Today I met with both the nurse practioner and the neurosurgeon. They looked at my wound and then the neurosurgeon looked at my phone pictures of my wound. They determined that I do NOT need surgery to close it up. This is a huge relief to me. I was trying to be positive, but the possibility of another surgery was really bumming me out. Now, I can be my normal optimistic self again.
Instead of surgery, I have to clean the wound and pack it twice a day. Now when I say "I," it will actually be Aaron instead of me. It is a little hard for me to do it myself since I would have to look into a mirror and do everything backwards. It shouldn't be too tough for Aaron and throughout this, he hasn't seemed grossed out yet. I suppose this will be the real test. I'm not sure how long this will be, but the wound has to heal up before Aaron is done. It could be one week or more....
The neurosurgeon hasn't seen me since I left the hospital. He asked me how my energy was (good) and specifically if I had been reading or not (no). I told him I was going to force myself to read but I accidently got the book in Spanish. He said I shouldn't force it. I told him that force was a bad word. I would obviously stop if I had a headache or it became too hard, but I wanted to start getting acclimated to reading because I would have to do a lot of it at work. He seemed to understand and was okay with my explanation. Before he left, he commented on how good my facial muscles were doing. I agreed with him. It is nice to know he is happy with the result.
I was dreading this visit today, but it turned out okay. I have more work to do regarding my wound, but it is okay, because I don't need surgery!
Friday, October 24, 2014
Thursday, October 23, 2014
Not So Good News
Yesterday I went back to neurosurgery. I was super excited because my wound was looking great compared to last week. It wasn't weeping anymore and the redness had improved. I was ready to get the stitches out and move on. When I saw the nurse practioner, so agreed that things looked better, but she still wasn't happy with them. Because it had been three weeks, she took out the stitches, but she didn't want to. You see, there is an area right behind my ear where the edges of the skin is not together. She measured it, and the area is 2cm long and 0.5cm wide.
Because this spot, I have two days. I have two days for my body to turn things around. If not, I have to go back into surgery for a deep cleaning of the wound. This would be an overnight stay in the hospital and everything. I go back in tomorrow to see the nurse practioner and the surgeon. I realize I am pretty helpless in this situation, but I REALLY don't want to go back into surgery. The surgery wouldn't go deep within my brain, but I would have to do all the painful IV stuff and be intubated and stay in the hospital. That would not be fun at all.
I am telling myself that it could be worse. The outcome of the first surgery was great and left me with a normal face. If I have to deal with a little wound issue, well so be it. I can deal with that, it is a short term problem that can be fixed. I think I am a little more miffed because things were going so good I expected smooth sailing to the finish line. I should have known better. That is never the case.
Because this spot, I have two days. I have two days for my body to turn things around. If not, I have to go back into surgery for a deep cleaning of the wound. This would be an overnight stay in the hospital and everything. I go back in tomorrow to see the nurse practioner and the surgeon. I realize I am pretty helpless in this situation, but I REALLY don't want to go back into surgery. The surgery wouldn't go deep within my brain, but I would have to do all the painful IV stuff and be intubated and stay in the hospital. That would not be fun at all.
I am telling myself that it could be worse. The outcome of the first surgery was great and left me with a normal face. If I have to deal with a little wound issue, well so be it. I can deal with that, it is a short term problem that can be fixed. I think I am a little more miffed because things were going so good I expected smooth sailing to the finish line. I should have known better. That is never the case.
Tuesday, October 21, 2014
A Lesson in Patience
Yesterday went pretty well. The pace of life was definitely slower because of a little girl named Frances. It all started with the car. She knows I cannot lift her and that it is her job to climb into the car seat. After dropping off Henry, I had a couple errands to do before going to my parents house. Unfortunately for me, these were the type of errands that required me to leave the car. It seemed like each time we got back to the car, Franny was slower and slower getting into the car seat. There was one time I just gave up trying to convince her to get into the car seat. I shut the back door and got into the front seat and told her to tell me when she was ready to get into the car seat. After about 10 minutes playing all over the car, she was finally ready.
We got to my parent's house a little late and had to skip the morning walk because Ruby was already asleep (don't worry, we made up for it later). After lunch time, it was time to try to get Frances to nap. At home she sleeps in a crib and here at my parents, she is in a bed. A bed that you can climb out of. I laid with her for about 20 minutes, and after repeated asking to wake up and get out of bed, I conceded.
After non-nap time, Franny got a little play time with Ruby and then it was time to get Henry at school. After cajoling her into the car seat once more time, we picked up Henry and then...Franny fell asleep in the car. I was stuck. I couldn't lift Franny and I didn't especially want to wake her up, so I let Henry go inside my parents house and I stayed with her in the car, just doing nothing while she slept.
Once she woke up we went inside and pretty soon it was time for dinner. I was going to grab some Papa Murphy's but Fran started crying and saying that she wanted to come with me. I didn't want to battle her in the car anymore, so I had my mom go instead.
After dinner...bedtime. I don't need to go over everything, but I had to lay in bed with her for 45 minutes before she finally fell asleep. I sure missed the crib where she is trapped and can't get out even if she wanted to.
So really, yesterday was all about Frances.
We got to my parent's house a little late and had to skip the morning walk because Ruby was already asleep (don't worry, we made up for it later). After lunch time, it was time to try to get Frances to nap. At home she sleeps in a crib and here at my parents, she is in a bed. A bed that you can climb out of. I laid with her for about 20 minutes, and after repeated asking to wake up and get out of bed, I conceded.
After non-nap time, Franny got a little play time with Ruby and then it was time to get Henry at school. After cajoling her into the car seat once more time, we picked up Henry and then...Franny fell asleep in the car. I was stuck. I couldn't lift Franny and I didn't especially want to wake her up, so I let Henry go inside my parents house and I stayed with her in the car, just doing nothing while she slept.
Once she woke up we went inside and pretty soon it was time for dinner. I was going to grab some Papa Murphy's but Fran started crying and saying that she wanted to come with me. I didn't want to battle her in the car anymore, so I had my mom go instead.
After dinner...bedtime. I don't need to go over everything, but I had to lay in bed with her for 45 minutes before she finally fell asleep. I sure missed the crib where she is trapped and can't get out even if she wanted to.
So really, yesterday was all about Frances.
Monday, October 20, 2014
Today
I have a whole list of things to do and one of them is to update the blog. I thought I should do that now.
So, Aaron is officially out the door and on his way to the World Series! He said it was weird to leave us. Weird, but probably good for him. He deserves a break. Henry has a late start at school today so we are just all hanging out at home right now. To be honest, it is a little weird without Aaron here. I feel a little bit like I am rolling the dice and hoping I won't get a seven (or what ever it is that you don't want when you play craps). With all the things I can do, I still do have limitations. Already this morning I had to go downstairs because Henry and Franny were playing together and Franny started crying. It was only because Henry didn't want to give Franny a toy and she got upset, so no big deal. Still, I picture either Franny or Henry hurting themselves and me being useless. For that reason and others, I am headed to my parents after Henry goes to school.
I hope I don't need any help, but if I do, my mom is there (my dad is on a business trip). Well, actually, I will probably need her help in the mornings, which brings me to an update. I think I'm doing pretty good. The stitches are looking better and better, but are itching like crazy. I am SO ready for them to be out. My headaches are still there, but are also getting better. Mornings are still the hardest for me. As soon as I can break the headache in the morning, I am good to go, but before that I am pretty useless. Two days ago I went shopping by myself at a fabric store. That COMPLETELY exhausted me. It showed me that maybe I'm not as normal as I think I am. It made me think I need a game plan for recovery. I need a slow introduction to normal life with more and more activity during the day. Watching the kids without Aaron is probably a good step.
I'll let everyone know how it goes
Laura
PS Henry wanted to write some stuff:
mom fart from henry henry henryhenry henry
So, Aaron is officially out the door and on his way to the World Series! He said it was weird to leave us. Weird, but probably good for him. He deserves a break. Henry has a late start at school today so we are just all hanging out at home right now. To be honest, it is a little weird without Aaron here. I feel a little bit like I am rolling the dice and hoping I won't get a seven (or what ever it is that you don't want when you play craps). With all the things I can do, I still do have limitations. Already this morning I had to go downstairs because Henry and Franny were playing together and Franny started crying. It was only because Henry didn't want to give Franny a toy and she got upset, so no big deal. Still, I picture either Franny or Henry hurting themselves and me being useless. For that reason and others, I am headed to my parents after Henry goes to school.
I hope I don't need any help, but if I do, my mom is there (my dad is on a business trip). Well, actually, I will probably need her help in the mornings, which brings me to an update. I think I'm doing pretty good. The stitches are looking better and better, but are itching like crazy. I am SO ready for them to be out. My headaches are still there, but are also getting better. Mornings are still the hardest for me. As soon as I can break the headache in the morning, I am good to go, but before that I am pretty useless. Two days ago I went shopping by myself at a fabric store. That COMPLETELY exhausted me. It showed me that maybe I'm not as normal as I think I am. It made me think I need a game plan for recovery. I need a slow introduction to normal life with more and more activity during the day. Watching the kids without Aaron is probably a good step.
I'll let everyone know how it goes
Laura
PS Henry wanted to write some stuff:
mom fart from henry henry henryhenry henry
Friday, October 17, 2014
Aaron's Perspective
Aaron wrote a great post on his blog about me and the Royals. Everyone should check it out.
http://www.royalsauthority.com/brain-tumor-playoffs/
I always enjoy it when Aaron writes (even if I skim over the baseball statistic parts). Aaron is a good writer, but he is an even better husband. This whole thing has gone pretty smooth and a lot of it is because of him. With all the things I cannot do, he has never even hesitated taking over the responsibilities. He has been loving, selfless and amazing. If I could give him every World Series game I would, he deserves it. I love you Aaron!
http://www.royalsauthority.com/brain-tumor-playoffs/
I always enjoy it when Aaron writes (even if I skim over the baseball statistic parts). Aaron is a good writer, but he is an even better husband. This whole thing has gone pretty smooth and a lot of it is because of him. With all the things I cannot do, he has never even hesitated taking over the responsibilities. He has been loving, selfless and amazing. If I could give him every World Series game I would, he deserves it. I love you Aaron!
Thursday, October 16, 2014
The Scar
Had a few people asking about Laura's incision/stitches/scar, so those who want to see it can click through. It's not so bad, but also not for the extra squeamish!
Stiches are.......
mostly still there.
I went to my two week post-surgery appointment yesterday. The usual plan is to take out all of the stitches. I was excited to get them out. I wanted to be able to sleep on that side again and for them not to irritate me.
Since the surgery, the would continues to have a little dried scabbing. There is not oozing that I notice, but my hair gets a little clumpy and the wound is not completely dry. Because of this, the stitches are to remain in 1 more week and I am going to start some antibiotics just to make sure there is no starting skin infection. Although disappointed, I agree with the logic and will keep these things in my head for one more week. She did take the stitches out of my abdomen. It's a small victory.
As far as my restrictions, the only thing that has changed is that I now can drive! It's nice to have some independence. I still can't bend with my head below my heart and I still can't lift 10 pounds. I guess this will be like this for about a month or so. I also specifically asked about running. The nurse practioner smiled a little when I asked that ( I guess not a common question). She said it would be a while (like a month or more), but that I can walk as much as I wanted. I didn't know there currently was a limit to the amount I am walking now.
I asked about return to work, she guessed about 6 weeks after surgery. I told her I was hoping for 4 weeks and she that might be possible, but we would just see.
As far as my headaches, they are getting better. I always have a headache when I wake up in the morning, and then it gets better throughout the day. The intensity of the headache from day to day is improving a little each day. That makes me happy. It makes me feel like I won't end up in chronic pain.
With my boredom, I am doing better. I am feeling more and more normal and with that, have the energy to do more normal things. I am still not a big fan of reading, but I am listening to an audio book and am loving that! Also, how can I be bored when the ROYALS ARE IN THE WORLD SERIES!!! It is fun to watch. We are going to work it out so Aaron gets to go to a game (party at Grandma and Grandpa's house).
All in all, things are going good but the stitches are still in my head.
I went to my two week post-surgery appointment yesterday. The usual plan is to take out all of the stitches. I was excited to get them out. I wanted to be able to sleep on that side again and for them not to irritate me.
Since the surgery, the would continues to have a little dried scabbing. There is not oozing that I notice, but my hair gets a little clumpy and the wound is not completely dry. Because of this, the stitches are to remain in 1 more week and I am going to start some antibiotics just to make sure there is no starting skin infection. Although disappointed, I agree with the logic and will keep these things in my head for one more week. She did take the stitches out of my abdomen. It's a small victory.
As far as my restrictions, the only thing that has changed is that I now can drive! It's nice to have some independence. I still can't bend with my head below my heart and I still can't lift 10 pounds. I guess this will be like this for about a month or so. I also specifically asked about running. The nurse practioner smiled a little when I asked that ( I guess not a common question). She said it would be a while (like a month or more), but that I can walk as much as I wanted. I didn't know there currently was a limit to the amount I am walking now.
I asked about return to work, she guessed about 6 weeks after surgery. I told her I was hoping for 4 weeks and she that might be possible, but we would just see.
As far as my headaches, they are getting better. I always have a headache when I wake up in the morning, and then it gets better throughout the day. The intensity of the headache from day to day is improving a little each day. That makes me happy. It makes me feel like I won't end up in chronic pain.
With my boredom, I am doing better. I am feeling more and more normal and with that, have the energy to do more normal things. I am still not a big fan of reading, but I am listening to an audio book and am loving that! Also, how can I be bored when the ROYALS ARE IN THE WORLD SERIES!!! It is fun to watch. We are going to work it out so Aaron gets to go to a game (party at Grandma and Grandpa's house).
All in all, things are going good but the stitches are still in my head.
Sunday, October 12, 2014
Headaches
I'm doing good, but today was a little hard. The last steroids I took was over 48 hours ago and this morning I woke up with a pretty bad piercing headache. I tried coffee and extra strength Tylenol, but it didn't help much.
Aaron was great and took the kids swimming while I just focused on getting better. The headache has been so bad today, I just took some Percocet. I'm less than two weeks out of brain surgery, I should expect to have a headache. It was just the last few days has been great and I was feeling like the road to recovery would be easy. It still might be, but days with headaches should be expected, especially when the steroids are weaned.
Baby steps, baby steps. I really am doing well. I have to remember this.
Aaron was great and took the kids swimming while I just focused on getting better. The headache has been so bad today, I just took some Percocet. I'm less than two weeks out of brain surgery, I should expect to have a headache. It was just the last few days has been great and I was feeling like the road to recovery would be easy. It still might be, but days with headaches should be expected, especially when the steroids are weaned.
Baby steps, baby steps. I really am doing well. I have to remember this.
Friday, October 10, 2014
Henry
Turns out, Henry is doing well, but he does think the scar is scary. I mean, look at that scar on me! Henry thinks I will be fine and if he gets worried, he will play Wii, well, at least that is his plan. When he is around, I keep the stitches covered, but that is it.
It is nice to know from an outsider that Henry is doing well.
Thursday, October 9, 2014
A Hard Day
I thought yesterday was going to be fun, but it was hard. Mainly, it was really boring.
It's really hard to figure out what to do with myself.
The morning started out great with some Mall walking and watching Frances and Ruby play. I was enjoying just observing life, living in the moment, watching the girls get happy, excited over and over again. Then the moment was gone. I came back home exhausted. Really, too exhausted to do anything, but just lay down and NOT sleep.
I've been weaning down on my steroids, and with the half life of the medication, I think the wean is in full effect. Also, I stopped taking the Percocet. Yesterday I was really achy in my neck and jaw. Even the lightest touch was tender. The other thing was that my asthma acted up a little. I'm sure my body was just loving the exhangenous (sp?) steroids and was sad to see it go. I had to start up my Flovent. Today I'm doing better with the achiness and the breathing, so hopefully things are getting better.
Last night also I felt like I was on the roller coaster that wouldn't stop. Every time I closed my eyes to go to bed, my body felt in motion. I was trying to ride it out, but I couldn't. Eventually I woke up Aaron and tried to get into a better position where the rocking would stop. And, eventually it did stop, but it wasn't fun. I didn't really sleep that well.
So now today is a new day. Most of the day yesterday was just waiting for time to continue. It's not a good living. I need to think about what I can do, and what I can control and try to actually enjoy this time.
Even though my head is in a fog, I still think clearly. I can write, I can plan. Pretty soon Aaron and I will be on our own for meals, maybe I need to start thinking about that. Also, I bet I can sew, right? I can knit most of the time now. I finished Frances' Halloween costume, but I still need to work on Henry's a.k.a. Shadow Link. I will have my mom bring some puzzles over and we will continue our walks. Maybe if I have a normal daily routine, then things will get better. I am going to try to start getting a daily routine. I will let everyone know how I do.
It's really hard to figure out what to do with myself.
The morning started out great with some Mall walking and watching Frances and Ruby play. I was enjoying just observing life, living in the moment, watching the girls get happy, excited over and over again. Then the moment was gone. I came back home exhausted. Really, too exhausted to do anything, but just lay down and NOT sleep.
I've been weaning down on my steroids, and with the half life of the medication, I think the wean is in full effect. Also, I stopped taking the Percocet. Yesterday I was really achy in my neck and jaw. Even the lightest touch was tender. The other thing was that my asthma acted up a little. I'm sure my body was just loving the exhangenous (sp?) steroids and was sad to see it go. I had to start up my Flovent. Today I'm doing better with the achiness and the breathing, so hopefully things are getting better.
Last night also I felt like I was on the roller coaster that wouldn't stop. Every time I closed my eyes to go to bed, my body felt in motion. I was trying to ride it out, but I couldn't. Eventually I woke up Aaron and tried to get into a better position where the rocking would stop. And, eventually it did stop, but it wasn't fun. I didn't really sleep that well.
So now today is a new day. Most of the day yesterday was just waiting for time to continue. It's not a good living. I need to think about what I can do, and what I can control and try to actually enjoy this time.
Even though my head is in a fog, I still think clearly. I can write, I can plan. Pretty soon Aaron and I will be on our own for meals, maybe I need to start thinking about that. Also, I bet I can sew, right? I can knit most of the time now. I finished Frances' Halloween costume, but I still need to work on Henry's a.k.a. Shadow Link. I will have my mom bring some puzzles over and we will continue our walks. Maybe if I have a normal daily routine, then things will get better. I am going to try to start getting a daily routine. I will let everyone know how I do.
Tuesday, October 7, 2014
1 Week Ago
Last week I was strapped down and unconscious and today I'm not! That is something good.
This morning I tried to sleep in, but Frances really wanted me to get up, so I got up on the couch at about 730 and then went back to sleep there until 945. I guess that's good, right? Also, last night was the first night I did NOT wake up in pain and need medication. That is another bonus.
With the healing, I have two types of headaches. The first is due to the incision and I can feel swelling and tightness where the stitches are. If I don't keep my head elevated enough, this can hurt quite a bit. The second type of pain is more deep and I think is related to increased intracranial pressure. If I cough, stand up too fast or walk a lot, I get a deep throbbing more on the left side of my head than anything. That takes a little more time to go away, but responds well with the pain medication.
Besides the headaches, I feel like I am a little in a dizzy fog. It's like I am at valley fair and there is one hour to go and the only ride to go on is the enterprise over and over, so that is what I do. Sometimes when I close my eyes, the room starts to spin (and sometimes it doesn't). My brain just needs to adjust with one vestibular nerve, and I have faith I will, it just will take time.
My tongue is still a little swollen, but it is MUCH better. I'm not limiting my food any more! Bring on the grub.
Tomorrow my mom and I start our official physical training. I am supposed to get out and walk at least 30 minutes a day. We have been doing this, but tomorrow, I will be a mall walker! Because my mom just got her hip replaced, she needs to walk too, so it is perfect. I'll let you know how it goes tomorrow.
Laura
This morning I tried to sleep in, but Frances really wanted me to get up, so I got up on the couch at about 730 and then went back to sleep there until 945. I guess that's good, right? Also, last night was the first night I did NOT wake up in pain and need medication. That is another bonus.
With the healing, I have two types of headaches. The first is due to the incision and I can feel swelling and tightness where the stitches are. If I don't keep my head elevated enough, this can hurt quite a bit. The second type of pain is more deep and I think is related to increased intracranial pressure. If I cough, stand up too fast or walk a lot, I get a deep throbbing more on the left side of my head than anything. That takes a little more time to go away, but responds well with the pain medication.
Besides the headaches, I feel like I am a little in a dizzy fog. It's like I am at valley fair and there is one hour to go and the only ride to go on is the enterprise over and over, so that is what I do. Sometimes when I close my eyes, the room starts to spin (and sometimes it doesn't). My brain just needs to adjust with one vestibular nerve, and I have faith I will, it just will take time.
My tongue is still a little swollen, but it is MUCH better. I'm not limiting my food any more! Bring on the grub.
Tomorrow my mom and I start our official physical training. I am supposed to get out and walk at least 30 minutes a day. We have been doing this, but tomorrow, I will be a mall walker! Because my mom just got her hip replaced, she needs to walk too, so it is perfect. I'll let you know how it goes tomorrow.
Laura
Monday, October 6, 2014
Pictures
So these are my scary pictures. The one above my writing is the one they took on 9/11. To orientate you, in the front you can see my eyeballs and then a little of my gray batter. In the back, you can see the cerebellum which is more layered then the other stuff. On right in the middle on the right side I the mass. It is about as big as my eyeball. It is pushing into the mid brain and pressing some of the fluid in a different place (the forth ventricle is an irregular triangle area). This is what I saw at first and scared me A LOT.
This is what they needed to do, and they did it and I am grateful.
My head hurts a little more today, but I think I am not sleeping as upright as I need to. Also, I am still weaning on the steroid. My big plan today is too take a shower. I think I can achieve it.
Sunday, October 5, 2014
Mental Toughness
Last night I slept well in my OWN bed. It was nice, and mostly normal (except for a 3am headache). This morning I had some visitors and then my family came over. My brother brought over an extremely complicated Lord of the Rings game then he, Renae and I played. Before starting this game, I was thinking how well I am healing and will hopefully soon go back to work.
Now that I finished the game, I know I still have a lot of healing to do.
It was the first time I had to mentally push myself. It was hard. The hardest part was tuning out things that were distracting, like kids playing in the background and side conversations. About half way through the game, I needed some more pain medications, but after I took it, I finished the game with my family, and well, we lost.
To be honest, at the end I was just doing what my brother told me to. I normally wouldn't have been so passive, but the exhaustion was rising. It will be a good barometer to see how far I have come.
After that I laid on the couch for an hour or so and now I feel back to normal. The Royals game starts in an hour and I have to get some walking in, so I am going to leave and do my job.
Next time I will put some before and after pictures up of my brain. I was afraid to put these up until I knew everything would be fine. I think it will now.
Now that I finished the game, I know I still have a lot of healing to do.
It was the first time I had to mentally push myself. It was hard. The hardest part was tuning out things that were distracting, like kids playing in the background and side conversations. About half way through the game, I needed some more pain medications, but after I took it, I finished the game with my family, and well, we lost.
To be honest, at the end I was just doing what my brother told me to. I normally wouldn't have been so passive, but the exhaustion was rising. It will be a good barometer to see how far I have come.
After that I laid on the couch for an hour or so and now I feel back to normal. The Royals game starts in an hour and I have to get some walking in, so I am going to leave and do my job.
Next time I will put some before and after pictures up of my brain. I was afraid to put these up until I knew everything would be fine. I think it will now.
Saturday, October 4, 2014
Day 4 Post-Op
I'm feeling pretty good. I have been evaluated by physical therapy am now safe to go to the bathroom by myself and walk in the hallway by myself. If I walk and turn my head, I feel a little unsteady, but that was it. I think I'll have lots of mall walking time with my mom when I get out.
I forgot to talked about removing the drain. After 2 days of having a drain set up to connect my CSF to the outside world, they thought the drainage was minimal and wanted to take it out. At first it was very red, but then it started looking like koolade( a good sign). That was a signal for it to be taken out. The nurse practioner cut the stitch holding the drain in place and then pulled the drain out. That didn't hurt at all. What hurt was she sterilized the area and put in stitch to close the hole where the drain came out. That hurt, but it was over quickly.
The wa the first step of my progress.
After the drain got pulled, I got to be a normal hospital room, not the ICU. This meant I could get up and use the bathroom and even walk around if I want to. It is really strange standing up after I had been laying down for 2 days. That and half of my vestibular system not working.
I have been a little more ache last night and today because they are decreasing my steroids. They had me on Decadron 10mg q 6hrs, and now I am on 4mg q 8 hours. I will just have to keep up with my pain medications to compensate for this.
Biggest news.....I'm home!
The doctor came in and asked if I wanted to leave on Monday. I said okay, but I was ready to go now. I was just getting bored there and I felt like I could do everything I needed to at home. The doctor's nurse practioner actually filled out the discharge planning the day before, so they were ready for me to leave.
I left the hospital around noon and Aaron got me set up on a couch and I snoozed there a little while. It feels really nice to be home, even if I am going to be a sloth.
I have occasional headaches, but my main issue is my tongue. It is healing and getting smaller, but I still don't trust myself with any sort of texture. I have this prescription mouthwash that is working, so I will keep doing that.
Now that I am home, Aaron doesn't have to split his life an two and he might actually stay awake for a whole Royals game. I might watch a little too. Should be fun to be normal for a little bit.
I'm just happy and grateful that things are going so well and that I have great friends and family. I imagined this being much worse than it truly was and I have everyone to thank.
Thank you,
I forgot to talked about removing the drain. After 2 days of having a drain set up to connect my CSF to the outside world, they thought the drainage was minimal and wanted to take it out. At first it was very red, but then it started looking like koolade( a good sign). That was a signal for it to be taken out. The nurse practioner cut the stitch holding the drain in place and then pulled the drain out. That didn't hurt at all. What hurt was she sterilized the area and put in stitch to close the hole where the drain came out. That hurt, but it was over quickly.
The wa the first step of my progress.
After the drain got pulled, I got to be a normal hospital room, not the ICU. This meant I could get up and use the bathroom and even walk around if I want to. It is really strange standing up after I had been laying down for 2 days. That and half of my vestibular system not working.
I have been a little more ache last night and today because they are decreasing my steroids. They had me on Decadron 10mg q 6hrs, and now I am on 4mg q 8 hours. I will just have to keep up with my pain medications to compensate for this.
Biggest news.....I'm home!
The doctor came in and asked if I wanted to leave on Monday. I said okay, but I was ready to go now. I was just getting bored there and I felt like I could do everything I needed to at home. The doctor's nurse practioner actually filled out the discharge planning the day before, so they were ready for me to leave.
I left the hospital around noon and Aaron got me set up on a couch and I snoozed there a little while. It feels really nice to be home, even if I am going to be a sloth.
I have occasional headaches, but my main issue is my tongue. It is healing and getting smaller, but I still don't trust myself with any sort of texture. I have this prescription mouthwash that is working, so I will keep doing that.
Now that I am home, Aaron doesn't have to split his life an two and he might actually stay awake for a whole Royals game. I might watch a little too. Should be fun to be normal for a little bit.
I'm just happy and grateful that things are going so well and that I have great friends and family. I imagined this being much worse than it truly was and I have everyone to thank.
Thank you,
Friday, October 3, 2014
3 days after surgery
I think things are going pretty good. The first few days were a little rough, but I feel like I have turned the corner to recovery.
Let me start with what I remember. I remember getting a dose of valium and being wheeled off to the MRI operating room. It did look a little different with metal panels on the walls. Then there were a lot of instruments. Then the anesthesiologist told me he was giving me the propofol and I remember nothing else about the surgery.
When I woke up after the surgery I was doing okay. I saw the anesthesiologist's face right in front of me talking to me. I could hear and understand everything, but my vision was really blurry. I mean like room spinning stuff. Then I felt my had being squeezed and it was Aaron. I was so happy to see him.
After I was done recovering they brought me to the ICU. At that time my head started hurting a lot and the medication wasn't coming as quickly as I anticipated and Aaron had to advocate for me a little. Later that night, I had a big episode of a headache and it felt like I was back in labor and delivery. I was writhing my legs and just repeating "please, please, please." That was my worst pain. After that it got better.
Also, it was during that night when I found out I had bad veins. They poked me over AND over again. I just kept my eyes shut and let them poke over and over. I really had no choice Not a restful night,
Oh, I should say the craziest thing that I did NOT anticipate is that my tongue has become swollen. It was really bad the first two nights, but now it is better (but not perfect). When they monitored my cranial nerves during surgery, they put a lot of electrodes IN my muscles, including my tongue. I can feel there was one on my chin, my forehead and on my scalp. I never had any problems breathing, but swallowing had become difficult. I guess about 25% of people get this outcome, but I never knew about it. Right now my tongue is slightly bigger than normal, tender and is starting to scab.
The last night of my ICU experiences, I had a peripheral IV that infiltrated. The problem with this is the liquid going in was a high dose of sodium it was causing pain and could cause permanent damage. So my nurse removed the IV, gave me shots around the infiltration site and told me to keep it elevated and put an ice pack on it as much as I could. I have been doing this and it helps.
Really though, my arms and hand are so bruised and scabbed, it is scary. Right now I have one peripheral IV that I am not really using. I am drinking all the fluid I need, I am taking all of my medications orally, so it is just there for precautions.
I will keep you updated when I know more.
Laura
Let me start with what I remember. I remember getting a dose of valium and being wheeled off to the MRI operating room. It did look a little different with metal panels on the walls. Then there were a lot of instruments. Then the anesthesiologist told me he was giving me the propofol and I remember nothing else about the surgery.
When I woke up after the surgery I was doing okay. I saw the anesthesiologist's face right in front of me talking to me. I could hear and understand everything, but my vision was really blurry. I mean like room spinning stuff. Then I felt my had being squeezed and it was Aaron. I was so happy to see him.
After I was done recovering they brought me to the ICU. At that time my head started hurting a lot and the medication wasn't coming as quickly as I anticipated and Aaron had to advocate for me a little. Later that night, I had a big episode of a headache and it felt like I was back in labor and delivery. I was writhing my legs and just repeating "please, please, please." That was my worst pain. After that it got better.
Also, it was during that night when I found out I had bad veins. They poked me over AND over again. I just kept my eyes shut and let them poke over and over. I really had no choice Not a restful night,
Oh, I should say the craziest thing that I did NOT anticipate is that my tongue has become swollen. It was really bad the first two nights, but now it is better (but not perfect). When they monitored my cranial nerves during surgery, they put a lot of electrodes IN my muscles, including my tongue. I can feel there was one on my chin, my forehead and on my scalp. I never had any problems breathing, but swallowing had become difficult. I guess about 25% of people get this outcome, but I never knew about it. Right now my tongue is slightly bigger than normal, tender and is starting to scab.
The last night of my ICU experiences, I had a peripheral IV that infiltrated. The problem with this is the liquid going in was a high dose of sodium it was causing pain and could cause permanent damage. So my nurse removed the IV, gave me shots around the infiltration site and told me to keep it elevated and put an ice pack on it as much as I could. I have been doing this and it helps.
Really though, my arms and hand are so bruised and scabbed, it is scary. Right now I have one peripheral IV that I am not really using. I am drinking all the fluid I need, I am taking all of my medications orally, so it is just there for precautions.
I will keep you updated when I know more.
Laura
Wednesday, October 1, 2014
Surgery Day
Aaron here. The short version: As far as we can tell at this point, surgery was an unqualified success and Laura is recovering as well as we could have hoped. She immediately had muscle movement on the right side of her face, which was the thing she was most worried about.
The long version:
Almost as soon as we told him about the acoustic neuroma, my friend Ben offered to fly in from Chicago just to be with me for the day of surgery and told me to think about it. My initial thought was that it was too much for him to do, and that I would be OK, and thought I would tell him he did not need to. But the more I thought about it, the nicer it seemed, and though I almost felt guilty accepting, I ended up saying he should come. As the surgery got closer, the thought that Ben was going to be there with me became more and more comforting. Dean, Val, and Renae all had various kid duties the morning of the surgery, so right off the bat when Laura went to surgery I would have been alone for a bit if not for Ben, and he knew first-hand how miserable it can be to have to wait by yourself when your loved one heads off to surgery. Him coming just to sit with me all day was gigantically comforting and distracting in the best way, and it may be the kindest thing anyone has ever done for me.
Laura and I both actually slept pretty well the night before surgery, though we hadn't been sleeping great since the diagnosis. I know I was just relieved that it was finally here, and even as scary as the surgery was, knowing it was finally time was in some ways more tolerable than just waiting and worrying. Laura, Ben (who had flown in the evening before), and I woke up around 5:15 and got ready. Dean and Val came over to be with the still sleeping kids at 5:45, and we headed to the hospital, where we arrived around 6:15. We went to our first waiting room of the day and Laura had a brief meeting with someone, and I really don't even know what that meeting was. Just checking in basically I guess. Then we moved to our second waiting room in the pre-op area. They took just Laura back for about 45 minutes before calling Ben and me back to see her. She had had some consults with the doc who would be doing all the nerve monitoring plus the neurosurgeon. Right away they said surgery, scheduled for 8:30, would be delayed due to a doctor's meeting going long, so we just hung out in that room until around 9:10. Laura was a little anxious but in good spirits and joking with the nurses. I felt a little ill from nerves for a minute when the anesthesiologist came in to go over with her what all he was going to do. Then everyone and everything was finally ready for her in the special MRI operating room, so we said our goodbyes and Ben and I headed for our third waiting room where we would spend most of the day.
Renae joined us at 9:30, and I felt pretty good as we camped out there for the next eight and a half hours. I don't think that would have been the case without Ben and Renae there. Sometimes my mind would try to picture what Laura was going through and get me scared, but most of the time I was just enjoying their company. I was also happy to be distracted by reading all the updates online about the Royals playoff game to be played that night. We got occasional surgery updates from the waiting room receptionists. The first one came at 11:00, saying that the actual surgery itself had just started, which seemed really late to me, but I guess was just the normal progression after the long process of anesthesia and nerve monitoring electrodes being placed in a number of spots. From there the updates became very general, that "everything was going fine." By around 2:00 or 2:30 I was a little antsy from the lack of any specific updates even though I knew that meant things were probably going smoothly. Then around 3:00 came a better update that the surgeon thought he was done and would soon be doing the MRI to make sure he really was. At 4:30, the surgeon himself came to talk to us and brought a print-out showing the pre- and post-op MRIs, which he stressed was for Laura because he knew she'd want to see it. Things had gone to plan, and though Laura was still under at this point, they could tell the muscle movement nerve was responsive. Relief!
Renae had to leave for kid duty at 5:30, so she never did see Laura the day of surgery, but I was sure glad to have her there. I was allowed into the recovery room to see her at 5:45, and I had no idea what to expect as far as how she'd look, but she smiled at me right away and I told her the right side of her face was smiling too and she was obviously thrilled, even through the narcotic fog. There was gauze covering her head so there was no shocking wound to see. A drain is staying in her head for a few days, but the gauze covered that too. I was relieved how good she looked so soon after such major surgery. We got to grin at each other and hold hands for a few minutes, and I really don't remember what we talked about. She was in some pain, and requested more meds, which helped quickly. Then the recovery room nurse got word that the neuro ICU was ready for her, so I headed back to the waiting room to gather Ben and our stuff so we could head to yet another waiting room.
I should have known better, but I was expecting this step to go quickly and that I'd see her again soon in the ICU, but of course there was another longish wait before Ben and I both got to see her at 7:00. She was in a lot of head pain at this point, which was tough to see, and she was saying things like, "Why won't they give me pain meds?" though she had some in her system and the nurses were hurrying to get her more. Each dose of meds takes effect remarkably quickly, so there's fast relief when she needs more. After she felt a little better she asked if the Royals game had started yet! I couldn't believe it, but it told me a lot about how together she was. I laughed and told her I wasn't too worried about it, but that it started in 10 minutes. They wanted to get her into a gown so kicked us out at 7:15. I decided I'd wait to see her one more time before heading to Dean and Val's to get the kids and go home. We saw her again roughly 8:00--8:15 and she said multiple times, "The meds are managing my pain."
Relieved and drained, Ben and I headed for the car after 14 hours at the hospital. We gathered up the kids, neither of whom had slept a wink, and got them both in bed by 9:30. As if I hadn't had a long enough day, I couldn't wait to start watching the Royals game, which I'd avoided hearing anything about, from the beginning. Of course it turned out to be the craziest game ever and five hours long, though I zipped through it in three thanks to fast forwarding. Royals win! Laura doing as well as we could have hoped. Not a day I'll soon forget.
The long version:
Almost as soon as we told him about the acoustic neuroma, my friend Ben offered to fly in from Chicago just to be with me for the day of surgery and told me to think about it. My initial thought was that it was too much for him to do, and that I would be OK, and thought I would tell him he did not need to. But the more I thought about it, the nicer it seemed, and though I almost felt guilty accepting, I ended up saying he should come. As the surgery got closer, the thought that Ben was going to be there with me became more and more comforting. Dean, Val, and Renae all had various kid duties the morning of the surgery, so right off the bat when Laura went to surgery I would have been alone for a bit if not for Ben, and he knew first-hand how miserable it can be to have to wait by yourself when your loved one heads off to surgery. Him coming just to sit with me all day was gigantically comforting and distracting in the best way, and it may be the kindest thing anyone has ever done for me.
Laura and I both actually slept pretty well the night before surgery, though we hadn't been sleeping great since the diagnosis. I know I was just relieved that it was finally here, and even as scary as the surgery was, knowing it was finally time was in some ways more tolerable than just waiting and worrying. Laura, Ben (who had flown in the evening before), and I woke up around 5:15 and got ready. Dean and Val came over to be with the still sleeping kids at 5:45, and we headed to the hospital, where we arrived around 6:15. We went to our first waiting room of the day and Laura had a brief meeting with someone, and I really don't even know what that meeting was. Just checking in basically I guess. Then we moved to our second waiting room in the pre-op area. They took just Laura back for about 45 minutes before calling Ben and me back to see her. She had had some consults with the doc who would be doing all the nerve monitoring plus the neurosurgeon. Right away they said surgery, scheduled for 8:30, would be delayed due to a doctor's meeting going long, so we just hung out in that room until around 9:10. Laura was a little anxious but in good spirits and joking with the nurses. I felt a little ill from nerves for a minute when the anesthesiologist came in to go over with her what all he was going to do. Then everyone and everything was finally ready for her in the special MRI operating room, so we said our goodbyes and Ben and I headed for our third waiting room where we would spend most of the day.
Renae joined us at 9:30, and I felt pretty good as we camped out there for the next eight and a half hours. I don't think that would have been the case without Ben and Renae there. Sometimes my mind would try to picture what Laura was going through and get me scared, but most of the time I was just enjoying their company. I was also happy to be distracted by reading all the updates online about the Royals playoff game to be played that night. We got occasional surgery updates from the waiting room receptionists. The first one came at 11:00, saying that the actual surgery itself had just started, which seemed really late to me, but I guess was just the normal progression after the long process of anesthesia and nerve monitoring electrodes being placed in a number of spots. From there the updates became very general, that "everything was going fine." By around 2:00 or 2:30 I was a little antsy from the lack of any specific updates even though I knew that meant things were probably going smoothly. Then around 3:00 came a better update that the surgeon thought he was done and would soon be doing the MRI to make sure he really was. At 4:30, the surgeon himself came to talk to us and brought a print-out showing the pre- and post-op MRIs, which he stressed was for Laura because he knew she'd want to see it. Things had gone to plan, and though Laura was still under at this point, they could tell the muscle movement nerve was responsive. Relief!
Renae had to leave for kid duty at 5:30, so she never did see Laura the day of surgery, but I was sure glad to have her there. I was allowed into the recovery room to see her at 5:45, and I had no idea what to expect as far as how she'd look, but she smiled at me right away and I told her the right side of her face was smiling too and she was obviously thrilled, even through the narcotic fog. There was gauze covering her head so there was no shocking wound to see. A drain is staying in her head for a few days, but the gauze covered that too. I was relieved how good she looked so soon after such major surgery. We got to grin at each other and hold hands for a few minutes, and I really don't remember what we talked about. She was in some pain, and requested more meds, which helped quickly. Then the recovery room nurse got word that the neuro ICU was ready for her, so I headed back to the waiting room to gather Ben and our stuff so we could head to yet another waiting room.
I should have known better, but I was expecting this step to go quickly and that I'd see her again soon in the ICU, but of course there was another longish wait before Ben and I both got to see her at 7:00. She was in a lot of head pain at this point, which was tough to see, and she was saying things like, "Why won't they give me pain meds?" though she had some in her system and the nurses were hurrying to get her more. Each dose of meds takes effect remarkably quickly, so there's fast relief when she needs more. After she felt a little better she asked if the Royals game had started yet! I couldn't believe it, but it told me a lot about how together she was. I laughed and told her I wasn't too worried about it, but that it started in 10 minutes. They wanted to get her into a gown so kicked us out at 7:15. I decided I'd wait to see her one more time before heading to Dean and Val's to get the kids and go home. We saw her again roughly 8:00--8:15 and she said multiple times, "The meds are managing my pain."
Relieved and drained, Ben and I headed for the car after 14 hours at the hospital. We gathered up the kids, neither of whom had slept a wink, and got them both in bed by 9:30. As if I hadn't had a long enough day, I couldn't wait to start watching the Royals game, which I'd avoided hearing anything about, from the beginning. Of course it turned out to be the craziest game ever and five hours long, though I zipped through it in three thanks to fast forwarding. Royals win! Laura doing as well as we could have hoped. Not a day I'll soon forget.
Subscribe to:
Posts (Atom)