Steph has been doing good the past few days. I feel like I've typed that before. I probably won't be updating this blog now as often unless something different happens.
She did get pretty dizzy today (Monday) but I think it is because she is really doing a lot more now. She still didn't need any prescription meds. She couldn't feel her ear before but she said she can feel it now.
Her face is continuing to get worse. It is just a little bit at a time. It is really just a waiting game on how much more paralysis she will get in her face. She really feels self conscious about how her face looks so I hope it doesn't get much worse. I think it is cute though.
Monday, January 28, 2013
Friday, January 25, 2013
Thursday and Friday Week 2
Steph has been doing so well the past couple of days. She is still pretty dizzy when she walks around but she gets some relief when she is sitting down and doesn't move her head. She washed her hair for the first time on Thursday. We just made sure to not scrub close to the incision and just let the soapy water run over it.
We just We went to the store for the first time and Steph was worried about getting dressed. I told her she wouldn't be the only one in her PJs but she refused and got into jeans and boots. We counted 7 people in PJs in the 30 minutes that we were there.
Her face continues to get a little less controlled. The right side eye lid won't close all the way and her smile is just a little bit off. She won't let me post a picture of her face, she said she looks to crazy without makeup and her hair done.
She has to put eye drops in every 2 hours. The eye drops and ibuprofen for swelling is all she is taking now. She hasn't needed the pain meds for the last few days. She didn't like taking them anyway because it made her just feel gross. It did help with the pain though.
We just We went to the store for the first time and Steph was worried about getting dressed. I told her she wouldn't be the only one in her PJs but she refused and got into jeans and boots. We counted 7 people in PJs in the 30 minutes that we were there.
Her face continues to get a little less controlled. The right side eye lid won't close all the way and her smile is just a little bit off. She won't let me post a picture of her face, she said she looks to crazy without makeup and her hair done.
She has to put eye drops in every 2 hours. The eye drops and ibuprofen for swelling is all she is taking now. She hasn't needed the pain meds for the last few days. She didn't like taking them anyway because it made her just feel gross. It did help with the pain though.
Thursday, January 24, 2013
Thursday morning week 2
Steph has been doing well the past few days. Tuesday we went to the doctor and she said it looks like the redness in her throat is just from the breathing tube they use during surgery. So no Strep, which was great news. Steph came in to the pharmacy with me to pick up some other stuff. Afterwards she slept for a few hours. When she does a lot of work it seems to wipe her out and make her head hurt. She didn't get up much on Wednesday because she was not feeling up to it, probably because of all the walking we did at the Doctor's office and pharmacy and the driving around the day before. She started feeling better Wed. night and ate a pretty good dinner. She was feeling well enough that she skipped her pain meds that were scheduled for the middle of the night and early morning.
Monday, January 21, 2013
Monday, week 2
Monday has gone alot better than last monday! Steph has been getting more of an appetite. She still doesn't eat very much but she has an appetite now. She even had me take her to arctic circle for a reeses pb cup shake and then to subway for a cold cut trio. She hasn't had as much nausea today as the past week. She has wanted to get up more and get around so it will help her brain figure things out quicker. We went for a little walk on the sidewalk just in front of the house. We went back and for and that was long enough but Steph said it seems to help to breathe the cold air. She sleeps for a few hours after we do the walks. It really takes it out of her.
We also have the kids home tonight for the first time. They have been having sleepovers at grandmas house after dinner the past few nights. Steph loves having them around.. She has even been reading books to them.
I'm not going to get too excited because it reminds me of how she was doing so well on Wednesday last week and then Thursday was the worst day for her. I'm crossing my fingers it doesn't go backwards tomorrow.
The bad news is that Steph has had a sore throat that keeps getting worse over the last few days. It kind of looks like she might be getting strep throat. We messaged her doctor to see if maybe its just from the breathing tube they use during surgery but I don't think it is. Guess we will find out when we go to the doctor's office tomorrow.
We also have the kids home tonight for the first time. They have been having sleepovers at grandmas house after dinner the past few nights. Steph loves having them around.. She has even been reading books to them.
I'm not going to get too excited because it reminds me of how she was doing so well on Wednesday last week and then Thursday was the worst day for her. I'm crossing my fingers it doesn't go backwards tomorrow.
The bad news is that Steph has had a sore throat that keeps getting worse over the last few days. It kind of looks like she might be getting strep throat. We messaged her doctor to see if maybe its just from the breathing tube they use during surgery but I don't think it is. Guess we will find out when we go to the doctor's office tomorrow.
Sunday, January 20, 2013
Saturday and Sunday Morning
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.
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.
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.
Tuesday, January 15, 2013
Tuesday
Steph had a pretty good day today. She hasn't thrown up since 10 am. She has been very nauseous at times but she never throws up. She has had a few small bites of jello and some sips of apple juice for lunch. She also ate a few bites of pudding and drank a little sprite tonight. She can't open her mouth very far or bite her back teeth together to chew because it hurts the incision. So I have been feeding her very small bites off a spoon and she drinks through a straw.
Her legs and back have also been pretty sore so I will rub them gently to help but it makes her head hurt. I think the movement it causes her head is causing the problems. She said it helps to have them rubbed though.
The nurses came in today and gave her a quick bath and changed her sheets. When they did that they had Steph sit up on the edge of the bed. She was getting sick but handling it pretty well so they wanted to see if she could make it a few steps to the chair. She shuffled a few steps to the chair and sat down. She said it made her a little dizzy/nauseous but it felt good to be sitting up instead of laying down.
I had her sit up a few other times today but never walked her. She would sit for a few minutes and then start to feel sick so she would lay back down. I have also been trying to have her open her eyes while laying in bed. I will have her focus on me standing at the end of her bed while I talk to her and ask her questions. Even though it isn't walking I figure that it still helps her brain figure things out. She is very tired from the anti nausea meds and it is very hard for her to keep her eyes open. She has been talking alot more to day. We have even had some short conversations instead of just a yes or no from her like yesterday.
Dr Shelton came in tonight and apologized that we weren't moved yet. We are still in NCCU because they ran out of beds upstairs. He said he went up there to try to find her one but they really are filled up. He told me to get her out of bed and walking tomorrow even if it is just a short distance. He said to just try to get a little farther each time. He said he doesn't like to order physical therapists when there is family around because that way the patient doesn't just wait around for the PT and only work out when they are there. So the plan is to be pretty busy tomorrow getting Steph out.
Her legs and back have also been pretty sore so I will rub them gently to help but it makes her head hurt. I think the movement it causes her head is causing the problems. She said it helps to have them rubbed though.
The nurses came in today and gave her a quick bath and changed her sheets. When they did that they had Steph sit up on the edge of the bed. She was getting sick but handling it pretty well so they wanted to see if she could make it a few steps to the chair. She shuffled a few steps to the chair and sat down. She said it made her a little dizzy/nauseous but it felt good to be sitting up instead of laying down.
I had her sit up a few other times today but never walked her. She would sit for a few minutes and then start to feel sick so she would lay back down. I have also been trying to have her open her eyes while laying in bed. I will have her focus on me standing at the end of her bed while I talk to her and ask her questions. Even though it isn't walking I figure that it still helps her brain figure things out. She is very tired from the anti nausea meds and it is very hard for her to keep her eyes open. She has been talking alot more to day. We have even had some short conversations instead of just a yes or no from her like yesterday.
Dr Shelton came in tonight and apologized that we weren't moved yet. We are still in NCCU because they ran out of beds upstairs. He said he went up there to try to find her one but they really are filled up. He told me to get her out of bed and walking tomorrow even if it is just a short distance. He said to just try to get a little farther each time. He said he doesn't like to order physical therapists when there is family around because that way the patient doesn't just wait around for the PT and only work out when they are there. So the plan is to be pretty busy tomorrow getting Steph out.
Monday Night
Steph had a pretty rough night. She was up every half hour to hour feeling sick or throwing up. She is still really sleepy from the anti nausea medicine so she would usually fall back to sleep pretty quickly afterwards. She is having some discomfort in her back and neck from the way she has to lay. She can't really find a comfortable spot but she is pretty limited on how she can lay with a big ball of gauze behind her right ear. We tried to lay her on her side last night with the help of some pillows propped in key spots and that had limited success. I tried to rub the spots on her back where she complained hurt the most but that just gave her a headache. She kindof made her way back to laying on her back after a few hours.
Early in the morning she was running a fever of about 101, if I did the math right. The temp is in Celsius. The nurse said that was normal. Instead of getting chills she complained about being too hot. They brought her in a big fan and that seemed to help. Her temp is more normal now.
Dr. Reichman came in this morning to check on her and said he wanted to move her up to a regular room and get her walking. He said that would be the only way to really fix the nausea. Dr. Shelton's Resident, Dr. Mann came in and changed her dressing on her head and on her stomach (from the fat graft.) When he changed the head dressing I got a good look at her incision. Her hair is shaved a couple inches back from her ear with the cut running behind the ear about an inch. It starts about parallel to the bottom of her ear and runs to above her ear following the contour of the ear. Dr Mann said that the anti nausea medicine doesn't help a whole lot because her nausea is caused by vertigo. We were hoping that because her tumor was so big it would have already caused some damage to the balance nerves on the right side and the left would have started compensating. If that was the case the vertigo wouldn't be so bad after surgery. It looks like that isn't really the case so getting her up and walking is the only option. She wasn't happy about that. She did get a couple sips of apple juice to stay down so that is good news. They are about to give her another shot of morphine so hopefully she doesn't sent the apple juice back up after. The nurse said the shot lasts longer and doesn't usually make people as sick as the iv morphine. Steph chose to do the shot and she hates needles so I know she is feeling pretty sick still. When they give her the shot, in the arm or butt, she doesn't make a sound but she squeezes my hand pretty hard.
Hopefully all goes well today and she sleeps better tomorrow.
Steph said it was ok to post some pictures in case someone found her blog that was going through the same thing. It really helped to to read other peoples stories like the Morgans. So here are some pics. The first one is from monday night about 8:30 PM and the second is this morning, Tues, at 9:30 AM
Early in the morning she was running a fever of about 101, if I did the math right. The temp is in Celsius. The nurse said that was normal. Instead of getting chills she complained about being too hot. They brought her in a big fan and that seemed to help. Her temp is more normal now.
Dr. Reichman came in this morning to check on her and said he wanted to move her up to a regular room and get her walking. He said that would be the only way to really fix the nausea. Dr. Shelton's Resident, Dr. Mann came in and changed her dressing on her head and on her stomach (from the fat graft.) When he changed the head dressing I got a good look at her incision. Her hair is shaved a couple inches back from her ear with the cut running behind the ear about an inch. It starts about parallel to the bottom of her ear and runs to above her ear following the contour of the ear. Dr Mann said that the anti nausea medicine doesn't help a whole lot because her nausea is caused by vertigo. We were hoping that because her tumor was so big it would have already caused some damage to the balance nerves on the right side and the left would have started compensating. If that was the case the vertigo wouldn't be so bad after surgery. It looks like that isn't really the case so getting her up and walking is the only option. She wasn't happy about that. She did get a couple sips of apple juice to stay down so that is good news. They are about to give her another shot of morphine so hopefully she doesn't sent the apple juice back up after. The nurse said the shot lasts longer and doesn't usually make people as sick as the iv morphine. Steph chose to do the shot and she hates needles so I know she is feeling pretty sick still. When they give her the shot, in the arm or butt, she doesn't make a sound but she squeezes my hand pretty hard.
Hopefully all goes well today and she sleeps better tomorrow.
Steph said it was ok to post some pictures in case someone found her blog that was going through the same thing. It really helped to to read other peoples stories like the Morgans. So here are some pics. The first one is from monday night about 8:30 PM and the second is this morning, Tues, at 9:30 AM
Monday, January 14, 2013
She's Out!
We made it a little early this morning at 5:15. Steph's parents came up to the hospital with us and her awesome brother and sister in law came over at 4:30AM to watch the kids. After signing in I realized I didn't know where I put Steph's Drivers License. She was told it was required for check in. I finally found it outside her car door. I dropped it while helping her out of the car.
Surgery started at about 8:30 and lasted what felt like all day but was actually about 5 1/2 hours.We waited in the surgery waiting room with a bunch of other nervous nellies until we got a call at 1:30 that she was done. We made our way to the second waiting room for the Neurology department and waited another little while so they could get her set up in her room. The Nuerologist Dr Reichman came in to tell us how well it went. He said it was not cancerous and they removed 100% of the tumor. He said that after they were done and she was waking up she gave them a smile so we know her facial nerves are ok. There still could be some swelling with the nerve and that would make her loose the ability to control the right side of her face but if that happens it will be back to normal within 12 months. After that we were allowed to see her. The overwhelming feeling of hopelessness rushed over me as I saw her laying in bed semi unconscious. I thought I had come to grips with the fact that I could really only be a sidekick and cheerleader. But I really felt like I had no idea how I could help take this pain away from her. In between very short periods of sleep she was mumbling that she was feeling sick and that her head was really hurting. The Nurse was hesitant to give her any medicine until she was a little more awake. "If she can sleep then her pain level isn't high enough for morphine." It took her another 30 minutes and she was awake enough to get some medicine. She got a little frustrated that it was taking so long to get the morphine. The Nurse gave her some anti nausea medicine and then her morphine. She started to throw up almost instantly and my dad instincts kicked in. I know what to do! While Steph's mom wiped her chin I held the bag. I'm a hero! Not really but at least I was doing something. Since then Steph has mostly been asleep but she did wake up for a few minutes and chatted about how uncomfortable she was then ate some ice chips and threw them up. Maybe I'm a wuss but I would probably use different words to describe pain from brain surgery.She is sleeping now. The plan is to have her moved from the NCCU to a regular bed tomorrow. She will be on the 14th floor. The best views is what I am told.
Thanks to everyone who has helped, prayed, fasted, or sent well wishes. It really means a lot to Steph and I.
Nick
Surgery started at about 8:30 and lasted what felt like all day but was actually about 5 1/2 hours.We waited in the surgery waiting room with a bunch of other nervous nellies until we got a call at 1:30 that she was done. We made our way to the second waiting room for the Neurology department and waited another little while so they could get her set up in her room. The Nuerologist Dr Reichman came in to tell us how well it went. He said it was not cancerous and they removed 100% of the tumor. He said that after they were done and she was waking up she gave them a smile so we know her facial nerves are ok. There still could be some swelling with the nerve and that would make her loose the ability to control the right side of her face but if that happens it will be back to normal within 12 months. After that we were allowed to see her. The overwhelming feeling of hopelessness rushed over me as I saw her laying in bed semi unconscious. I thought I had come to grips with the fact that I could really only be a sidekick and cheerleader. But I really felt like I had no idea how I could help take this pain away from her. In between very short periods of sleep she was mumbling that she was feeling sick and that her head was really hurting. The Nurse was hesitant to give her any medicine until she was a little more awake. "If she can sleep then her pain level isn't high enough for morphine." It took her another 30 minutes and she was awake enough to get some medicine. She got a little frustrated that it was taking so long to get the morphine. The Nurse gave her some anti nausea medicine and then her morphine. She started to throw up almost instantly and my dad instincts kicked in. I know what to do! While Steph's mom wiped her chin I held the bag. I'm a hero! Not really but at least I was doing something. Since then Steph has mostly been asleep but she did wake up for a few minutes and chatted about how uncomfortable she was then ate some ice chips and threw them up. Maybe I'm a wuss but I would probably use different words to describe pain from brain surgery.She is sleeping now. The plan is to have her moved from the NCCU to a regular bed tomorrow. She will be on the 14th floor. The best views is what I am told.
Thanks to everyone who has helped, prayed, fasted, or sent well wishes. It really means a lot to Steph and I.
Nick
Friday, January 11, 2013
Bright and early
The hospital just called me to let me know the time. I am supposed to arrive at the hospital at 5:30 monday morning the surgery should start no later than 7:00. I hope my babysitter is still willing to come over :) I think I am finally ready to go. I have a funeral for Nick's grandma tomorrow, then my family is having a fast on Sunday for me and a big dinner to break our fast and for my last decent tasting meal for awhile. I am really sad to be leaving my kids for so long. Especially little Cole, he's such a mama's boy I think he will really miss me. Thanks everyone for your concern and prayers.
Tuesday, January 8, 2013
Pre-op with Dr Reichman
Yesterday I met with Dr Reichman up at IMC. That is where I will be having my surgery. Dr Reichman is the Neuro-surgeon that will work with Dr Shelton. I enjoyed meeting him, he told me that many years ago he had had a similar surgery, he lost the hearing in his ear and had his balance nerves cut, he said he's doing great. He told me it hasn't affected his skiing at all. I was so relieved to hear that since that has been one of my concerns.
He did say that it was going to be very difficult to remove my tumor from my brainstem. The surgery should take 4-6 hours but because my tumor is "very large" and because it is on the brainstem it will probably take 8 hours or more for the surgery. Nick then had to ask what side effects I could have from having it removed off my brainstem. He said I could lose all movement on the left side of my body, but with physical therapy I can learn to move again in about a year. I am not too concerned about this happening I have fasted and prayed for these surgeons a lot and I will focus on that. I am sure that they will do a great job.
One good possibility from having a very large tumor is that there is a chance that the tumor has already destroyed my balance nerves, and so my brain has already compensated for not having them on my right side. That means that recovery could be a lot easier. I wouldn't be so sick and it would be a lot easier to learn to balance. I am trying not to get my hopes up though.
I have lost about 50% of my taste now most of it was lost within the last month. I was very disapointed when me and Nick stopped for my favorite icecream and I couldn't taste it. I don't know if my taste will ever come back. I guess that will just be one more thing that we have to wait and see if it will ever come back.
I will go meet with Dr Shelton again on Friday and should get my surgery time that day. I am so sick of waiting, I just want to get this over with. I will post again on Friday when I know what time my surgery will be.
He did say that it was going to be very difficult to remove my tumor from my brainstem. The surgery should take 4-6 hours but because my tumor is "very large" and because it is on the brainstem it will probably take 8 hours or more for the surgery. Nick then had to ask what side effects I could have from having it removed off my brainstem. He said I could lose all movement on the left side of my body, but with physical therapy I can learn to move again in about a year. I am not too concerned about this happening I have fasted and prayed for these surgeons a lot and I will focus on that. I am sure that they will do a great job.
One good possibility from having a very large tumor is that there is a chance that the tumor has already destroyed my balance nerves, and so my brain has already compensated for not having them on my right side. That means that recovery could be a lot easier. I wouldn't be so sick and it would be a lot easier to learn to balance. I am trying not to get my hopes up though.
I have lost about 50% of my taste now most of it was lost within the last month. I was very disapointed when me and Nick stopped for my favorite icecream and I couldn't taste it. I don't know if my taste will ever come back. I guess that will just be one more thing that we have to wait and see if it will ever come back.
I will go meet with Dr Shelton again on Friday and should get my surgery time that day. I am so sick of waiting, I just want to get this over with. I will post again on Friday when I know what time my surgery will be.
Thursday, January 3, 2013
Getting Ready
Surgery is only a week and a half away. Yes, I am freaking out a little. There is so much to do around the house to prepare to be useless for a few weeks. Me and Nick went skiing to the Canyons yesterday for my first and last time this season. It was fun, and I hope that my dizziness in the future won't affect me being able to ski fast and through the trees. It was an awesome day and it mostly kept my mind distracted from my upcoming surgery. With Christmas over I just have Eliza's birthday party to host this weekend then it's Go time. Because I will probably loose my sense of taste at least on my right side, Me and Nick have been going to all my favorite restaurants. It has been deliciously fun. We've also been taking a lot of pictures of me, My face will be paralyzed on the right side after the surgery, hopefully the nerve will be able to repair itself but it usually takes close to a year for that to happen. I told Nick he's not allowed to take pictures of me while my face is not working. Next week I will have my pre-op appointments. I will go on Monday to meet the Neurologist, Dr. Mark Reichman, Then on Thursday I will have a hearing test (I don't know why since I am going to lose my hearing anyway) and I will meet again with Dr Shelton. Thanks again for all the support!
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