Steph is excited to be home. Her mom has been taking the kids for sleepovers at night but they come by for visits during the day. Steph is so happy to see them and she visits as much as she can but she gets so dizzy with her eyes open that it makes it hard.
She has been fighting headaches and nausea since coming home. One of her pain meds she cant take because it compounds her dizziness pretty heavily. After taking it she said her head just spins and nothing helps. The other makes her jittery and anxious so it is hard to fall asleep when she takes it. She skipped a round of meds at 4 am partly because of feeling ok and partly because it is hard to fall asleep after taking it.
I am trying to have her watch more tv and sit up. It really makes her sick to do so. She is walking a little but mostly just when she has to go the bathroom.
I can't tell if she is feeling less pain or if she is figuring out how to handle the pain because she hates taking taking the meds due to how they make her feel.
She is eating and drinking very little still. The nausea makes it hard to eat very much and she still gets alot of pain just trying to chew.
She seems to be getting a little better each day so hopefully that continues.
Sunday, January 20, 2013
Friday, January 18, 2013
Friday
Steph was doing pretty good this morning. Pain in check and no nausea. Then I took her for a little walk and she took a shower. After her shower she got really sick. The headache also started to return. She was mostly sleeping or trying to sleep all day. If her head got better then she felt like throwing up. Which she did only once while the nurse was trying to talk to us about what time we thought we would leave. That was about 11 or Noon. Even with alternating pain meds she was really uncomfortable/dizzy.
I was expecting her to be a lot better by the time they send a patient like her home. The doctors all said that she will be dizzy and sick when she came home but I was thinking she would be able to function. If we do anything it is so debilitating to the point that if feels like the workout wasn't worth it. She laid in bed today writhing in pain from 9ish to 4 after one lap around the nurses station and a shower. That doesn't feel like she is progressing at all. It's depressing. She was doing so well on Wednesday. She deserves another Wednesday.
She slept for a little in the afternoon and woke up at 3:50 for her meds. She said she felt good enough to come home after we talked about maybe just staying one more night. I asked the nurse if she thought Steph was good enough to come home. The nurse said that there were a couple other people that had that same surgery that went home today feeling just like Steph, and that it was a pretty normal condition for Steph to be in from her experience. Steph and I decided that she could be sick at home but at least she was home.
On the plus side, now Steph can be just a few feet away on the couch while I make meals. Now I don't have to worry about leaving her while she isn't feeling good to go all the way to the cafeteria for meals. I skipped a bunch of meals this week because she just wasn't doing well enough to leave her alone. I should have brought more granola bars! if I did go get a meal it had to be when there wasn't any meds due, because they would often forget and let her go without for a little while. I had to also make sure that I had already fed Steph. She couldn't feed herself and I don't know if the nurses do, or have time to do, that kind of thing. I didn't feel like I could just leave her with the nurses. They weren't that involved and Steph probably wouldn't ask for help if she needed it. If she was going to throw up there is no way the nurse would have made it in time to hand her the bag. Little things like that kept me from leaving her alone. They probably just didn't worry about her as much since I was there all the time. Shot myself in the foot on that one.
We made it home at about 5. The kids were so happy to see her. They made some get well posters with grandma that were hanging around the house. They were so sweet and gentle with her. They would grab her hand and hold it or rub her hand on their cheek.
Steph is happy to be home but she is pretty beat up from all the driving. She describes the pain in her head as a thousand pounds of pressure behind her ear and around her forehead. I wish there was something better we could do but the Doctors all said the best thing is just to keep getting her up and eventually the brain will start figuring things out and the left side will compensate.
The docs said that from now on she will still get more dizzy than normal when she does certain things like stand up to fast or spin around to look at something. Dr. Reichman, who had this same surgery when he was younger, also said that when it is dark it will really give Steph vertigo. Before the surgery she mentioned that when she would wake up in the middle of the night to check on the kids she would often stumble or have to grab the wall to balance herself. She didn't realize why until Dr Reichman mentioned that. She has already been dealing with a few of the side effects since the tumor was effecting the nerves that control those things.
The long term effects of being deaf on the left side is that she won't be able to tell what direction sounds are coming from without a special kind of hearing aid. On Thursday she asked me why she could hear people talking outside her hospital window. She was laying on the bed with her eyes closed with her left (good) ear facing the window. I told her that the nurses were talking outside her door, that was on her right. It was a surprise to her how she could really not tell where the sound was coming from. She also has a hard time now picking certain noises out of a noisy room. Like one person talking to her in a group of noisy people. I think birthday parties are going to be overwhelming at first. She was already having trouble talking to people in that situation when she still had some hearing on the right. She is tough though and will figure it out. I told her I would make shirts that say "speak up into my left ear" but she didn't want any.
I was expecting her to be a lot better by the time they send a patient like her home. The doctors all said that she will be dizzy and sick when she came home but I was thinking she would be able to function. If we do anything it is so debilitating to the point that if feels like the workout wasn't worth it. She laid in bed today writhing in pain from 9ish to 4 after one lap around the nurses station and a shower. That doesn't feel like she is progressing at all. It's depressing. She was doing so well on Wednesday. She deserves another Wednesday.
She slept for a little in the afternoon and woke up at 3:50 for her meds. She said she felt good enough to come home after we talked about maybe just staying one more night. I asked the nurse if she thought Steph was good enough to come home. The nurse said that there were a couple other people that had that same surgery that went home today feeling just like Steph, and that it was a pretty normal condition for Steph to be in from her experience. Steph and I decided that she could be sick at home but at least she was home.
On the plus side, now Steph can be just a few feet away on the couch while I make meals. Now I don't have to worry about leaving her while she isn't feeling good to go all the way to the cafeteria for meals. I skipped a bunch of meals this week because she just wasn't doing well enough to leave her alone. I should have brought more granola bars! if I did go get a meal it had to be when there wasn't any meds due, because they would often forget and let her go without for a little while. I had to also make sure that I had already fed Steph. She couldn't feed herself and I don't know if the nurses do, or have time to do, that kind of thing. I didn't feel like I could just leave her with the nurses. They weren't that involved and Steph probably wouldn't ask for help if she needed it. If she was going to throw up there is no way the nurse would have made it in time to hand her the bag. Little things like that kept me from leaving her alone. They probably just didn't worry about her as much since I was there all the time. Shot myself in the foot on that one.
We made it home at about 5. The kids were so happy to see her. They made some get well posters with grandma that were hanging around the house. They were so sweet and gentle with her. They would grab her hand and hold it or rub her hand on their cheek.
Steph is happy to be home but she is pretty beat up from all the driving. She describes the pain in her head as a thousand pounds of pressure behind her ear and around her forehead. I wish there was something better we could do but the Doctors all said the best thing is just to keep getting her up and eventually the brain will start figuring things out and the left side will compensate.
The docs said that from now on she will still get more dizzy than normal when she does certain things like stand up to fast or spin around to look at something. Dr. Reichman, who had this same surgery when he was younger, also said that when it is dark it will really give Steph vertigo. Before the surgery she mentioned that when she would wake up in the middle of the night to check on the kids she would often stumble or have to grab the wall to balance herself. She didn't realize why until Dr Reichman mentioned that. She has already been dealing with a few of the side effects since the tumor was effecting the nerves that control those things.
The long term effects of being deaf on the left side is that she won't be able to tell what direction sounds are coming from without a special kind of hearing aid. On Thursday she asked me why she could hear people talking outside her hospital window. She was laying on the bed with her eyes closed with her left (good) ear facing the window. I told her that the nurses were talking outside her door, that was on her right. It was a surprise to her how she could really not tell where the sound was coming from. She also has a hard time now picking certain noises out of a noisy room. Like one person talking to her in a group of noisy people. I think birthday parties are going to be overwhelming at first. She was already having trouble talking to people in that situation when she still had some hearing on the right. She is tough though and will figure it out. I told her I would make shirts that say "speak up into my left ear" but she didn't want any.
Thursday Night Friday AM
Steph did really well last night. She had some visitors and talked with them for a little bit. After she ate some dinner she was getting really tired so we took a short walk and she fell asleep. She was supposed to get pain meds at 2 am and the nurse didn't want to wake her up so she waited until 3:15. Steph's headache has started to come back. We just got her some more meds at 7:20 and she said it was helping a little. Enough to fall asleep.
She has been taking the pain meds every 4 hours. Some friends who had this same surgery suggested taking a different pain med in between. I asked the nurse about it and she said that should be fine and she will double check with the doctor. Hopefully that will make it so Steph doesn't jump back up to an 8. They ask her to rate her pain from 1 to 10. She is usually around 2-4. Yesterday she has said 9-10. This morning she said 8. I don't think she could sleep at 8 so things must be working, even if just a little.
When I was talking to the nurse I asked her if this was normal pain for this kind of surgery. She said with the few other patients she had they did have pain and dizzyness with nausea. I told her I was nervous to take Steph home if she was going to be feeling like an 8. Even towards the end of her 4 hours in between meds she starts to have more headache/pain. Hopefully the new pain med helps keep the pain down.
Steph tried to eat breakfast this morning but the omelet was a little to hard to chew. It was hurting her to chew it. The potato bits were not edible and she fell asleep before the milk could soften her cheerios. I don't dare wake her just to eat cheerios. While I was typing this she woke up and I asked her if she wanted the cheerios. She said "I want to go to sleep." I guess cheerios are to boring without sugar or honey for her to wake up for. She did eat a half of the cup of applesauce with her pain med so she should be ok.
Hopefully we don't need morphine today so we can come home. The nurse said they won't send her home if she has morphine in her system.
Dr Shelton came in just now. He asked her about her pain and she said 4-5. She still didn't want to eat the cheerios though. It looks like we will probably be coming home today.
I have been so worried about the pain Steph is going through that I forgot to mention that her face has had some slight paralysis on the right side. you can't really tell when talking to her but the nurses and doctors do test on her each day and night. She has to smile showing teeth, raise her eyebrows, close her eyes tightly, and scrunch her nose. I haven't told her this but the doctors quickly mention "slight paralysis" and tell her it's normal and should go back to normal. Her right eye brow doesn't raise as high. Her smile is just a little off on the right. The biggest thing I noticed is her right eye blinks slower than her left. Dr Mann told her that she may need eye drops and that we can just get over the counter ones when we get home if her lack of blinking gets worse. Don't mention it to her if you see her though. Even if it is to tell her that I am crazy and that you can't see a difference like I mentioned on the blog. She was really nervous about have a lazy face.
She has been taking the pain meds every 4 hours. Some friends who had this same surgery suggested taking a different pain med in between. I asked the nurse about it and she said that should be fine and she will double check with the doctor. Hopefully that will make it so Steph doesn't jump back up to an 8. They ask her to rate her pain from 1 to 10. She is usually around 2-4. Yesterday she has said 9-10. This morning she said 8. I don't think she could sleep at 8 so things must be working, even if just a little.
When I was talking to the nurse I asked her if this was normal pain for this kind of surgery. She said with the few other patients she had they did have pain and dizzyness with nausea. I told her I was nervous to take Steph home if she was going to be feeling like an 8. Even towards the end of her 4 hours in between meds she starts to have more headache/pain. Hopefully the new pain med helps keep the pain down.
Steph tried to eat breakfast this morning but the omelet was a little to hard to chew. It was hurting her to chew it. The potato bits were not edible and she fell asleep before the milk could soften her cheerios. I don't dare wake her just to eat cheerios. While I was typing this she woke up and I asked her if she wanted the cheerios. She said "I want to go to sleep." I guess cheerios are to boring without sugar or honey for her to wake up for. She did eat a half of the cup of applesauce with her pain med so she should be ok.
Hopefully we don't need morphine today so we can come home. The nurse said they won't send her home if she has morphine in her system.
Dr Shelton came in just now. He asked her about her pain and she said 4-5. She still didn't want to eat the cheerios though. It looks like we will probably be coming home today.
I have been so worried about the pain Steph is going through that I forgot to mention that her face has had some slight paralysis on the right side. you can't really tell when talking to her but the nurses and doctors do test on her each day and night. She has to smile showing teeth, raise her eyebrows, close her eyes tightly, and scrunch her nose. I haven't told her this but the doctors quickly mention "slight paralysis" and tell her it's normal and should go back to normal. Her right eye brow doesn't raise as high. Her smile is just a little off on the right. The biggest thing I noticed is her right eye blinks slower than her left. Dr Mann told her that she may need eye drops and that we can just get over the counter ones when we get home if her lack of blinking gets worse. Don't mention it to her if you see her though. Even if it is to tell her that I am crazy and that you can't see a difference like I mentioned on the blog. She was really nervous about have a lazy face.
Thursday, January 17, 2013
Wed night and Thursday
Steph had a not so good night last night. She was given her pain meds at 2 am and didn't eat anything with them. She felt pretty sick the rest of the night. At around 8 am we went for a walk around the halls and she did really well even though she said she was pretty dizzy. After we got back from our walk, while eating breakfast she got vertigo really badly and had a migraine along with being nauseous. They gave her some nausea meds around 11am and it didn't seem to help. She was really sick. It reminded me of the first day. She was in so much pain and so sick nothing seemed to help. They were giving her pain meds in the pill form on schedule but they weren't even taking the edge off. They gave her morphine at about 12 pm and it didn't really do anything. They gave her some more at 1 pm and still nothing. She ate a little pudding and drank some apple juice and that didn't really calm her stomach. At 2 pm she got some more pain meds and a new kind of anti nausea drug that she hadn't had before. I also gave her a blessing real quick. She didn't want me to take the time to go find someone so I did it alone. Blame it on the meds or the blessing, I like to think it was the blessing, but she was asleep in about 10 minutes. Finally some relief for her. It had been so disheartening to see her be so sick after doing so well yesterday.
The nurse came in a little before 3 and said they had a room for us upstairs. Steph slept most of the time on the ride in the bed up here. She was feeling well enough to scoot from one bed to the new one on her own. She fell right back to sleep after moving.
It is so quite up here. Stephs sister came to visit earlier in the afternoon. She didn't get to talk to Steph very much because she was in too much pain to talk or look at her. But her sister and I talked about how much noise there was in the NCCU (neuroscience critical care unit.) There was a constant beeping noise all day everyday. It must have been some kind of machine making sure someone was alive still. I will have nightmares about that beep. You could tune it out for a while but all of a sudden you would remember how lousy that beeping noise is and then realize you have been listening to it all along. The nurses desk is also right outside the room and there isn't a wall. It is a giant glass door. It hangs from the ceiling and there is a 1 inch gap between the bottom of the door and the floor. It didn't block out the talking very well.
Then new room also has its own bathroom. No more hobo baths for me! Oh and Steph doesn't have to use the toilet in the corner separating it from the room with only a curtain.
I hope there aren't any more episodes like the one she had today when we come home. If there is I would be tempted to take her to the ER. Atleast she is sleeping now. Thank goodness.
The nurse came in a little before 3 and said they had a room for us upstairs. Steph slept most of the time on the ride in the bed up here. She was feeling well enough to scoot from one bed to the new one on her own. She fell right back to sleep after moving.
It is so quite up here. Stephs sister came to visit earlier in the afternoon. She didn't get to talk to Steph very much because she was in too much pain to talk or look at her. But her sister and I talked about how much noise there was in the NCCU (neuroscience critical care unit.) There was a constant beeping noise all day everyday. It must have been some kind of machine making sure someone was alive still. I will have nightmares about that beep. You could tune it out for a while but all of a sudden you would remember how lousy that beeping noise is and then realize you have been listening to it all along. The nurses desk is also right outside the room and there isn't a wall. It is a giant glass door. It hangs from the ceiling and there is a 1 inch gap between the bottom of the door and the floor. It didn't block out the talking very well.
Then new room also has its own bathroom. No more hobo baths for me! Oh and Steph doesn't have to use the toilet in the corner separating it from the room with only a curtain.
I hope there aren't any more episodes like the one she had today when we come home. If there is I would be tempted to take her to the ER. Atleast she is sleeping now. Thank goodness.
Wednesday, January 16, 2013
Wednesday
Steph is continuing to get better. We did some more walking and one of the times she did 3 laps around the nurses station. She will walk until she gets to dizzy and feels sick. Dr. Shelton told us to make sure she doesn't get so dizzy that she throws up. That is how we know she was working too hard.
After her walks she gets really tired and sleeps for a few hours. When she is awake she can talk like normal and we have had some long conversations.She is getting more of an appetite back. A lot more means about a half a cup of non chewing foods like mashed potatoes, turkey that I cut into really small pieces, apple sauce,smoothies, and chicken broth with saltines in it. She said she can only chew with her front teeth because it hurts to move her jaw to line up her molars. She can only open her mouth about a quarter inch for me to spoon food in. She does pretty good with a straw.
They have switched her to pill meds now. She hasn't thrown anything up since yesterday morning. That really helps. She hasn't had to take any of the anti nausea meds but the pain meds still make her pretty tired.
We are still in NCCU because of the bed situation. The nurses love having Steph here because she is so easy compared to their regular stroke patients. I heard the nurses talking outside the door today and Steph's nurse was saying how she felt bad for the other nurse because she had one fairly easy guy and "this angel" and pointed to Steph.
I got a chance to run home and see the kids and shower while Steph's mom came and visited. When I was about to leave and come back to the hospital the Mimaids from the ward came by to drop off some cookies. Score! thanks ladies!
After I got back to the hospital Steph was thinking she was ready for bed for the night. I had her walk around the nurses station one more time and she got nauseous after one lap. We got some chicken broth with saltines and that calmed her stomach down. She has really improved today. It's so good to see such improvement.
Here is a pic of her from this morning.
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After her walks she gets really tired and sleeps for a few hours. When she is awake she can talk like normal and we have had some long conversations.She is getting more of an appetite back. A lot more means about a half a cup of non chewing foods like mashed potatoes, turkey that I cut into really small pieces, apple sauce,smoothies, and chicken broth with saltines in it. She said she can only chew with her front teeth because it hurts to move her jaw to line up her molars. She can only open her mouth about a quarter inch for me to spoon food in. She does pretty good with a straw.
They have switched her to pill meds now. She hasn't thrown anything up since yesterday morning. That really helps. She hasn't had to take any of the anti nausea meds but the pain meds still make her pretty tired.
We are still in NCCU because of the bed situation. The nurses love having Steph here because she is so easy compared to their regular stroke patients. I heard the nurses talking outside the door today and Steph's nurse was saying how she felt bad for the other nurse because she had one fairly easy guy and "this angel" and pointed to Steph.
I got a chance to run home and see the kids and shower while Steph's mom came and visited. When I was about to leave and come back to the hospital the Mimaids from the ward came by to drop off some cookies. Score! thanks ladies!
After I got back to the hospital Steph was thinking she was ready for bed for the night. I had her walk around the nurses station one more time and she got nauseous after one lap. We got some chicken broth with saltines and that calmed her stomach down. She has really improved today. It's so good to see such improvement.
Here is a pic of her from this morning.
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Wednesday Morning
Steph was feeling well enough that we had her go potty and got her to walk around the hall. One of the nurses saw her walking and got excited and offered her a shower. Steph said that would be nice. She just had to walk down the hall to the bathroom. Steph walked while I held her left arm and she pushed/held on to her IV stand with her right hand. The nurses pulled all of the sticky pads off and covered the two incisions and the IVs in her arms. There was a bench that Steph sat on and she used the wand. She did the shower by herself and then after drying her off we made our was back to the room. The nurse asked if she wanted to sit in the chair or lay in bed. Steph choose the bed pretty quickly. She is getting a little more of an appetite and ate almost all her small applesauce cup and had some sips of sprite.
The head nurse was called out on an emergency while she was getting Steph hooked back up. Someone had a stroke I think. I got to help the other nurse hook steph back up to all her monitors and gauze her stomach wound. I should get some kind of a little badge like how they used to give kids a wing pin on airplanes. I would be happy with a bandaid that says "Nurse in training" written in pen or maybe "PHD in bandaids."
I read her some of the blog posts and facebook messages and she fell asleep.
The head nurse was called out on an emergency while she was getting Steph hooked back up. Someone had a stroke I think. I got to help the other nurse hook steph back up to all her monitors and gauze her stomach wound. I should get some kind of a little badge like how they used to give kids a wing pin on airplanes. I would be happy with a bandaid that says "Nurse in training" written in pen or maybe "PHD in bandaids."
I read her some of the blog posts and facebook messages and she fell asleep.
Tuesday Night
Last night went really well. Steph slept off and on until about midnight when the nurse came in to check on her. After the nurse left at about 1 we both fell asleep. Monday night she would call for me when she felt sick or needed something. Last night she didn't call for me at all. She got woken up every 2 hours when the nurse would do her thing and then she would just go back to sleep. After breakfast I asked her if she would sit up on the edge of the bed. She said she would if I would rub her legs after. I had her sit on the edge of the bed and she felt good enough to stand up. She stood by the edge of her bed for a couple of minutes and was getting to sick and had to lay back down. She didn't throw up.
Dr. Mann came in this morning to check on her and he said today he wanted her sitting in a chair if she wasn't actually napping. He also wanted her to walk around in the hall at least 4 times today. He also had the nurse take out the catheter and take out the IV heart rate monitor. They were supposed to be taken out yesterday before we moved to the new room. Since a bed never became available they just left them in and when the nurses changed shifts the new nurse let her keep it in for the night. Steph was happy she didn't have to get up last night to go the bathroom or have the nurse come in every hour to check blood pressure.
Dr. Mann came in this morning to check on her and he said today he wanted her sitting in a chair if she wasn't actually napping. He also wanted her to walk around in the hall at least 4 times today. He also had the nurse take out the catheter and take out the IV heart rate monitor. They were supposed to be taken out yesterday before we moved to the new room. Since a bed never became available they just left them in and when the nurses changed shifts the new nurse let her keep it in for the night. Steph was happy she didn't have to get up last night to go the bathroom or have the nurse come in every hour to check blood pressure.
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