I came back to Kristi's blog today thinking that it would be my last. This is the one year anniversary of her illness. It was a beautiful sunny fall day and I went for a nice bike ride to enjoy it. I spent most of the ride reflecting on what I have learned about myself, my daughter, my family and my friends.
First an update on Kristi. She is doing great - a few minor unresolved issues but nothing that she won't work through. She still has very little feeling in her right foot and cannot lift her toes. As the body is a system, this is causing some issues that need attending to. We had an appointment to have the nerve tested to see if was still viable. We had been to two other doctors who were recommending surgery and who referred us to yet another doctor. Doctor #3 told us that he believed that the nerve was coming back, reminded Kristi of what a slow process it was, and told her in no uncertain terms "to get her fanny back to work". Too soon to talk about the surgery - wait at least another 6 months. YAHOO! With that said, he did not see any reason that she wouldn't ski this year. Huge smile on her face and a renewed commitment on her part. While the nerves do regenerate, the process is very slow - patience!
She is enrolled in school and is taking a full load. She is happy and enjoying being around her peers. She has made numerous new and fun friends. (Good thing because she was definitely sick of me) She also works at the winery a few days a week. Basically, just getting back to life.
Mark said to me today that I should write a final blog and close the and close the chapter on what has clearly been a very difficult year. With any hardship - survival is what we do - we learn and we become stronger as is clearly the case with me and my family.
So here is what I have learned; the power of the human spirit is immeasurable and in Kristi's case that is one of the reasons that she is still here. She defied all odds with amazing determination and positive energy and has proven herself as a force to reckon with. The power of prayer - there are not enough heartfelt thank yous to all that prayed for us and then for asking people who didn't even know us to pray for us. I know that Kristi's prayer chain must have circled the earth. I BELIEVE in the power of prayer and know that without it, Kristi may not be here. The power of love and friendship: I felt it every day and it filled me up so that I could face whatever challenge came my way. Thank you to our very dear (and thankfully, large) family who made sure that I was never alone and all of the wonderful friends who did the same. We are so blessed and touched. I know that I speak for Kristi, and all of her family when I say that we are changed forever - FOR THE BETTER!
Love to all of you and thank you for standing with us! Maybe one more blog - I think a family photo from the top of Sun Valley (our traditional Christmas trek) would be an appropriate last blog!
Thursday, August 19, 2010
I came back to Kristi's blog today thinking that it would be my last. This is the one year anniversary of her illness. It was a beautiful sunny fall day and I went for a nice bike ride to enjoy it. I spent most of the ride reflecting on what I have learned about myself, my daughter, my family and my friends.
First an update on Kristi. She is doing great - a few minor unresolved issues but nothing that she won't work through. She still has very little feeling in her right foot and cannot lift her toes. As the body is a system, this is causing some issues that need attending to. We had an appointment to have the nerve tested to see if was still viable. We had been to two other doctors who were recommending surgery and who referred us to yet another doctor. Doctor #3 told us that he believed that the nerve was coming back, reminded Kristi of what a slow process it was, and told her in no uncertain terms "to get her fanny back to work". To soon to talk about the surgery - wait at least another 6 months. YAHOO! With that said, he did not see any reason that she wouldn't ski this year. Huge smile on her face and a renewed commitment on her part. While the nerves do regenerate, the process is very slow - patience!
She is enrolled in school and is taking a full load. She is happy and enjoying being around her peers. She has made numerous new and fun friends. (Good thing because she was definitely sick of me) She also works at the winery a few days a week. Basically, just getting back to life.
Mark said to me today that I should write a final blog and close the chapter on what has clearly been a very difficult year. With any hardship - survival is what we do - we learn and we become stronger as is clearly the case with me and my family.
So here is what I have learned; The power of the human spirit is immeasurable and in Kristi's case that is one of the reasons that she is still here. She defied all odds with amazing determination and positive energy and has proven herself as a force to
Monday, November 15, 2010
Monday, June 21, 2010
June 21st
Wow another month has gone by.... Today is Steven'a 26th birthday where has the time gone? I am so proud of how he has grown up! Milestones definetely make me miss Colorado and all of the wonderful friends that I have there!!!!
Kristi is doing great - getting stronger everyday and working hard to get her life back!!! She is still skinney and we don't seem to be making much progress on getting those lbs back on her. She is working on 6 digits on the scale. She is as busy as can be - riding almost every day (which gives her great joy) going to physical therapy and hand therapy and working with a private trainer trying to build back some muscle. She is also working 2 days a week at the winery and taking classes on-line trying to get back to school. She is determined to go back to school in September and graduate in June. I am nervous that she isn't strong enough - of course I am - and I don't really want her to go back but....not my decision! She gets a little down, she has now lost most of her hair (like someone who has had chemo) and won't wear a wigg but looks cute hats. I know that she is wondering if her leg and foot will ever come back. but as she says, she will just have to figure out how to do everything she wants without it and I have no doubt that she will!
For those of you who like horses and know Krisit as a rider see the attached video of her and Stromie -from today. Just baby fences but really a big deal just to get around. Note the smile.
Kristi is doing great - getting stronger everyday and working hard to get her life back!!! She is still skinney and we don't seem to be making much progress on getting those lbs back on her. She is working on 6 digits on the scale. She is as busy as can be - riding almost every day (which gives her great joy) going to physical therapy and hand therapy and working with a private trainer trying to build back some muscle. She is also working 2 days a week at the winery and taking classes on-line trying to get back to school. She is determined to go back to school in September and graduate in June. I am nervous that she isn't strong enough - of course I am - and I don't really want her to go back but....not my decision! She gets a little down, she has now lost most of her hair (like someone who has had chemo) and won't wear a wigg but looks cute hats. I know that she is wondering if her leg and foot will ever come back. but as she says, she will just have to figure out how to do everything she wants without it and I have no doubt that she will!
For those of you who like horses and know Krisit as a rider see the attached video of her and Stromie -from today. Just baby fences but really a big deal just to get around. Note the smile.
Tuesday, May 18, 2010
May 18th - I've been a bad blogger
Wow - Can't believe that I have been away from this for so long (Is it really 6 weeks) We are all just getting better!!! It has been 6 months (+ a few days) since everything came crashing down and look how far we have come!!! It has with out a doubt been the hardest 6 months of my life but things are all going in the right direction.
Kristi is back riding a little and working at going back to school in September. She was just down in San Luis meeting with her counselor and mapping out what she needs to do to graduate. She is very determined - I (of course) am a little worried about her going back there.
She is riding again - playing around on cutting horses - something that she has never done before but having a good time with it. She recently cut her first cow, feel off. Worried everyone that she might have been hurt - but in her usual style she brushed it off and got back on. Also trotting around on her horse Storm plus working with a few little pones. Since she still only weights a little bit of nothing she is the perfect person to work the little guys. She is bummed because most of her hair has fallen out but it is already growing back. This is something that has just happened recently but is not unexpected given how sick she was and all of the crazy drugs she was on.
She continues to work at getting stronger but is really struggeling to gain weight but we are going to try a nutritionist. She is going to take some classes this summer to get her mind going again. She still goes to Physical therapy an hand therapy 2x per week. Her hand is really coming along and though she doesn't have full use yet, she has regained most, if not all of the feeling. Still struggling with the right foot - it is still numb but she says that the feeling is moving down. We were told that it will take up to two years to get this back. Even if she doesn't, she just has a little limp but she can ski and ride horses too- so accoring to Kristi it doesn't really matter.
So...we just keep working, praying and moving forward. We thank God every day for where we are and that we still have our family in tact!!! We are so very blessed! I also think of all of you, and silently thank you too!
I do have one more favor to ask - Do any of you know anyone that could help Kristi get on the show "What Not To Wear" We have decided that she could use a little help in that department. Skinny, in need of a new hair style and look at those outfits - don't you think that they will bite on that one. (HEHEHE)
I do have one more favor to ask - Do any of you know anyone that could help Kristi get on the show "What Not To Wear" We have decided that she could use a little help in that department. Skinny, in need of a new hair style and look at those outfits - don't you think that they will bite on that one. (HEHEHE)
Love you all! Jayme
Wednesday, April 7, 2010
To long since my last blog
My apologies for not having visited lately. It is so inept to say that we are busy (rude too, who isn't!) Needless to say we are all working hard - Kristi, Mark and myself too-to get our rythem back. I am trying to get my head back around work and also get Krisit to all of her appointments and activities. (I had forgotten what is was like when our children didn't have driver licenses) Very time consuming at best!!! She has been having 9+ appointments a week but as of Monday we will go to 4 and then it is up to us to suppliment treatment with other healing activities.
Kristi is doing amazingly well - if you need to see a miricle just come visit! We had this great appointmnt last week with a new doctor and she told Kristi that she expected her to have a full recovery. She described her as a lightening bolt. (How quickly she is improving) Now... a full recovery does not mean that all will be the same for her - she will most likely have some short term memory and focus issues that she will have to learn to navigate but there are so many good tools out there. Also, still no feeling in her right foot and lower leg but I saw her ride the other day and you would never know that anything happened; she may have to take up dressage but she is riding. etting on is the hardest part. As of today -not strong enough to jump. DA!!! She has only been out of a wheel chair for 5-6 weeks but she is riding, one of her big goals!She tells me she will be trooting "XXs" very soon
Her pain, thankfully, is much better! She jokingly told me that she wants to try and ski this weekend - joking aside, I know that she is not. Call me a helicopter parent but I won't be available to drive her. (hehe). Her therapists already think that I let her do but to much and am crazy to let her ride but it is so good for her soul what can I say.
BAH... I don't beleive that I should tell her what she can't do and she is determined to do it all!!!
She did walk 1/2 mile the other day, it may not seem like much but it really was. Unfortunately, her feet are so skinny and have no padding that they really hurt her today and she had to lay low. Have you ever heard of your feet getting so thin that there is no padding for your bones? We are working hard to get some weight on her. We had a Dr appointment last week (different Doctor), ran lots of tests and her blood chemistry appears normal so she just needs to eat more. Easier said than done; after not eating for so long her stomach has shrunk so her meal size is really small.
Kristi - if you read this -three servings of ice cream a day! Who ever thought that putting weight on, or in this case, just not losing it, would be so difficult?
She has also been going to Pilate's which she loves. We all recognize how much atrophy our muscles have when they go unused but I never realized how stiff you can get. Pilate's is great because it works both strength and stretching. She says that she can feel her body working to compensate for the weakness and the lack of feeling.
Kristi is doing so well!!! Lots of work still ahead of us - they say two years- but we are giddy with joy knowing that we have dodged a bullet. We went to San Luis last weekend and had a great time. We visted the hospital and all of the loving people that took such good care of Krisit; it was joyous!!! Also, it was wonderful to see those that became our great friends and took care of not only Krisit, but all of her family!! Their love and caring will never be forgotten.
What a journey we have made - the world seems a little brighter and we are all OK!!!
WE MADE IT -family in tact!
Love you all, Jayme
Kristi is doing amazingly well - if you need to see a miricle just come visit! We had this great appointmnt last week with a new doctor and she told Kristi that she expected her to have a full recovery. She described her as a lightening bolt. (How quickly she is improving) Now... a full recovery does not mean that all will be the same for her - she will most likely have some short term memory and focus issues that she will have to learn to navigate but there are so many good tools out there. Also, still no feeling in her right foot and lower leg but I saw her ride the other day and you would never know that anything happened; she may have to take up dressage but she is riding. etting on is the hardest part. As of today -not strong enough to jump. DA!!! She has only been out of a wheel chair for 5-6 weeks but she is riding, one of her big goals!She tells me she will be trooting "XXs" very soon
Her pain, thankfully, is much better! She jokingly told me that she wants to try and ski this weekend - joking aside, I know that she is not. Call me a helicopter parent but I won't be available to drive her. (hehe). Her therapists already think that I let her do but to much and am crazy to let her ride but it is so good for her soul what can I say.
BAH... I don't beleive that I should tell her what she can't do and she is determined to do it all!!!
She did walk 1/2 mile the other day, it may not seem like much but it really was. Unfortunately, her feet are so skinny and have no padding that they really hurt her today and she had to lay low. Have you ever heard of your feet getting so thin that there is no padding for your bones? We are working hard to get some weight on her. We had a Dr appointment last week (different Doctor), ran lots of tests and her blood chemistry appears normal so she just needs to eat more. Easier said than done; after not eating for so long her stomach has shrunk so her meal size is really small.
Kristi - if you read this -three servings of ice cream a day! Who ever thought that putting weight on, or in this case, just not losing it, would be so difficult?
She has also been going to Pilate's which she loves. We all recognize how much atrophy our muscles have when they go unused but I never realized how stiff you can get. Pilate's is great because it works both strength and stretching. She says that she can feel her body working to compensate for the weakness and the lack of feeling.
Kristi is doing so well!!! Lots of work still ahead of us - they say two years- but we are giddy with joy knowing that we have dodged a bullet. We went to San Luis last weekend and had a great time. We visted the hospital and all of the loving people that took such good care of Krisit; it was joyous!!! Also, it was wonderful to see those that became our great friends and took care of not only Krisit, but all of her family!! Their love and caring will never be forgotten.
What a journey we have made - the world seems a little brighter and we are all OK!!!
WE MADE IT -family in tact!
Love you all, Jayme
Sunday, March 21, 2010
Sunday - March 21st
Its been three weeks and 2 days since Kristi came home from the hospital and a little over 4 and 1/2 months since she got sick. What a journey - today Kristi and I were talking about how far she has come - 1 month ago she was not walking; today she uses her cane but never her wheel chair or walker. She continues to struggle with intense pain but that too seems to be lessening and the doctors tell us that as she continues to get stronger the pain should settle down.
As of yesterday she added on more therapy - Hep pa-therapy; yes she went for ride yesterday. A fat little pony, quit lazy, walked her around on a lunge line. A double edged sword but this ride was for her soul and to help her build strength, especially her core. She was exhausted afterwards but left with her next "lesson" scheduled. She rode bareback with a vaulting pad that has handles instead of reigns and she was stronger than the therapist anticipated (even got to do a little sitting trot) She is still very weak but is getting stronger ever day. When she gets sad and frustrated I try to remind her where she has come from and that this is a process that you just have to muscle through. We have been told that it takes 3-4 days of work for every day that you spend in bed, to get back to where you were before. Yeep - that's a year but as hard as Kristi is working I will bet she is back sooner!
She is worried about her short-term memory but I have noticed improvement there as well. We work lots of Sudoku and cross-word puzzles together. She is going to take some summer school classes at the junior college up the street. This will give her an opportunity to test herself and get back in the groove. She will then decide whether to go back to school in September or January - either way, she is determined to go back and graduate.
All and all - we are "hanging" tough!!
Lots of love!
Jayme
PS - love your comments and I will respond to them directly.
As of yesterday she added on more therapy - Hep pa-therapy; yes she went for ride yesterday. A fat little pony, quit lazy, walked her around on a lunge line. A double edged sword but this ride was for her soul and to help her build strength, especially her core. She was exhausted afterwards but left with her next "lesson" scheduled. She rode bareback with a vaulting pad that has handles instead of reigns and she was stronger than the therapist anticipated (even got to do a little sitting trot) She is still very weak but is getting stronger ever day. When she gets sad and frustrated I try to remind her where she has come from and that this is a process that you just have to muscle through. We have been told that it takes 3-4 days of work for every day that you spend in bed, to get back to where you were before. Yeep - that's a year but as hard as Kristi is working I will bet she is back sooner!
She is worried about her short-term memory but I have noticed improvement there as well. We work lots of Sudoku and cross-word puzzles together. She is going to take some summer school classes at the junior college up the street. This will give her an opportunity to test herself and get back in the groove. She will then decide whether to go back to school in September or January - either way, she is determined to go back and graduate.
All and all - we are "hanging" tough!!
Lots of love!
Jayme
PS - love your comments and I will respond to them directly.
Tuesday, March 16, 2010
March 16th
Mark has been giving me a little grief because I have not been very diligent about keeping all of you updated. The truth is these last few weeks have been emotionally draining, very exhausting and its been harder than usual for me to focus on the positives- it has definitely been a whirlwind! Not only does Kristi need full time care but she has 8 therapy appointments a week and at least one doctor appointment.She also started an "adaptive" swim program this week which she loves! It helps her manage her pain while making her strong. It feels like just managing her schedule is a full time job!
She is in intense pain and it is very disabling (we are working on some new strategies for managing)and she often wakes up crying 2 or more times a night. The Doctors tell her that as she gets stronger it should lessen but it may be something that she deals with all of her life. She has more cognitive issues, especially short term memory and attention deficits, than I had previously realized but we remain hopeful that it will improve. When I ask the medical staff what to expect in terms of improvement in this area, they are very vague and not necessarily very positive. (So many unknowns in brain injuries)She still has a great deal of weakness in both her right hand and lower leg and foot but she has a really great brace that helps her walk. Improvement in this area is also about 50/50 but in terms of statistics, Kristi continually beats the odds so I am betting on her!!!
Most of the time her spirits stay positive but she misses her friends and is pretty lonely up here - she doesn't have many relationships in this area as she never lived here. We are working on ways to get her involved in the community and she did go with her therapisttoday to enroll in the handicapped program at our local junior college. Due to budget cuts scheduling classes is very difficult but she will get priority this way. She just wants to take something fun and is very interested in cooking classes. I think that she will take a chocolate making class - maybe she will gain a few pounds too! Speaking of that, we are working hard at getting some weight on her; trying to hit 100 but so far I seem to be the only one feeling the effects of this. OPPS! OH WELL!
I'll try to write sooner - miss seeing all of you!!!
Love Jayme
She is in intense pain and it is very disabling (we are working on some new strategies for managing)and she often wakes up crying 2 or more times a night. The Doctors tell her that as she gets stronger it should lessen but it may be something that she deals with all of her life. She has more cognitive issues, especially short term memory and attention deficits, than I had previously realized but we remain hopeful that it will improve. When I ask the medical staff what to expect in terms of improvement in this area, they are very vague and not necessarily very positive. (So many unknowns in brain injuries)She still has a great deal of weakness in both her right hand and lower leg and foot but she has a really great brace that helps her walk. Improvement in this area is also about 50/50 but in terms of statistics, Kristi continually beats the odds so I am betting on her!!!
Most of the time her spirits stay positive but she misses her friends and is pretty lonely up here - she doesn't have many relationships in this area as she never lived here. We are working on ways to get her involved in the community and she did go with her therapisttoday to enroll in the handicapped program at our local junior college. Due to budget cuts scheduling classes is very difficult but she will get priority this way. She just wants to take something fun and is very interested in cooking classes. I think that she will take a chocolate making class - maybe she will gain a few pounds too! Speaking of that, we are working hard at getting some weight on her; trying to hit 100 but so far I seem to be the only one feeling the effects of this. OPPS! OH WELL!
I'll try to write sooner - miss seeing all of you!!!
Love Jayme
Wednesday, March 3, 2010
March 3rd
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Things jus't keep getting better! It's almost crazy how quickly her strength improves; we can measure Kristi's improvement daily. She started walking with a cane only on Thursday (just a few steps)and as of date both the wheelchair and walker have been parked. Her spirit remains strong and determined. You can see how far she has come - The first photo is the day she left the rehabilitation hospital, the second is the day she left ICU and the third is Christmas. Love to all Jayme
Sunday, February 28, 2010
Sunday -Feb 28th
WE HAD A GREAT WEEKEND!!!! It was wonderful to finally have Kristi home. She is doing so well - mostly walking with a cane though she does get tired pretty easily. I love that we proved everyone at the rehab hospital wrong; they didn't think that she would be walking when she came home. We still have lots of work to do and tomorrow at 9AM we start with all of her new therapists. She will be working with a PT, OT and Speech Therapist (working on her short-term memory) on a daily basis. We are also going over tomorrow to sign her up for a modified swim program at the nearby college-needless to say, she is working really hard to regain her strength. She remains steadfast in her goals to return to school and graduate, hopefully in September and to ride again. She actually went to a horse show on Saturday to watch and visit a friend. I couldn't be prouder of her as she fights to get her life back -such an inspiring spirit she has!
Love to all - Jayme
PS - I have some great pictures and will try and get them up in the next few days.
Love to all - Jayme
PS - I have some great pictures and will try and get them up in the next few days.
Wednesday, February 24, 2010
Wednesday -Feb 24
CELEBRATE!!! Kristi is coming home on Friday - YAHOO!
Today she walked - climbed the stairs using only a cane. She is so excited to come home but also nervous; she gets sad and scared too when she thinks about her journey - where she has come from and where she still needs to go in order to get her life back. She has come so far but feels like she still has lots of work to do - she is afraid . BUT...I know that she will get there!!!
What a miricle that we are finally here.
Love you! Jayme
Today she walked - climbed the stairs using only a cane. She is so excited to come home but also nervous; she gets sad and scared too when she thinks about her journey - where she has come from and where she still needs to go in order to get her life back. She has come so far but feels like she still has lots of work to do - she is afraid . BUT...I know that she will get there!!!
What a miricle that we are finally here.
Love you! Jayme
Thursday, February 18, 2010
Wednesday - Feb 17
Kristi just keeps getting better on all levels. We were talking to her Doctor today and she has exceeded every goal that was set for her when she came in. Joy, thankful, blessed and relief are just a few of the words that come to mind as we get ready to bring Kristi home next week. I dared ask a "Crystal Ball" question - something I work really hard at not doing - and I actually enjoyed the answer. Yes her doctor believes that Kristi will be ready to go back to school in September - she feels like stamina may be an issue so a light load is advisable, but given how quickly she is getting better "the sky is the limit". Lots of work to do but nothing is insurmountable.
Now that all of her tubes are out she has been able to start swimming and really enjoys that. She is also walking with a walker and tonight we broke the rules as I suggested that she walk (no walker)from the bathroom to her beds. I was there to catch her if she stumbled but other than that it was all her. (and they told her she wouldn't be walking - thank god for her stubbornness it has clearly served her well) She will be coming home on Sunday, just for the day, to make sure that we don't have any issues with her getting around. And, she has gained a full 10 pounds.
Its all good!!!
Lots of love - Jayme
Now that all of her tubes are out she has been able to start swimming and really enjoys that. She is also walking with a walker and tonight we broke the rules as I suggested that she walk (no walker)from the bathroom to her beds. I was there to catch her if she stumbled but other than that it was all her. (and they told her she wouldn't be walking - thank god for her stubbornness it has clearly served her well) She will be coming home on Sunday, just for the day, to make sure that we don't have any issues with her getting around. And, she has gained a full 10 pounds.
Its all good!!!
Lots of love - Jayme
Saturday, February 13, 2010
Saturday - Feb 13
Just left Kristi - we had a fun dinner and then watched the olympics. We were looking forward to the Mens Downhill but unfortunately that was canceled.
She is kind of in an interesting place as she gets ready to come home. (about 10 days from now) She is trying to work really hard to maximize all of her therapies and get as strong as she can but she has been experiencing acute physical pain in her legs and feet the last few days . It is best described as that pain you get when you pull your feet out of your ski boots and they start to defrost only much more intense. The only good news about this is that possibly, the nerves are waking up. She is concerned that she won't regain use of her right hand and she is anxious about going home as she doesn't feel that she is strong enough or independent enough. She would like to be walking and is very close. She is also worried about her lack of short-term memeory and her ability to concentrate for periods of time. (Basically - she is afraid that she won't get all of herself back)
She is working to put all that she has gone through into prospective and try to figure out where to start rebuilding her young life. The isolation in the San Jose Hospital has also been hard - most of her friends are in San Luis Obispo and I know that she misses thier visits. If any of you happen to be driving through San Jose on your way north (maybe to Tahoe or back) I know that she would be cheered by a quick stop. She has been amazingly positive through all of this but now she dealing with a deep sadness and is well enough to be missing her "old life". Her goals remain the same - walk, ride her horse and go back to school and I know that she will get there.
The docs are still trying to figure out this liver issue she is afraid that they still don't know what is making her sick. (valid point) Kristi has come so so far and as critically ill as she was, all of this angst is understandable. One day at a time!!!
A few high spots - they pulled out her last PIC line - no more tubes anywhere - now she can go swimming. Also - broke 100#s today. And...she get stronger every day.
Love you all. Jayme
She is kind of in an interesting place as she gets ready to come home. (about 10 days from now) She is trying to work really hard to maximize all of her therapies and get as strong as she can but she has been experiencing acute physical pain in her legs and feet the last few days . It is best described as that pain you get when you pull your feet out of your ski boots and they start to defrost only much more intense. The only good news about this is that possibly, the nerves are waking up. She is concerned that she won't regain use of her right hand and she is anxious about going home as she doesn't feel that she is strong enough or independent enough. She would like to be walking and is very close. She is also worried about her lack of short-term memeory and her ability to concentrate for periods of time. (Basically - she is afraid that she won't get all of herself back)
She is working to put all that she has gone through into prospective and try to figure out where to start rebuilding her young life. The isolation in the San Jose Hospital has also been hard - most of her friends are in San Luis Obispo and I know that she misses thier visits. If any of you happen to be driving through San Jose on your way north (maybe to Tahoe or back) I know that she would be cheered by a quick stop. She has been amazingly positive through all of this but now she dealing with a deep sadness and is well enough to be missing her "old life". Her goals remain the same - walk, ride her horse and go back to school and I know that she will get there.
The docs are still trying to figure out this liver issue she is afraid that they still don't know what is making her sick. (valid point) Kristi has come so so far and as critically ill as she was, all of this angst is understandable. One day at a time!!!
A few high spots - they pulled out her last PIC line - no more tubes anywhere - now she can go swimming. Also - broke 100#s today. And...she get stronger every day.
Love you all. Jayme
Sunday, February 7, 2010
Kristi Walks!
Kristi asked her therapists if she could try the walker - 3 days later she walked almost 100 yards. She also got to go on her first outing - finally left the hospital to join the world. We went to Macy's and had a great time shoppping. She bought 2 pairs of flat shoes and a pair of boots.Her comment- short girls only have high heels and I don't think I can learn o walk in spikes. (So her!) Her face is still a little puffy from the steroids but as of Friday she is officially weened. Her tenacity and the pace with which she is gaining strength continues to amaze those that work with her. Her spirit inspires us all- she is definitely a miricle!
Lots of love!
Wednesday, February 3, 2010
Sunday, January 31, 2010
January 31,2010
Sorry that I haven't written much lately but the last week has been incredibly frustrating!!! Kristi has been moved back to ICU as they try and figure out what keeps making her sick. The supposition is that there is a bacteria attacking her liver which is causing a secondary infection in her lungs. The family of bacteria is Non-tuberculosis Macro bacterium. This variety is very slow growing and are found virtually everywhere in our environment. They can also remain latent in body for long periods of time. Many types are resistant to antibiotics so we are waiting for more information before we start treatment. We should have DNA tests back on Thursday or Friday. Most likely we will never know how or where she picked this up. o
Through all of this, Kristi remains committed to getting stronger and even though she can't go to her therapies she continues working at getting stronger. She has not lost sight of her goals - walking, riding, skiing and returning to school and graduating.
Time will tell about all of this - hopefully this piece of information will help us understand what made her so sick and get her healthy.
Love to all - Prayers for good health and patience.
Through all of this, Kristi remains committed to getting stronger and even though she can't go to her therapies she continues working at getting stronger. She has not lost sight of her goals - walking, riding, skiing and returning to school and graduating.
Time will tell about all of this - hopefully this piece of information will help us understand what made her so sick and get her healthy.
Love to all - Prayers for good health and patience.
Tuesday, January 26, 2010
Tuesday
Yesterday's procedure went great. They were able to easily access the areas of concern,extract the fluids and biopsy tissues.The culprit appears to be an area on her liver that received trauma (most likely from her seat belt during a car accident that happened at the end of October) that did not heal correctly and became infected. The body produces fluid to protect the area and then walls off the fluid so that it can't go to other areas (much like an overgrown cyst) Typically, they extract the fluid and the area collapses on itself, patient gets antibiotics to control the infection and we are done. We should get the labs back this afternoon or tomorrow morning. They believe that this infected area has been the cause of the ongoing pneumonia.
Kristi is so over "procedures", they cause her severe anxiety and fear and I certainly don't blame her; it is definitely her turn to catch a break as she has gone through more than most of us will in a life time. This acute anxiety is very common with patients who spend long periods of time in hospitals,especially ICU, and is described much like post-traumatic stress.
Kristi is going to be OK and I feel that this recent discover has shed light on the "WHYS" of all of this and her medical team can treat it and we can move on. It has definitely been a long haul and the therapists tell us to plan 3 days of recovery for every day she spends in the hospital. She gets visible stronger everyday.
LUV J
Kristi is so over "procedures", they cause her severe anxiety and fear and I certainly don't blame her; it is definitely her turn to catch a break as she has gone through more than most of us will in a life time. This acute anxiety is very common with patients who spend long periods of time in hospitals,especially ICU, and is described much like post-traumatic stress.
Kristi is going to be OK and I feel that this recent discover has shed light on the "WHYS" of all of this and her medical team can treat it and we can move on. It has definitely been a long haul and the therapists tell us to plan 3 days of recovery for every day she spends in the hospital. She gets visible stronger everyday.
LUV J
Monday, January 25, 2010
Monday January 25
Hi all ,
Kristi is feeling great - the antibiotics have kicked in and they gave her a few units of blood. She is getting stronger everyday and on most days, her spirits are really good. She is determined to walk soon and looks forward to riding and skiing again, whenever that may be. They tell her it will most likely take two years for a full recovery. I am amazed at her resiliancy and calm, positive spirit.
They did not find what they thought on Friday, so today they are moving forward with a deeper level of exploration. They will do a simple surgical proceedure later today that will allow the doctors to have a good look around, biopsey tissues and drain some fluids. Hopefully it will shed some light on all of this but most likely we won't know anything today. Recovery from this should be very quick - only a few days.
Thanks for all- Jayme
Kristi is feeling great - the antibiotics have kicked in and they gave her a few units of blood. She is getting stronger everyday and on most days, her spirits are really good. She is determined to walk soon and looks forward to riding and skiing again, whenever that may be. They tell her it will most likely take two years for a full recovery. I am amazed at her resiliancy and calm, positive spirit.
They did not find what they thought on Friday, so today they are moving forward with a deeper level of exploration. They will do a simple surgical proceedure later today that will allow the doctors to have a good look around, biopsey tissues and drain some fluids. Hopefully it will shed some light on all of this but most likely we won't know anything today. Recovery from this should be very quick - only a few days.
Thanks for all- Jayme
Friday, January 22, 2010
Friday - January 22
Hi All -
Sorry I haven't written but things have been a little tenuous the last few days. Kristi has gotten more infections - lungs, bladder, etc. As we speak she is having an exploratory procedure to try and figure out why she keeps getting sick. The supposition is that she has internal bleeding from her abdominal area - possibly caused from the auto accident that she was in. Hopefully it will be as easy as cauterizing the vein and we can get on with the task at hand. (i.e. building our strength so that she can walk and come home.)
The goods news is the antibiotics have kicked in and her fever is normal. They are really strong so they are making her sick to her stomach but that will pass. Kristi is concerned that she will lose weight and they will put the feeding tube back in. Also - depending on what happens, they are preparing us for the possibility that they may have to move her back to ICU for a few days.
This too will pass and all will be well again!!! Thanks for the prayers - we still need them.
I will update as soon as I know more.
Love - Jayme
Sorry I haven't written but things have been a little tenuous the last few days. Kristi has gotten more infections - lungs, bladder, etc. As we speak she is having an exploratory procedure to try and figure out why she keeps getting sick. The supposition is that she has internal bleeding from her abdominal area - possibly caused from the auto accident that she was in. Hopefully it will be as easy as cauterizing the vein and we can get on with the task at hand. (i.e. building our strength so that she can walk and come home.)
The goods news is the antibiotics have kicked in and her fever is normal. They are really strong so they are making her sick to her stomach but that will pass. Kristi is concerned that she will lose weight and they will put the feeding tube back in. Also - depending on what happens, they are preparing us for the possibility that they may have to move her back to ICU for a few days.
This too will pass and all will be well again!!! Thanks for the prayers - we still need them.
I will update as soon as I know more.
Love - Jayme
Monday, January 18, 2010
January 18th
Its raining really hard today so I am not going to make it to the hospital. But...I received a wonderful call from Kristi and she wanted me to add a few items to her brag list.
1. She walked today! She took 6 steps- with help, but steps never the less.
2. She was able to stand for a few minutes -no hands, no brace, no support of any kind.
When she called she was happily resting and getting ready for round two of PT while eating ice cream out of the carton. She has lost a frightening amount of weight and they have her on a diet of 7,000+ calories a day. (Wouldn't that be fun to bad most of it is through a tube)
We are all beside ourselves with excitement. Thanks for all of those prayers, no doubt they have worked as this has been a long time in coming.
Love - Jayme
1. She walked today! She took 6 steps- with help, but steps never the less.
2. She was able to stand for a few minutes -no hands, no brace, no support of any kind.
When she called she was happily resting and getting ready for round two of PT while eating ice cream out of the carton. She has lost a frightening amount of weight and they have her on a diet of 7,000+ calories a day. (Wouldn't that be fun to bad most of it is through a tube)
We are all beside ourselves with excitement. Thanks for all of those prayers, no doubt they have worked as this has been a long time in coming.
Love - Jayme
Sunday, January 17, 2010
Sunday - January 17th
I'm sitting with Krisit and we were talking about all of her accomplishments in the last week. She has had a few "not so good" days as she just hasn't been feeling very well but she is much better today! Here is what she said:
1. Wheeling down to the gift shop - it is a very long way as this is a very large hospital
2. Making a fist with her right hand (almost)
3. Lots of talking
4. Eating - a little more everyday
5. The feeling is coming back in her right foot
6. Did the muscle flex and there was a bulge in her biceps
7. Able to sit on her own with perfect posture
8 Standing with assistance for almost 15 minutes.
Thats a lot to brag about!!!!
Love to all of you - I'm off to get the ice cream as Kristi
Jayme and Kristi
1. Wheeling down to the gift shop - it is a very long way as this is a very large hospital
2. Making a fist with her right hand (almost)
3. Lots of talking
4. Eating - a little more everyday
5. The feeling is coming back in her right foot
6. Did the muscle flex and there was a bulge in her biceps
7. Able to sit on her own with perfect posture
8 Standing with assistance for almost 15 minutes.
Thats a lot to brag about!!!!
Love to all of you - I'm off to get the ice cream as Kristi
Jayme and Kristi
Thursday, January 14, 2010
Thursday Jan 14th
Everyday is full of surprises and yesterday was bitter sweet. They have set a home date of Feb 17th. YAHOO
I met with Kristi's doctors and team of therapists and needless to say did not hear what I expected. The majority of the conversation was how to fit our home to make it wheelchair accesable- we all thought that Kristi would be walking when she came home but they were not very hopefull. I suspect that Kristi already knew this but is determined to prove them wrong and I would bet money that she will! The other constant comment was that she works harder than most patients and that her attitude is very positive. She is anxious to get into the pool as she thinks that will enable her to walk sooner. We have to get the trechea tube out and healed before she can go into the water and we are hopefull that will happen next week. They also told me that she may never get all of her strength back.( We don't beleive them -good thing she started off so strong and has the determinatin of a mountain goat!)
We've started a pool as to when Kristi takes her first steps - I am betting $10 on Feb 1 and another $10 on Feb 10 for walking multiple steps with the walker!!!!
Love you all!
I met with Kristi's doctors and team of therapists and needless to say did not hear what I expected. The majority of the conversation was how to fit our home to make it wheelchair accesable- we all thought that Kristi would be walking when she came home but they were not very hopefull. I suspect that Kristi already knew this but is determined to prove them wrong and I would bet money that she will! The other constant comment was that she works harder than most patients and that her attitude is very positive. She is anxious to get into the pool as she thinks that will enable her to walk sooner. We have to get the trechea tube out and healed before she can go into the water and we are hopefull that will happen next week. They also told me that she may never get all of her strength back.( We don't beleive them -good thing she started off so strong and has the determinatin of a mountain goat!)
We've started a pool as to when Kristi takes her first steps - I am betting $10 on Feb 1 and another $10 on Feb 10 for walking multiple steps with the walker!!!!
Love you all!
Monday, January 11, 2010
Monday - January 11
Similar to an infant we count the days - (8 weeks and 3 days)
Just left Krisiti - Mark and I took the dogs for a visit and that was fun. She is working really hard to get stronger but..... I can't even tell you have little she is no exaggeration, I think that her calf is the size of my forearm and her thighs aren't much bigger. They have been working to pull off the extra fluids that she was retaining and it seems to be working. At one point we think that she had about 60 pounds - now they think only 10-20. She has been on a combination of lasics and steroids to accomplish this. Also they have upped her feeding by 50%. Tomorrow she is having an x-ray that will follow her swallowing and hopefully she will be cleared to eat. Over the last few days she has gotten small amounts of pudding, jello and tomato soup but is still waiting for her Jamba Juice. She has been working on standing as well as her balance and is now able to move her wheel chair short distances by herself. Her legs are very weak but her arms are getting stronger. A few days ago she couldn't steer her chair straight because one arm was so much weaker than the other but she is getting much better!!! She will walk again.
She also asked me to bring her some books (easy ones please) and is beginning to realize that her short term memory isn't what it used to be. Its kind of funny what she doesn't remember. On the lighter side - she was practicing moving her wheel chair, going around a large table in the common room, and remarked that she was really tired after only two laps - she had done 6. She still thinks Bush is our president and when I asked her who our governor is she didn't know. I gave her a hint - he used to be an actor - she guessed Ronald Reagan. They tell us her brain is just waking up and most everything will come back or that she can relearn it. Her speech is good and she is able to write and spell with proper grammar but is struggling to read. She is much than many of those around her but she is in the brain trauma unit.
High spot - today we met this really cool guy who was going to the special Olympics - handicapped ski racer - Super G. (Paraplegic)
Lots of love! Jayme
Just left Krisiti - Mark and I took the dogs for a visit and that was fun. She is working really hard to get stronger but..... I can't even tell you have little she is no exaggeration, I think that her calf is the size of my forearm and her thighs aren't much bigger. They have been working to pull off the extra fluids that she was retaining and it seems to be working. At one point we think that she had about 60 pounds - now they think only 10-20. She has been on a combination of lasics and steroids to accomplish this. Also they have upped her feeding by 50%. Tomorrow she is having an x-ray that will follow her swallowing and hopefully she will be cleared to eat. Over the last few days she has gotten small amounts of pudding, jello and tomato soup but is still waiting for her Jamba Juice. She has been working on standing as well as her balance and is now able to move her wheel chair short distances by herself. Her legs are very weak but her arms are getting stronger. A few days ago she couldn't steer her chair straight because one arm was so much weaker than the other but she is getting much better!!! She will walk again.
She also asked me to bring her some books (easy ones please) and is beginning to realize that her short term memory isn't what it used to be. Its kind of funny what she doesn't remember. On the lighter side - she was practicing moving her wheel chair, going around a large table in the common room, and remarked that she was really tired after only two laps - she had done 6. She still thinks Bush is our president and when I asked her who our governor is she didn't know. I gave her a hint - he used to be an actor - she guessed Ronald Reagan. They tell us her brain is just waking up and most everything will come back or that she can relearn it. Her speech is good and she is able to write and spell with proper grammar but is struggling to read. She is much than many of those around her but she is in the brain trauma unit.
High spot - today we met this really cool guy who was going to the special Olympics - handicapped ski racer - Super G. (Paraplegic)
Lots of love! Jayme
Wednesday, January 6, 2010
Wednesday - Week 8
YAHOO - It happened! We moved Kristi late yesterday afternoon to a hospital that specializes in Neuro rehabilitation. The goals - talking, walking and eating are at the top of the list. Today and tomorrow we are working with her team of specialists who are evaluating her condition and then on Friday we will all meet together to discuss reasonable goals and time frames. This morning she worked and/or met with a pulmonary doc, neuro doc and liver doc as well as her team of therapists, which include speech, occupational and physical. It was interesting to both of us to see where she was and her comment was that she could do more than she thought. No doubt she will be talking (already is only in a very quite voice) and eating very soon. The speech therapist did a swallow test using both water and chocolate pudding. She enjoyed them both very much and they will slowly start adding some foods to her diet. The occ therapist asked her to dress herself and she did great with her shirt but not so well with the socks - admitedly socks are tough when you only have one hand and it is not your dominate one. The PTs worked to do strength and nerve evaluations and this is clearly where she needs the most work. She aced the memory and cognative thinking tests which is more than just wonderful!
The typical comments where that she is in great shape given what she has gone through but boy is she weak!!! The question is - how much of the weakness is muscular and how much is due to neurological damage. Time will tell, but muscular is much easier to rehab. There are tests that they can do but supposedly they are very painfully so todays plan is to wait for a few weeks and see how she does.(the plan could well change tomorrow) She is also having extreme pain in her feet and legs, this is most likely due to the "awakening" of her nerves and while this is very painful it is also a good sign.
I have been out of touch but it has been really crazy the last few days. I am sure that Kristi has been evaluated by no less than a dozen doctors in the last two days - both on the discharge and the admit side.
If you want to call her she has a direct line into her room at 408- 793- 4467 and she is at the Santa Clara Valley Community Hospital - Special Rehabilitation. She still can't text but I know that she talked to Steven last night on the phone and that he was able to hear her. I wil send her address tomorrow.
Love to all!!!
The typical comments where that she is in great shape given what she has gone through but boy is she weak!!! The question is - how much of the weakness is muscular and how much is due to neurological damage. Time will tell, but muscular is much easier to rehab. There are tests that they can do but supposedly they are very painfully so todays plan is to wait for a few weeks and see how she does.(the plan could well change tomorrow) She is also having extreme pain in her feet and legs, this is most likely due to the "awakening" of her nerves and while this is very painful it is also a good sign.
I have been out of touch but it has been really crazy the last few days. I am sure that Kristi has been evaluated by no less than a dozen doctors in the last two days - both on the discharge and the admit side.
If you want to call her she has a direct line into her room at 408- 793- 4467 and she is at the Santa Clara Valley Community Hospital - Special Rehabilitation. She still can't text but I know that she talked to Steven last night on the phone and that he was able to hear her. I wil send her address tomorrow.
Love to all!!!
Friday, January 1, 2010
Jan 1st, 2010
Happy New Year to All!!!!
We had to take a step back on the weaning Kristi from the vent and gave her a break for a few days. Today we tried again with the new plan to start a little slower. Today she breathed on her own for 2 1/2 hours and we will try for a longer time tomorrow. She did great, lots of exercise and sat up for 3+ hours. She is also working hard to stand on her own and we see marked improvement in her strength. Her attitude is great and she is determined to get off of the ventilator ASAP - she is craving conversation and Jambe Juice.
The best news is that we are scheduled to transfer her on Tuesday, to a hospital closer to home. She will be moving to Santa Clara Valley Medical Center and the facility has a reputation as one of the top accute medical rehabilitation hospitals in the county. She will get 4+ plus hours of physical therapy a day and they have a hand specialist that is supposed to be really great. Kristi is looking forward to the challenge and the change of scenery. My gut tells me that she will be on her feet before we know it. We still have some medical challenges but the list is getting shorter!!!!!
Love to all of you and I hope that you had a joyous holiday season enjoying family and friends!!!
xoxox J
We had to take a step back on the weaning Kristi from the vent and gave her a break for a few days. Today we tried again with the new plan to start a little slower. Today she breathed on her own for 2 1/2 hours and we will try for a longer time tomorrow. She did great, lots of exercise and sat up for 3+ hours. She is also working hard to stand on her own and we see marked improvement in her strength. Her attitude is great and she is determined to get off of the ventilator ASAP - she is craving conversation and Jambe Juice.
The best news is that we are scheduled to transfer her on Tuesday, to a hospital closer to home. She will be moving to Santa Clara Valley Medical Center and the facility has a reputation as one of the top accute medical rehabilitation hospitals in the county. She will get 4+ plus hours of physical therapy a day and they have a hand specialist that is supposed to be really great. Kristi is looking forward to the challenge and the change of scenery. My gut tells me that she will be on her feet before we know it. We still have some medical challenges but the list is getting shorter!!!!!
Love to all of you and I hope that you had a joyous holiday season enjoying family and friends!!!
xoxox J
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