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.
Wednesday, January 16, 2013
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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