Dear Family and Friends,
We hope everyone had a wonderful Thanksgiving holiday—we all have a lot to be grateful for. We are pleased to send this update to all of you—to let you know that Laree is doing well. She is still paralyzed from the waste down and has little movement in her hands and totally dependent on skilled nursing services but she is off all of the life support systems and monitors now. She is talking, smiling and eating (although she still has a feeding tube, it is scheduled to be removed soon), her pain level (although still there) has greatly diminished along with the hallucinations. Now when she is moved and repositioned by the nurses she does not cry out in pain. We are so relieved she can communicate with us and advocate much in her own behalf.
Some of our family members have been traveling the greater Seattle area visiting some care/rehab facilities in order to find the best place for LaRee’s next phase of care. Although her body has not completely healed she will start the rehabilitation process now. LaRee has progressed so aggressively and is doing so well that she can skip the skilled nursing facility and go straight to the rehab facility. This is incredible news!!! She was transferred to the University of Washington Hospital yesterday we have been told that this rehab facility is one of the top two in the northwest. This facility is awesome and so wonderful!!!! Within the first two hours of her arrival (yesterday) she was examined by two physical therapists a Dr. of physical therapy her (new) regular Dr. a speech pathologist and occupational therapist and her nurse. All but one knew what Guillain Barre was and where very educated about what to do with Guillain Barre.
She will be setting her own goals and having weekly meetings with the staff. They are getting her dressed each day and taking her to the gym for intense rehab. This will EXHAUST her.
We as a family and LaRee consider this new UW facility to be heaven on earth as LaRee can now be very pro active in her treatment. She does have her own room and is still considered to be in isolation even though she has tested free of MERCA. She needs to test clean of MERCA 3 more times before she will come out of isolation.
LaRee got her first shower last night. In a couple of weeks a test will be done to determine her recovery prognosis. This will help us all understand what type of movement she will get back in her hands and legs! We are hopefull that she will regain all movement and continue to pray for this.
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Thank you for all you are doing for Laree—your prayers, cards, loving thoughts and faith have made all the difference!
Love, LaRee's Family
PS. LaRees visiting hours will be limited during the day as she will be working with her therapists. We will post visiting hours within the day.
Thursday, December 11, 2008
Thursday, November 20, 2008
Update #18
GOOD NEWS LAREE IS OFF THE TRACH!
The following is an email that has been modified it was written by LaRee's sister in law regarding her most recent condition:
We send our greetings and love to you all. It has been awhile since we sent out an update—it seemed like there was little to report and Laree was kind of at a plateau as far as her recovery is concerned…but today is an important day!
In the moments Laree does have her eyes open she does cry and looks like she is unhappy but there have been a few smiles too. We seem to get a different report each time we visit as to Laree’s progress and although she has had what seems like the beginnings of pneumonia (they were testing for it) and is being treated for some infections as a result of being in the hospital – her NIFF scores continued to go up meaning her ability to breathe. The goal has always been to get the Tracheotomy tubes removed by Thanksgiving and at times this has seemed like an impossible goal to attain what with several setbacks in the weaning process. Weaning someone off a respirator is hard work and is exhausting to the patient we have been told as well the weaning process is painful but once the weaning process is accomplished we will have the ability to communicate with Laree once again because once the trach is removed Laree will be able to speak. I will keep this news short and simply tell you, Laree is off the trach!!!
Now that Laree can breathe on her own we can now move past the “life-support” stage and hopefully Laree can start to eat again at some point. (we have been told that she will have to get used to swallowing again and will have to eat simple foods that are ground up – but anything is better than where she has been with the feeding tube in her tummy and now we will move into the rehab stage. Laree still can’t move her arms and legs but we know that is coming and we rejoice with you this day and thank you for all your faith and prayers.
(LaRee is still on large doses of Pain medication and struggles to stay focused for very long so our conversations with her are short and sometimes confusing (due to the medication) but it is still wonderful to hear her voice!)
The following is an email that has been modified it was written by LaRee's sister in law regarding her most recent condition:
We send our greetings and love to you all. It has been awhile since we sent out an update—it seemed like there was little to report and Laree was kind of at a plateau as far as her recovery is concerned…but today is an important day!
In the moments Laree does have her eyes open she does cry and looks like she is unhappy but there have been a few smiles too. We seem to get a different report each time we visit as to Laree’s progress and although she has had what seems like the beginnings of pneumonia (they were testing for it) and is being treated for some infections as a result of being in the hospital – her NIFF scores continued to go up meaning her ability to breathe. The goal has always been to get the Tracheotomy tubes removed by Thanksgiving and at times this has seemed like an impossible goal to attain what with several setbacks in the weaning process. Weaning someone off a respirator is hard work and is exhausting to the patient we have been told as well the weaning process is painful but once the weaning process is accomplished we will have the ability to communicate with Laree once again because once the trach is removed Laree will be able to speak. I will keep this news short and simply tell you, Laree is off the trach!!!
Now that Laree can breathe on her own we can now move past the “life-support” stage and hopefully Laree can start to eat again at some point. (we have been told that she will have to get used to swallowing again and will have to eat simple foods that are ground up – but anything is better than where she has been with the feeding tube in her tummy and now we will move into the rehab stage. Laree still can’t move her arms and legs but we know that is coming and we rejoice with you this day and thank you for all your faith and prayers.
(LaRee is still on large doses of Pain medication and struggles to stay focused for very long so our conversations with her are short and sometimes confusing (due to the medication) but it is still wonderful to hear her voice!)
Tuesday, November 11, 2008
Update #17
LaRee is doing good. She is breathing remarkable well considering how severe her case is. The Dr's have been weaning her more and more each day this past week even with the MRSA. Her two infections have been stabalized for now which is allowing her to progress on her breathing. She is EXHAUSTED from the weaning process and has been sleeping most of the past 3 days with little communication. It is an absolute miracle and answer to prayers that she is able to breath this well at this stage! Yahoo!!! Good Job LaRee!!
Sunday, November 9, 2008
Update #16
(This post has been modified from an email that was sent by LaRee's Step mom on Nov 4, 2008)
Hi Everyone,
The Bad News
As some of you have heard, LaRee has two staph infections in her lungs, MRSA and another one that they are still refining. She ran a fever on Saturday Novemer 1, 2007. They started antibiotics that day and the fever was gone Sunday. Although the cultures showed the presence of the strains, she is not presenting concerning symptoms at this point and is doing well. Her NIF level dipped to 20 Saturday night but was up to 26 last night. The secretions from her lungs are only slightly discolored and not enough to cause much discomfort. The respiratory therapist and nurse today were both optimistic that she will overcome this quickly. They are not weaning her right now but are letting her rest.
The Good News
This was the best we have seen LaRee feeling in the past two weeks. The respiratory therapist helped her talk to us through the tube. He let her have a wet swab in her mouth when she was thirsty, and then she asked if she could have a Dixie Cup of water (nice try, LaRee). She asked if she could go home in a couple of weeks, and she smiled a lot. She told us specific things we could do for her. The last couple of weeks she has mostly been unable to focus enough to do that. There were so many times she has cried and been desperate to communicate, but family, friends, and nurses couldn’t understand what she wanted. Today she was focused and patient with us while we figured out what she wanted. It was a joy to see her feeling better. She is moving her head from side to side now enough to see someone anywhere in the room. Her neck and shoulders are both moving, as well as her rotator cuffs. Her body can regulate her temperature now, so she isn’t hot like she used to be.
We can all keep praying that LaRee will continue to recover smoothly and will be out of discomfort soon.
Hi Everyone,
The Bad News
As some of you have heard, LaRee has two staph infections in her lungs, MRSA and another one that they are still refining. She ran a fever on Saturday Novemer 1, 2007. They started antibiotics that day and the fever was gone Sunday. Although the cultures showed the presence of the strains, she is not presenting concerning symptoms at this point and is doing well. Her NIF level dipped to 20 Saturday night but was up to 26 last night. The secretions from her lungs are only slightly discolored and not enough to cause much discomfort. The respiratory therapist and nurse today were both optimistic that she will overcome this quickly. They are not weaning her right now but are letting her rest.
The Good News
This was the best we have seen LaRee feeling in the past two weeks. The respiratory therapist helped her talk to us through the tube. He let her have a wet swab in her mouth when she was thirsty, and then she asked if she could have a Dixie Cup of water (nice try, LaRee). She asked if she could go home in a couple of weeks, and she smiled a lot. She told us specific things we could do for her. The last couple of weeks she has mostly been unable to focus enough to do that. There were so many times she has cried and been desperate to communicate, but family, friends, and nurses couldn’t understand what she wanted. Today she was focused and patient with us while we figured out what she wanted. It was a joy to see her feeling better. She is moving her head from side to side now enough to see someone anywhere in the room. Her neck and shoulders are both moving, as well as her rotator cuffs. Her body can regulate her temperature now, so she isn’t hot like she used to be.
We can all keep praying that LaRee will continue to recover smoothly and will be out of discomfort soon.
Wednesday, October 29, 2008
Update #15
We have good news to report. On Sunday LaRee's NIF level was a 28! This is unbelievable to see someones breathing levels jump so quickly like this. So Monday they put her on initiated breathing for 2 hours. Meaning LaRee initiates the breath and the machine does the rest. This is the beginning of the weaning process! This process is long and slow building back the muscle strength around the lungs to sustain 24/7 breathing. And this process is exhausting to the patient as well. If a patient is weaned to quickly it could set them back a couple of weeks with muscle weakness, and severally discourage the patient.
LaRees infection that she contracted last week seems to have gone down as of Tuesday, Hurray! And LaRee in general is still the same with all the medication they give her she is pretty tired and confused at times but that is to be expected.
LaRees infection that she contracted last week seems to have gone down as of Tuesday, Hurray! And LaRee in general is still the same with all the medication they give her she is pretty tired and confused at times but that is to be expected.
Friday, October 24, 2008
Update #14
Things are still much the same as they where a week ago. Good days and bad. LaRee is only lucid about 30% of the time due to her drugs. She is still hallucinating. There is not much news to report in the way of movement in her body other then that which has already been reported. Her NIF level is still a 16 or 17 depending on the day. The Dr. has given her medication so she will not remember most of this last week. Thank heavens!
Monday, October 20, 2008
UPDATE #13
Since our last update LaRee has had some really good days and some really bad days that have been a concern to the family. We seem to have worked throught the bad days however and as of this weekend LaRee seems to be comfortable and resting well. She was given a new set of medication on Friday. The Dr. changed the medication on Thursday due to the fact that the morphine drip was loosing its affect. The first medication change caused severe hallucinations and discomfort in LaRee. She struggled to communicate with us due to the amounts of medications she was being given. We are now grateful that the new change in drugs given to her on Friday seems to be working better. Her NIF level has maintained at a 12! Which is very good news. LaRee needs to get to a 30 before she can be weened off of the ventilator.
She slept through the night last night with the exception on 1 bad hallucination! This is progress. They have begun last week to sit LaRee up in a chair for 1 hour each day to help with her physical therapy. This process totally wipes her out and leaves her exhausted.
LaRee seems to have platued right now with her continued progress of movement in her body. The healing takes time however and we will patiently await for the day when she can move her arms and legs!
She slept through the night last night with the exception on 1 bad hallucination! This is progress. They have begun last week to sit LaRee up in a chair for 1 hour each day to help with her physical therapy. This process totally wipes her out and leaves her exhausted.
LaRee seems to have platued right now with her continued progress of movement in her body. The healing takes time however and we will patiently await for the day when she can move her arms and legs!
Tuesday, October 14, 2008
Update #12
LaRee had a great night last night. She slept nearly the whole time with the exception of the nurses who would wake her up routinely. Her new set of medication seems to be working much better for her. It keeps her pain around a 5 and her hallucinations at a controllable level.
The last few days LaRee has had some ups and downs. In fact one of her worst nights was on Friday night due to the fact they where trying out new medication on her. Lets just say that it did not work! LaRee is so very aware she listens carefully to all that goes on around her. For instance she heard the PT say that she would wear her boots every 2 hours for 2 hour to prevent foot drop. Well once our LaRee heard that she decided to keep her boots on for hours at a time for as long as she can until she can't stand it. The other night she left them on for about 13 hours! She is a very obedient patient!
We as a family feel GREAT about the facility we chose for her. Her nurses for the most part are WONDERFUL angels. We still have somebody with LaRee around the clock. And she still very much appreciates having a family member stay through the nights.
As far as LaRee's movement she can nod her head yes and no pretty well now. She can use a lot of her facial muscles to make expressions and she can now make a clicking sound with her mouth. When she does that, it means that she wants something. Which is a big help to us. When we are with LaRee and she is awake there is a lot to do for her. It is like a full time job, rarely sitting down. Her body and nerves are constantly changing the way that they feel and her pain level is constantly moving and shifting. Recently she has enjoyed getting eye drops and chap stick applied every 1/2 hour or so. In addition to communicating with her via an Alphabet chart. We LOVE the alphabet chart, it has allowed us to truly understand LaRee's needs.
LaRee is still on life support. Her body does not move from the neck down. We do not know how long she will need Life support for. We look forward to the day when she can be taken off of the breathing machines and moved to a true Rehabilitation center!
Saturday night LaRee had a special visitor. One of her brothers clients is a man who had GBS about 10 years ago. He and his wife where gracious enough to come to the hospital and spend some time with LaRee. It was so helpful for her to see somebody that lived through it and could walk, talk and move again. The nurse later commented that LaRee seemed more peaceful and attributed a large part of it to this mans visit. We as a family where so grateful that LaRee could have this experience!
When LaRee isn't sleeping she loves for someone to talke to her, read to her and mostly keep her body comfortable with moving it around and lightly rubbing painful areas!
The last few days LaRee has had some ups and downs. In fact one of her worst nights was on Friday night due to the fact they where trying out new medication on her. Lets just say that it did not work! LaRee is so very aware she listens carefully to all that goes on around her. For instance she heard the PT say that she would wear her boots every 2 hours for 2 hour to prevent foot drop. Well once our LaRee heard that she decided to keep her boots on for hours at a time for as long as she can until she can't stand it. The other night she left them on for about 13 hours! She is a very obedient patient!
We as a family feel GREAT about the facility we chose for her. Her nurses for the most part are WONDERFUL angels. We still have somebody with LaRee around the clock. And she still very much appreciates having a family member stay through the nights.
As far as LaRee's movement she can nod her head yes and no pretty well now. She can use a lot of her facial muscles to make expressions and she can now make a clicking sound with her mouth. When she does that, it means that she wants something. Which is a big help to us. When we are with LaRee and she is awake there is a lot to do for her. It is like a full time job, rarely sitting down. Her body and nerves are constantly changing the way that they feel and her pain level is constantly moving and shifting. Recently she has enjoyed getting eye drops and chap stick applied every 1/2 hour or so. In addition to communicating with her via an Alphabet chart. We LOVE the alphabet chart, it has allowed us to truly understand LaRee's needs.
LaRee is still on life support. Her body does not move from the neck down. We do not know how long she will need Life support for. We look forward to the day when she can be taken off of the breathing machines and moved to a true Rehabilitation center!
Saturday night LaRee had a special visitor. One of her brothers clients is a man who had GBS about 10 years ago. He and his wife where gracious enough to come to the hospital and spend some time with LaRee. It was so helpful for her to see somebody that lived through it and could walk, talk and move again. The nurse later commented that LaRee seemed more peaceful and attributed a large part of it to this mans visit. We as a family where so grateful that LaRee could have this experience!
When LaRee isn't sleeping she loves for someone to talke to her, read to her and mostly keep her body comfortable with moving it around and lightly rubbing painful areas!
Tuesday, October 7, 2008
Update #11
Last night LaRee was tired and slept the majority of the time. But when she did manage to wake up she was just as alert as the night before. She would nod yes and no (ever so gently), mouthed the words “Hi” to her brother and was blinking very well. Occasionally when we asked a question there would be no response. However we are so grateful that we can more clearly understand her method of communication. To our understanding she was sleeping on her own and had not been given a drug to help her sleep.
LaRee was transferred today to Regional Hospital in Tuckwilla. This is not “Rehab” this is an offsite ICU type facility called ALTAC “Long term Acute Care” There are only two ALTAC facilities within a 5 state region and they both happen to be located in our state. We are so grateful for that!! Members of our family visited both locations and did some research to pick the best one of the two. We feel confident that we have made the best decision and even managed to secure her a private room!!
I was reading in “Diagnoses to Recovery” last night and found it most interesting. We have discussed this book in previous emails. It was published last year and written by a doctor who actually had GBS. LaRee seems to have one of the more severe cases (according to the book). And one of the main challenges in her recovery will be her mental and emotional well being. Please keep that in mind as you continue to serve, visit and pray for her.
LaRee was transferred today to Regional Hospital in Tuckwilla. This is not “Rehab” this is an offsite ICU type facility called ALTAC “Long term Acute Care” There are only two ALTAC facilities within a 5 state region and they both happen to be located in our state. We are so grateful for that!! Members of our family visited both locations and did some research to pick the best one of the two. We feel confident that we have made the best decision and even managed to secure her a private room!!
I was reading in “Diagnoses to Recovery” last night and found it most interesting. We have discussed this book in previous emails. It was published last year and written by a doctor who actually had GBS. LaRee seems to have one of the more severe cases (according to the book). And one of the main challenges in her recovery will be her mental and emotional well being. Please keep that in mind as you continue to serve, visit and pray for her.
Monday, October 6, 2008
Update #10 Benevolent Account Instructions
Regarding the Benevolence fund set up for Laree at the Bank of America, you should simply be able to go to any branch of the Bank of America and ask to make a deposit to the Laree Keenan Assistance Fund—no account number needed—however if you experience a problem and the banker says they need an account number then see instructions below:
“When someone from another state goes to the bank to make a donation to the LaRee Keenan Assistance Fund, the out-of-state Bank of America cashier taking the deposit needs to call “One Call” within the bank to get the account number. The local bank indicated that it is an extra step, but it should not create a problem”.
“When someone from another state goes to the bank to make a donation to the LaRee Keenan Assistance Fund, the out-of-state Bank of America cashier taking the deposit needs to call “One Call” within the bank to get the account number. The local bank indicated that it is an extra step, but it should not create a problem”.
Update # 9
Laree is about the same in terms of her condition. We are still waiting for test result to determine if secondary complications have developed ie: infections. In the meantime she is being treated with antibiotics. The family had a meeting with the Dr's on Friday to get an update on her condition. When Laree is stabilized she will be moved to an off site hospital where they manage critical care patients w/ respirators. It is like an extension of a hospital but off site. Laree is able to move her head back and forth ever so slightly and blink once for yes and twice for no. Though these activities wear her out quickly and her ability to do so comes and goes through out the day.
On Sunday a family member reported that the respirator therapist announced she had "over breathed" her respirator slightly for a few breaths. This was great news. We know that we have a long road of recovery ahead of us with LaRee but we are grateful for the small moments of communication we get with her now.
LaRee is being taken care of on many fronts right now as her husband had to leave on business for several days. A certified public accountant is handling her financial affairs and her father is assisting with all medical decisions. Some friends are looking to do fundraisers, others are keeping her house clean, all while the building of her new home continues to progress. Her daughter Chloe is staying with a family member while her Dad is away. The family is making sure that life continue's to move forward for LaRee so that she does not worry as she is fully co-hearent and cannot express her concerns regarding all of these matter to us. We give her daily updates as we are sure she has many questions and concerns going through her mind each day. We want to make sure she knows everything is being handled so that she can focus on getting well.
Many, many thanks to all of you!
On Sunday a family member reported that the respirator therapist announced she had "over breathed" her respirator slightly for a few breaths. This was great news. We know that we have a long road of recovery ahead of us with LaRee but we are grateful for the small moments of communication we get with her now.
LaRee is being taken care of on many fronts right now as her husband had to leave on business for several days. A certified public accountant is handling her financial affairs and her father is assisting with all medical decisions. Some friends are looking to do fundraisers, others are keeping her house clean, all while the building of her new home continues to progress. Her daughter Chloe is staying with a family member while her Dad is away. The family is making sure that life continue's to move forward for LaRee so that she does not worry as she is fully co-hearent and cannot express her concerns regarding all of these matter to us. We give her daily updates as we are sure she has many questions and concerns going through her mind each day. We want to make sure she knows everything is being handled so that she can focus on getting well.
Many, many thanks to all of you!
Wednesday, October 1, 2008
Update #8
LaRee is still in Critical Care. She is able to respond Yes or No by blinking! We have seen some slight movement in her neck and mouth as well. However over the last few days LaRee seems to be developing an infection. We are not exactly sure what kind of an infection it is at this point. This is concerning to the extent that LaRee's system is already very weak and an infection could complicate her condition. Our hope is that the infection will be minimal and easily contained so that LaRee may continue on the road to recovery. We will keep you posted on this in the days to come. As we visit LaRee it is a constant reminder to us that she is truly in a fragile state and needs our continued prayers and support. We know that LaRee appreciates all of your support and we as a family communicate the many wonderful emails, cards and well wishes to her on a daily basis.
Please feel free to leave your comments on this blog as we will keep them in a journal for LaRee.
Love,
Her Family
Please feel free to leave your comments on this blog as we will keep them in a journal for LaRee.
Love,
Her Family
Update #7
Recently we received a letter from LaRee's sweet friend. Following is an excerpt from her letter:
I am interested in helping with any fund raising that you might seek to pursue. I know Laree might not want that, but with .......her out of work for so long...please know that there are many, many of us who want to help. Is there an account set up to receive donations for them?
Laree’s husband was made aware of this sweet friends suggestion and gave his consent to the action of setting up a benevolent account in Laree’s name. After her husbands approval an account is now set up at Laree’s Bank. Please note: Any funds received will be allocated to the Keenan family by a Certified Public Accountant to pay for medical expenses and regarded by the family as sacred funds.
Laree’s Benevolent Fund Information:
Deposits can be made at any Bank of America in the continental United States to the:Laree Keenan Assistance Fund
With much grattitude,
LaRee's Family
I am interested in helping with any fund raising that you might seek to pursue. I know Laree might not want that, but with .......her out of work for so long...please know that there are many, many of us who want to help. Is there an account set up to receive donations for them?
Laree’s husband was made aware of this sweet friends suggestion and gave his consent to the action of setting up a benevolent account in Laree’s name. After her husbands approval an account is now set up at Laree’s Bank. Please note: Any funds received will be allocated to the Keenan family by a Certified Public Accountant to pay for medical expenses and regarded by the family as sacred funds.
Laree’s Benevolent Fund Information:
Deposits can be made at any Bank of America in the continental United States to the:Laree Keenan Assistance Fund
With much grattitude,
LaRee's Family
Monday, September 29, 2008
Update #6
We as a family appreciate the many offers of help and concern expressed on behalf of LaRee during this difficult time. As LaRee will be unable to work for an unknown period of time and due to multiple requests we have decided to set up a bank account on behalf of our dear LaRee. Please note that she is unable to enjoy any floral arrangements due to her current condition and recent tracheotomy procedure. Though we deeply appreciate the outpouring of kindness on her behalf.
In the days to follow the family will be posting information regarding an account that will be set up on behalf of LaRee. These funds will be treated with the utmost care and respect and used to assist LaRee in her medical expenses and any necessities needed. Also we ask for your continued prayers on her behalf and want to express our deepest gratitude for the many friends, ward members, associates, co-workers and even strangers who have prayed for her recovery.
Sincerely,
LaRee's Family
In the days to follow the family will be posting information regarding an account that will be set up on behalf of LaRee. These funds will be treated with the utmost care and respect and used to assist LaRee in her medical expenses and any necessities needed. Also we ask for your continued prayers on her behalf and want to express our deepest gratitude for the many friends, ward members, associates, co-workers and even strangers who have prayed for her recovery.
Sincerely,
LaRee's Family
Update #5
Their is a book available called "Bed #10" it is a women's account who had GBS. It is fascinating and is really helping our family to understand exactly what LaRee is experiencing right now. Caroline one of LaRee’s friends told me that she has been trying to buy the book “Bed #10” for the last couple of days. She discovered that the reason it takes so long to get a copy of it is because it is required reading for the nursing/medical program. Since it is the beginning of the school year there has been a rush on these books. We think it is great that this is mandatory reading for the nursing program! Our family was introduced to the book by Bonnie Forbes a friend of Christians (LaRee's sister in law) the story of how this book came into Christians hands in the very hour that it was needed is simply a miracle and divinely inspired. If you can get your hands on it, we recommend reading it as it will help all of LaRee's friends and family better support her through all of this.
On another note:
This last Sunday was a BIG day for all of us. The fact that LaRee could move her head ever so slightly at all after only 9 days is a testimony to the power of so many prayers and much fasting—thank you for uniting with us. The nurse did caution us that these are very small improvements and that LaRee is still in what is considered to be critical condition—but we told the nurse we were willing to celebrate any movement we can get! The exciting thing was that now that she has her eyes open again (off and on) we can actually communicate with her again!
We were able to talk to LaRee and explain what is going on to her—that she has a syndrome and that she will overcome it. Bonnie Forbes who sent us the book Bed number 10 told us- we need to be very clear with LaRee about what is going on so she will not be worried that she is paralyzed permanently. Bonnie also asked us to remind everyone that LaRee is fully aware of everything—only her muscles are temporarily impaired presently but her mental capacity is fully functioning…and that she can hear everything so we as a family all have to remember to include her in every conversation! Since LaRee probably has more questions than any of us about her own condition we are trying hard to make sure she knows that she is expected to return to health.
On another note:
This last Sunday was a BIG day for all of us. The fact that LaRee could move her head ever so slightly at all after only 9 days is a testimony to the power of so many prayers and much fasting—thank you for uniting with us. The nurse did caution us that these are very small improvements and that LaRee is still in what is considered to be critical condition—but we told the nurse we were willing to celebrate any movement we can get! The exciting thing was that now that she has her eyes open again (off and on) we can actually communicate with her again!
We were able to talk to LaRee and explain what is going on to her—that she has a syndrome and that she will overcome it. Bonnie Forbes who sent us the book Bed number 10 told us- we need to be very clear with LaRee about what is going on so she will not be worried that she is paralyzed permanently. Bonnie also asked us to remind everyone that LaRee is fully aware of everything—only her muscles are temporarily impaired presently but her mental capacity is fully functioning…and that she can hear everything so we as a family all have to remember to include her in every conversation! Since LaRee probably has more questions than any of us about her own condition we are trying hard to make sure she knows that she is expected to return to health.
Update #4
LAREE MINI UPDATE:
Just wanted to let you know that LaRee was actually responding to her name today (September 28) which is another small sign of progress. We the family also want to let everyone know that we have started a weekly family fast that began last week and will continue to do so. We as a family would invite all who would like to join with us in fasting and prayer to observe each Sunday as an official fast day for LaRee. We know that LaRee will benefit as we unite together in fasting and prayer and it appears from the last 24-hours we are being blessed in her behalf already.
Just wanted to let you know that LaRee was actually responding to her name today (September 28) which is another small sign of progress. We the family also want to let everyone know that we have started a weekly family fast that began last week and will continue to do so. We as a family would invite all who would like to join with us in fasting and prayer to observe each Sunday as an official fast day for LaRee. We know that LaRee will benefit as we unite together in fasting and prayer and it appears from the last 24-hours we are being blessed in her behalf already.
Update #3
The family has decided from Day one to stay with LaRee around the clock so that she may be comforted continually by her loved ones. This has been a wonderful and humbling experience for us and we are so grateful for the opportunity to be by her side. It is known that with GBS a patient still maintains proper brain function unless (they have been sedated) so as time passes with LaRee she has become very aware of her circumstances. Since she cannot speak to us we have made it a point to constantly be with her and communicate to her what is going on. LaRee is expected to recover to a large extent if not fully over a period of time and we want to make sure she understands that.
During the early morning hours of September 25 we got GREAT NEWS as Dan (LaRee's brother) walked back into LaRee’s room from being out in the hallway and talking to the nurse. Dan said when he looked at LaRee (who still had the gauze pad’s on her eyes) he thought he saw a small movement underneath the gauze…so he removed the pads and then her eyes opened! Dan quickly but gently placed her glasses on and then actually made clear eye contact with her…it was obvious that she was looking at him.
Only family members and a few close friends are allowed to visit at this time due to the fact that LaRee is still in a life-support situation…and needs rest to get better. Considering that LaRee had 5 baby showers when Chloe was born and is loved by the masses, this is a very wise decision! Caroline (Larees friend) joyously reported that LaRee had opened her eyes again during the day September 27.
Having LaRee open her eyes is wonderful but we want to make it very clear to all of you that this represents only a very small improvement—and we need to remember that LaRee is still in critical condition.
This is our update for now. Thank you for your concern, love and prayers.
We know through all of this that our Heavenly Father and Lord Jesus Christ continue to shower blessings down upon our family and we are simply awe of this experience and all it is teaching us. We faithfully acknowledge that all things can work to the good and are a part of our Heavenly Father’s plan for our spiritual growth.
Love to all of you, LaRee's Family
During the early morning hours of September 25 we got GREAT NEWS as Dan (LaRee's brother) walked back into LaRee’s room from being out in the hallway and talking to the nurse. Dan said when he looked at LaRee (who still had the gauze pad’s on her eyes) he thought he saw a small movement underneath the gauze…so he removed the pads and then her eyes opened! Dan quickly but gently placed her glasses on and then actually made clear eye contact with her…it was obvious that she was looking at him.
Only family members and a few close friends are allowed to visit at this time due to the fact that LaRee is still in a life-support situation…and needs rest to get better. Considering that LaRee had 5 baby showers when Chloe was born and is loved by the masses, this is a very wise decision! Caroline (Larees friend) joyously reported that LaRee had opened her eyes again during the day September 27.
Having LaRee open her eyes is wonderful but we want to make it very clear to all of you that this represents only a very small improvement—and we need to remember that LaRee is still in critical condition.
This is our update for now. Thank you for your concern, love and prayers.
We know through all of this that our Heavenly Father and Lord Jesus Christ continue to shower blessings down upon our family and we are simply awe of this experience and all it is teaching us. We faithfully acknowledge that all things can work to the good and are a part of our Heavenly Father’s plan for our spiritual growth.
Love to all of you, LaRee's Family
Update #2
Good Info (Update below)
We are planning on starting a journal/log to track information and to compile daily entries and keeping cards and correspondence we gather. Our hope is that we can create something beautiful to give to LaRee when this journey is over so LaRee can make some sense of the events surrounding her illness and hopefully gain healing from understanding not only information we place in this volume but also providing a physical demonstration of the outpouring of love and support which may aid her to heal faster.
If you want to send a card or letter we have decided that it is best to send it to a local family member so we can ensure it gets to her! Send it to the address below
C/O Fricke
12413 68th Avenue S.E.
Snohomish, Washington. 98296
PLEASE NOTE: It is not possible for LaRee to receive calls at this time or visits from anyone other than a family members – right now it is family only in the ICU L - we can assure you she will need many visits and your sweet support when she can breathe on her own and is sent to recover in the rehabilitation center or at home – she loves all her friends dearly and appreciates your love and concern.
A Guillain-Barre Foundation does exist—a place where we may individually be able to get information as far as resources and support for LaRee or questions and information for ourselves when needed. We did not find a local chapter but did find a national one – see link below.
http://www.gbs-cidp.org/index.html#
GBS/CIDP Foundation International The Holly Building104 1/2 Forrest Avenue Narberth, PA 19072Voice: 610-667-0131 - Fax: 610-667-7036Toll Free: 1-866-224-3301Email: info@gbs-cidp.org
Dear Family & Friends,
LAREE UPDATE #2:
LaRee had a tracheotomy performed on Thursday to replace the respirator (breathing tube going down her throat) that had been in place since last Saturday. Aunt Margo who was watching over her during the day on Thursday said she felt this was a better option for LaRee as she now could rest more peacefully without the ventilation tube.
For the past 4 days we have been unable to communicate with LaRee in any way…she was having the gamma globulin treatments but never opened her eyes as she had done in the past. We were told during the period of the gamma globulin treatments that there was a medication being administered for pain as well as sedation. Now that the gamma treatments are over, the doctors are backing off of the sedation medication to see if we can get any response from LaRee to indicate those treatments are working.
We are planning on starting a journal/log to track information and to compile daily entries and keeping cards and correspondence we gather. Our hope is that we can create something beautiful to give to LaRee when this journey is over so LaRee can make some sense of the events surrounding her illness and hopefully gain healing from understanding not only information we place in this volume but also providing a physical demonstration of the outpouring of love and support which may aid her to heal faster.
If you want to send a card or letter we have decided that it is best to send it to a local family member so we can ensure it gets to her! Send it to the address below
C/O Fricke
12413 68th Avenue S.E.
Snohomish, Washington. 98296
PLEASE NOTE: It is not possible for LaRee to receive calls at this time or visits from anyone other than a family members – right now it is family only in the ICU L - we can assure you she will need many visits and your sweet support when she can breathe on her own and is sent to recover in the rehabilitation center or at home – she loves all her friends dearly and appreciates your love and concern.
A Guillain-Barre Foundation does exist—a place where we may individually be able to get information as far as resources and support for LaRee or questions and information for ourselves when needed. We did not find a local chapter but did find a national one – see link below.
http://www.gbs-cidp.org/index.html#
GBS/CIDP Foundation International The Holly Building104 1/2 Forrest Avenue Narberth, PA 19072Voice: 610-667-0131 - Fax: 610-667-7036Toll Free: 1-866-224-3301Email: info@gbs-cidp.org
Dear Family & Friends,
LAREE UPDATE #2:
LaRee had a tracheotomy performed on Thursday to replace the respirator (breathing tube going down her throat) that had been in place since last Saturday. Aunt Margo who was watching over her during the day on Thursday said she felt this was a better option for LaRee as she now could rest more peacefully without the ventilation tube.
For the past 4 days we have been unable to communicate with LaRee in any way…she was having the gamma globulin treatments but never opened her eyes as she had done in the past. We were told during the period of the gamma globulin treatments that there was a medication being administered for pain as well as sedation. Now that the gamma treatments are over, the doctors are backing off of the sedation medication to see if we can get any response from LaRee to indicate those treatments are working.
Update #1
Dear Family & Friends,
It has been a real whirlwind as you know when our lives turned upside down on September 18, 2008 and our sweet LaRee was hospitalized. Since that time many have wanted an update as we know you are all worried and concerned. We decided to start this blog to communicate regular updates to everyone so we can all share information and unite in prayer, faith and our love with all of you and in behalf of Laree.
UPDATE:
LaRee was diagnosed with a rare disorder called Guillain-Barre Syndrome the morning of September 19. Surprisingly due to the rare occurrence of this Syndrome (1-2 out of every 100,000 / only 4,000 cases per year in the US), there is a lot of helpful information about this on the internet and some pretty good videos on You Tube which explain what this syndrome is. The main thing we can report is that it causes total-body paralysis rapidly. LaRee experienced her first signs of it (numbness in the hands and feet last Wednesday and was placed upon life support by Saturday) in it’s 2nd stage (because it has stages it is called a syndrome). LaRee has received a gamma globulin treatment for the last 5 days and now that course is over we are in a holding pattern—waiting to see if the treatment administered will take effect. The nurse advised us because LaRee’s condition is so acute, she may not show signs of improvement for some time (up to 7 days). We all need to be patient. The kind nurses also advised us last night that they are doing all they can to take care of LaRee and to ensure she does not develop any new or secondary problems. We were also told that in a few days they will have to perform a tracheotomy (the normal protocol) if LaRee is not breathing on her own. There was a rumor that Laree was in a drug-induced coma and this is not true at all – in fact now that the gamma treatment is over they have backed off the drug they were giving her that will likely cause her to forget the last 5 days of anything that happened which we feel is a good thing…now we need her to respond! Any reaction from her of an eye-blink or a toe curl will be cause to celebrate!
It has been a real whirlwind as you know when our lives turned upside down on September 18, 2008 and our sweet LaRee was hospitalized. Since that time many have wanted an update as we know you are all worried and concerned. We decided to start this blog to communicate regular updates to everyone so we can all share information and unite in prayer, faith and our love with all of you and in behalf of Laree.
UPDATE:
LaRee was diagnosed with a rare disorder called Guillain-Barre Syndrome the morning of September 19. Surprisingly due to the rare occurrence of this Syndrome (1-2 out of every 100,000 / only 4,000 cases per year in the US), there is a lot of helpful information about this on the internet and some pretty good videos on You Tube which explain what this syndrome is. The main thing we can report is that it causes total-body paralysis rapidly. LaRee experienced her first signs of it (numbness in the hands and feet last Wednesday and was placed upon life support by Saturday) in it’s 2nd stage (because it has stages it is called a syndrome). LaRee has received a gamma globulin treatment for the last 5 days and now that course is over we are in a holding pattern—waiting to see if the treatment administered will take effect. The nurse advised us because LaRee’s condition is so acute, she may not show signs of improvement for some time (up to 7 days). We all need to be patient. The kind nurses also advised us last night that they are doing all they can to take care of LaRee and to ensure she does not develop any new or secondary problems. We were also told that in a few days they will have to perform a tracheotomy (the normal protocol) if LaRee is not breathing on her own. There was a rumor that Laree was in a drug-induced coma and this is not true at all – in fact now that the gamma treatment is over they have backed off the drug they were giving her that will likely cause her to forget the last 5 days of anything that happened which we feel is a good thing…now we need her to respond! Any reaction from her of an eye-blink or a toe curl will be cause to celebrate!
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