prob also didn't help that I was also trying to sleep, had my hood of my sweater up over my head and over my eyes and the blanket over my head... it's cloudy out but it's bright! I could definitely still use some more sleep! Oh well!
And Charlie says, "don't drop the banana."
the next morning
Shift Change! Peppy Doctor (not sure her name, but oh is she peppy! saw her before the surgery too) came in and did the regular tests, said he did great. Met the new nurse. She left us with a menu, so I guess he can have breakfast! We picked out some soft stuff, hoping the nurse will call it in for him rather than making me do it... hey I'm not supposed to be here, that's a good excuse, right? Of course I will if I need to, but I don't think there's any rush to attempt to eat anything because his pain is pretty considerable at this time and he's definitely going to need some more meds and to get it down a lot to even THINK about trying to eat something! That is going to SUCK! Poor thing. Just got him some fresh ice... things are a bit hectic around here at the moment, the nurse isn't here... shift change and rounds and what not... the night nurse Jody was really nice, I think Charles is sad to see her go, he liked her. The new nurse said that he'd be getting his stuff taken out throughout this morning.. the catheter, the arterial line, etc. She also said they'd be getting him up. He's going to push through it I'm sure because he wants to get out of here as soon as possible. He's definitely worse for the wear though... he seems worse than last time, the pain is much more of a problem it seems to me at least. But it sounds like he's fallen back asleep now, so let's hope that no one comes to bother him for a little while! He's been hot, so I fanned him off a bit, and put my cold hands on his face. I'm sure the fresh ice will help with that issue as well. No other interesting news to report. Will let you know when there is :)
~Sue
~Sue
Tuesday, September 6, 2011
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!!! :)
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!!! :)
In Neuro-ICU
So, I don't know if anyone actually reads this... if you are and you're not on facebook, please just friend me for detailed updates! I'll maybe update more in length here at some point, but right now that's not going to happen and it's WAY easier to just update on facebook rather than here....
Surgery is now
My aplogies for not updating this summer!!!
It's Tuesday September 6th, 2011 and Charles is currently almost through his surgery. He is having surgery to attempt to remove the tumor, or at least debulk it as much as possible. I will add additional details later. I have notes from his previous appointments for people who like the details and I hope to get them up soon, but again, I've been saying that for months! :)
Please keep Charles in your thoughts and prayers!
Much Love,
Sue W.
It's Tuesday September 6th, 2011 and Charles is currently almost through his surgery. He is having surgery to attempt to remove the tumor, or at least debulk it as much as possible. I will add additional details later. I have notes from his previous appointments for people who like the details and I hope to get them up soon, but again, I've been saying that for months! :)
Please keep Charles in your thoughts and prayers!
Much Love,
Sue W.
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