Guest guest Posted May 10, 2009 Report Share Posted May 10, 2009 It's so nice to get the good news! .. From: Kendra <kendranicole@...> Subject: , Part IV Date: Sunday, May 10, 2009, 7:32 PM Yay - I got to see my woman again today and she's looking amazing! is receiving 4 breaths per minute from the ventilator and breathing on her own the rest of the time. BP steady at 86 today; vent O2 at 35. She was up in her wheelchair for 45 minutes today, off her pain medication for most of my 2 hour visit, and even got off the ventilator for 15 minutes! Still no voice. Had some issues this morning with bleeding around the trach opening, so they eased off blood thinners for the day. She wanted to shoot the shit for most of my visit - talk about work, what's going on during my week, t.v., and just general -Kendra conversation. Her parents and brother were there for my entire visit so it was difficult to talk about much else. She had a difficult time using her iPhone and writing is still tedious. We typed a bit back and forth on the laptop I brought about her care. Her mother kept coming over to read over our shoulder and she kept telling her mother to get away. We ended our conversation prematurely due to the lack of privacy. was concerned that she was told the doctor's consulted with Dr. Wang at Stanford and was told that he approved of the vent. She believes this is a lie and thinks they are still not consulting with SMA specialists. However, she was feeling good about the care she was receiving. She's been advocating for herself, argued with the doctors to start listening to her about what she wants and they have been listening. Her pain meds are adjusted when she asks. She has posts all over her ICU room to ensure that nurses leave with her iPhone and call button. She's been able to watch some television, too. Her dad has been able to get in to be with her now that he isn't sick anymore, and he was quite the advocate on her behalf even standing up to the mother to say no when Holly disagreed with what wanted. He was very patient communicating with her and tried multiple avenues before finding the most efficient route with the alphabet board. You can tell is still peeved about using an alphabet board but she's been trying. She still is not eating or drinking - and she's making a big stink about it. She is dying for a drink and solid foods. She has been having an upset stomach and still have her on feeding tube for a while longer before trying a liquid diet, hopefully later this week. asked to go outside this afternoon but she is not using a portable ventilator. They will try to get a portable vent tomorrow to bring her outside if the weather is still good. is frustrated with the slow process and wants to get out of hospital as soon as possible. Her dad was great giving her pep talks about staying positive and making plans for when she does get out. wants a solid time line of when she can get a private room out of ICU and then look forward to getting home but, understandably, no one will give her any dates. Her parents estimate that it will be 2 weeks at most until she's home if she continues to recover at this speed. She has been seeing some visitors and she is asking to see more people. It still says " family only " on her board but I heard that her attendant/friend Eliina will be going back on Tuesday. One of 's friends from my area had me bring down a care package. Among other things, indulged in some lip balm and was psyched! I can't say how happy I am with today's visit. I know there's a lot to be said from 's end still and a lot of emotional aspects that aren't yet being handled; but to see her smile and laugh, to have her up in her chair, to be off her medication, to have her advocate on her on behalf - it's just incredible! I feel more calm. She is expecting my visit again next Sunday. ------------------------------------ A FEW RULES * The list members come from many backgrounds, ages and beliefs So all members most be tolerant and respectful to all members. * Some adult language and topics (like sexual health, swearing..) may occur occasionally in emails. Over use of inappropriate language will not be allowed. If your under 16 ask your parents/gaurdian before you join the list. * No SPAMMING or sending numerous emails unrelated to the topics of spinal muscular atrophy, health, and the daily issues of the disabled. Post message: Subscribe: -subscribe Unsubscribe: -unsubscribe Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 10, 2009 Report Share Posted May 10, 2009 Yes, that is great! I hope she'll get off the vent soon! I was on one for two years and was able to get off. L Sent from my Verizon Wireless BlackBerry , Part IV Date: Sunday, May 10, 2009, 7:32 PM Yay - I got to see my woman again today and she's looking amazing! is receiving 4 breaths per minute from the ventilator and breathing on her own the rest of the time. BP steady at 86 today; vent O2 at 35. She was up in her wheelchair for 45 minutes today, off her pain medication for most of my 2 hour visit, and even got off the ventilator for 15 minutes! Still no voice. Had some issues this morning with bleeding around the trach opening, so they eased off blood thinners for the day. She wanted to shoot the shit for most of my visit - talk about work, what's going on during my week, t.v., and just general -Kendra conversation. Her parents and brother were there for my entire visit so it was difficult to talk about much else. She had a difficult time using her iPhone and writing is still tedious. We typed a bit back and forth on the laptop I brought about her care. Her mother kept coming over to read over our shoulder and she kept telling her mother to get away. We ended our conversation prematurely due to the lack of privacy. was concerned that she was told the doctor's consulted with Dr. Wang at Stanford and was told that he approved of the vent. She believes this is a lie and thinks they are still not consulting with SMA specialists. However, she was feeling good about the care she was receiving. She's been advocating for herself, argued with the doctors to start listening to her about what she wants and they have been listening. Her pain meds are adjusted when she asks. She has posts all over her ICU room to ensure that nurses leave with her iPhone and call button. She's been able to watch some television, too. Her dad has been able to get in to be with her now that he isn't sick anymore, and he was quite the advocate on her behalf even standing up to the mother to say no when Holly disagreed with what wanted. He was very patient communicating with her and tried multiple avenues before finding the most efficient route with the alphabet board. You can tell is still peeved about using an alphabet board but she's been trying. She still is not eating or drinking - and she's making a big stink about it. She is dying for a drink and solid foods. She has been having an upset stomach and still have her on feeding tube for a while longer before trying a liquid diet, hopefully later this week. asked to go outside this afternoon but she is not using a portable ventilator. They will try to get a portable vent tomorrow to bring her outside if the weather is still good. is frustrated with the slow process and wants to get out of hospital as soon as possible. Her dad was great giving her pep talks about staying positive and making plans for when she does get out. wants a solid time line of when she can get a private room out of ICU and then look forward to getting home but, understandably, no one will give her any dates. Her parents estimate that it will be 2 weeks at most until she's home if she continues to recover at this speed. She has been seeing some visitors and she is asking to see more people. It still says " family only " on her board but I heard that her attendant/friend Eliina will be going back on Tuesday. One of 's friends from my area had me bring down a care package. Among other things, indulged in some lip balm and was psyched! I can't say how happy I am with today's visit. I know there's a lot to be said from 's end still and a lot of emotional aspects that aren't yet being handled; but to see her smile and laugh, to have her up in her chair, to be off her medication, to have her advocate on her on behalf - it's just incredible! I feel more calm. She is expecting my visit again next Sunday. ------------------------------------ A FEW RULES * The list members come from many backgrounds, ages and beliefs So all members most be tolerant and respectful to all members. * Some adult language and topics (like sexual health, swearing..) may occur occasionally in emails. Over use of inappropriate language will not be allowed. If your under 16 ask your parents/gaurdian before you join the list. * No SPAMMING or sending numerous emails unrelated to the topics of spinal muscular atrophy, health, and the daily issues of the disabled. Post message: Subscribe: -subscribe Unsubscribe: -unsubscribe Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 10, 2009 Report Share Posted May 10, 2009 Wow, it's great to hear such positive things going on. I'll tell you, a mother like that would drive me bonkers! Glad her dad gets it a little better. Why does she not have a voice yet? On Sun, May 10, 2009 at 9:19 PM, <lorig713@...> wrote: > Yes, that is great! I hope she'll get off the vent soon! I was on one for > two years and was able to get off. > > L > Sent from my Verizon Wireless BlackBerry > > , Part IV > > Date: Sunday, May 10, 2009, 7:32 PM > > > Yay - I got to see my woman again today and she's looking amazing! > is receiving 4 breaths per minute from the ventilator and breathing on her > own the rest of the time. BP steady at 86 today; vent O2 at 35. She was up > in her wheelchair for 45 minutes today, off her pain medication for most of > my 2 hour visit, and even got off the ventilator for 15 minutes! Still no > voice. Had some issues this morning with bleeding around the trach opening, > so they eased off blood thinners for the day. > > She wanted to shoot the shit for most of my visit - talk about work, what's > going on during my week, t.v., and just general -Kendra conversation. > Her parents and brother were there for my entire visit so it was difficult > to talk about much else. She had a difficult time using her iPhone and > writing is still tedious. We typed a bit back and forth on the laptop I > brought about her care. Her mother kept coming over to read over our > shoulder and she kept telling her mother to get away. We ended our > conversation prematurely due to the lack of privacy. was concerned > that she was told the doctor's consulted with Dr. Wang at Stanford and was > told that he approved of the vent. She believes this is a lie and thinks > they are still not consulting with SMA specialists. However, she was feeling > good about the care she was receiving. > > She's been advocating for herself, argued with the doctors to start > listening to her about what she wants and they have been listening. Her pain > meds are adjusted when she asks. She has posts all over her ICU room to > ensure that nurses leave with her iPhone and call button. She's been > able to watch some television, too. Her dad has been able to get in to be > with her now that he isn't sick anymore, and he was quite the advocate on > her behalf even standing up to the mother to say no when Holly disagreed > with what wanted. He was very patient communicating with her and > tried multiple avenues before finding the most efficient route with the > alphabet board. You can tell is still peeved about using an alphabet > board but she's been trying. > > She still is not eating or drinking - and she's making a big stink about > it. She is dying for a drink and solid foods. She has been having an upset > stomach and still have her on feeding tube for a while longer before trying > a liquid diet, hopefully later this week. asked to go outside this > afternoon but she is not using a portable ventilator. They will try to get a > portable vent tomorrow to bring her outside if the weather is still good. > > is frustrated with the slow process and wants to get out of hospital > as soon as possible. Her dad was great giving her pep talks about staying > positive and making plans for when she does get out. wants a solid > time line of when she can get a private room out of ICU and then look > forward to getting home but, understandably, no one will give her any dates. > Her parents estimate that it will be 2 weeks at most until she's home if she > continues to recover at this speed. > > She has been seeing some visitors and she is asking to see more people. It > still says " family only " on her board but I heard that her attendant/friend > Eliina will be going back on Tuesday. One of 's friends from my area > had me bring down a care package. Among other things, indulged in > some lip balm and was psyched! > > I can't say how happy I am with today's visit. I know there's a lot to be > said from 's end still and a lot of emotional aspects that aren't yet > being handled; but to see her smile and laugh, to have her up in her chair, > to be off her medication, to have her advocate on her on behalf - it's just > incredible! I feel more calm. > > She is expecting my visit again next Sunday. > > > > ------------------------------------ > > A FEW RULES > > * The list members come from many backgrounds, ages and beliefs So all > members most be tolerant and respectful to all members. > > * Some adult language and topics (like sexual health, swearing..) may > occur occasionally in emails. Over use of inappropriate language will > not be allowed. If your under 16 ask your parents/gaurdian before you > join the list. > > * No SPAMMING or sending numerous emails unrelated to the topics of > spinal muscular atrophy, health, and the daily issues of the disabled. > > Post message: > Subscribe: -subscribe > Unsubscribe: -unsubscribe > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 10, 2009 Report Share Posted May 10, 2009 Excellent!! ~a From: Kendra <kendranicole@...> Subject: , Part IV Date: Sunday, May 10, 2009, 10:32 PM Yay - I got to see my woman again today and she's looking amazing! is receiving 4 breaths per minute from the ventilator and breathing on her own the rest of the time. BP steady at 86 today; vent O2 at 35. She was up in her wheelchair for 45 minutes today, off her pain medication for most of my 2 hour visit, and even got off the ventilator for 15 minutes! Still no voice. Had some issues this morning with bleeding around the trach opening, so they eased off blood thinners for the day. She wanted to shoot the shit for most of my visit - talk about work, what's going on during my week, t.v., and just general -Kendra conversation. Her parents and brother were there for my entire visit so it was difficult to talk about much else. She had a difficult time using her iPhone and writing is still tedious. We typed a bit back and forth on the laptop I brought about her care. Her mother kept coming over to read over our shoulder and she kept telling her mother to get away. We ended our conversation prematurely due to the lack of privacy. was concerned that she was told the doctor's consulted with Dr. Wang at Stanford and was told that he approved of the vent. She believes this is a lie and thinks they are still not consulting with SMA specialists. However, she was feeling good about the care she was receiving. She's been advocating for herself, argued with the doctors to start listening to her about what she wants and they have been listening. Her pain meds are adjusted when she asks. She has posts all over her ICU room to ensure that nurses leave with her iPhone and call button. She's been able to watch some television, too. Her dad has been able to get in to be with her now that he isn't sick anymore, and he was quite the advocate on her behalf even standing up to the mother to say no when Holly disagreed with what wanted. He was very patient communicating with her and tried multiple avenues before finding the most efficient route with the alphabet board. You can tell is still peeved about using an alphabet board but she's been trying. She still is not eating or drinking - and she's making a big stink about it. She is dying for a drink and solid foods. She has been having an upset stomach and still have her on feeding tube for a while longer before trying a liquid diet, hopefully later this week. asked to go outside this afternoon but she is not using a portable ventilator. They will try to get a portable vent tomorrow to bring her outside if the weather is still good. is frustrated with the slow process and wants to get out of hospital as soon as possible. Her dad was great giving her pep talks about staying positive and making plans for when she does get out. wants a solid time line of when she can get a private room out of ICU and then look forward to getting home but, understandably, no one will give her any dates. Her parents estimate that it will be 2 weeks at most until she's home if she continues to recover at this speed. She has been seeing some visitors and she is asking to see more people. It still says " family only " on her board but I heard that her attendant/friend Eliina will be going back on Tuesday. One of 's friends from my area had me bring down a care package. Among other things, indulged in some lip balm and was psyched! I can't say how happy I am with today's visit. I know there's a lot to be said from 's end still and a lot of emotional aspects that aren't yet being handled; but to see her smile and laugh, to have her up in her chair, to be off her medication, to have her advocate on her on behalf - it's just incredible! I feel more calm. She is expecting my visit again next Sunday. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 10, 2009 Report Share Posted May 10, 2009 Thanks for the detail kendra. I¹m glad ppl at the hospital are finally listening! On 5/10/09 9:33 PM, " Kendra " <kendranicole@...> wrote: > > > > > > Yay - I got to see my woman again today and she's looking amazing! is > receiving 4 breaths per minute from the ventilator and breathing on her own > the rest of the time. BP steady at 86 today; vent O2 at 35. She was up in her > wheelchair for 45 minutes today, off her pain medication for most of my 2 hour > visit, and even got off the ventilator for 15 minutes! Still no voice. Had > some issues this morning with bleeding around the trach opening, so they eased > off blood thinners for the day. > > She wanted to shoot the shit for most of my visit - talk about work, what's > going on during my week, t.v., and just general -Kendra conversation. > Her parents and brother were there for my entire visit so it was difficult to > talk about much else. She had a difficult time using her iPhone and writing is > still tedious. We typed a bit back and forth on the laptop I brought about her > care. Her mother kept coming over to read over our shoulder and she kept > telling her mother to get away. We ended our conversation prematurely due to > the lack of privacy. was concerned that she was told the doctor's > consulted with Dr. Wang at Stanford and was told that he approved of the vent. > She believes this is a lie and thinks they are still not consulting with SMA > specialists. However, she was feeling good about the care she was receiving. > > She's been advocating for herself, argued with the doctors to start listening > to her about what she wants and they have been listening. Her pain meds are > adjusted when she asks. She has posts all over her ICU room to ensure that > nurses leave with her iPhone and call button. She's been able to watch > some television, too. Her dad has been able to get in to be with her now that > he isn't sick anymore, and he was quite the advocate on her behalf even > standing up to the mother to say no when Holly disagreed with what > wanted. He was very patient communicating with her and tried multiple avenues > before finding the most efficient route with the alphabet board. You can tell > is still peeved about using an alphabet board but she's been trying. > > She still is not eating or drinking - and she's making a big stink about it. > She is dying for a drink and solid foods. She has been having an upset stomach > and still have her on feeding tube for a while longer before trying a liquid > diet, hopefully later this week. asked to go outside this afternoon but > she is not using a portable ventilator. They will try to get a portable vent > tomorrow to bring her outside if the weather is still good. > > is frustrated with the slow process and wants to get out of hospital as > soon as possible. Her dad was great giving her pep talks about staying > positive and making plans for when she does get out. wants a solid time > line of when she can get a private room out of ICU and then look forward to > getting home but, understandably, no one will give her any dates. Her parents > estimate that it will be 2 weeks at most until she's home if she continues to > recover at this speed. > > She has been seeing some visitors and she is asking to see more people. It > still says " family only " on her board but I heard that her attendant/friend > Eliina will be going back on Tuesday. One of 's friends from my area had > me bring down a care package. Among other things, indulged in some lip > balm and was psyched! > > I can't say how happy I am with today's visit. I know there's a lot to be said > from 's end still and a lot of emotional aspects that aren't yet being > handled; but to see her smile and laugh, to have her up in her chair, to be > off her medication, to have her advocate on her on behalf - it's just > incredible! I feel more calm. > > She is expecting my visit again next Sunday. > > > > >>> Quote Link to comment Share on other sites More sharing options...
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