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Wednesday, April 28, 2010
Get Well Soon!
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Happy Birthday
I received a call today from Kathy's sister approx. mid morning. It was a bit of an odd time for Coleen to call, but I knew she was with Kathy so I immediately picked it up. I am always a bit worried when I first pick up, but Coleen let me know that Kathy was moving to a new room further down the hall - 2032, outside of the ventilator wing. A new patient had been admitted and they were moving in on a ventilator and needed Kathy's old room. Kathy and her roommate get along very well so they both moved together to the new room. This move proved to be the beginning of a wonderful day!
Later that morning I received another call from Coleen. This time was the best news yet, Kathy had walked (using a walker) under her own power, a total of about 20 feet!! The 20 feet was over three separate tries. When therapy was over, I got another phone call from Kathy to tell me "I am walking". I was totally blown away and excited for her. Walking is probably the best present Kathy could get today.
Since it is Kathy's 39th birthday we had a small family birthday party with cake and ice cream. By 7:30 Kathy was exhausted and ready for a shower and bed. All in all an awesome day.
Happy Birthday Kath, you are the best partner I could ever ask for and I can't wait for you to come home. I love you.
Monday, April 26, 2010
Monday 4/26
Today started off a bit rough as Kathy was not feeling well and had to miss both of her normally scheduled therapy sessions. By 2:00pm she was finally feeling much better and was able to get into a later therapy session. Missing the two sessions was stressful, it is very obvious that she wants to be in therapy as much as possible and make every bit of progress she can make everyday. Thankfully, her sister Coleen was here for most of the day and helped her through feeling sick, the emotions of missing therapy and missing her "normal" life.
This rough start to the week came on the heels of a very busy Sunday with lots of friends and family visiting for most of the day. Kathy also did a Skype call with her niece who was off to her first prom. Kathy and her niece are very close so Kathy's inability to be there to see this milestone was difficult for both of them. Kathy's resolve always impresses me, just like her need to be in therapy consistently, she is now totally focused on not missing any other big events in the lives of her friends and family. It seems that out of every tough emotional challenge she simply strengthens herself for the next push.
The progression of Kathy's physical strength is subtle but significant. The new thing is her ability to fairly easily use the phone and the super extending TV mounted to the wall behind her bed. As long as the TV and phone are close she is able to use them. Also, we have been joking for weeks that once Kathy was able to operate the controls for the bed we would know she was on her way, of course she know works the controls effortlessly.
The therapy session today included core work and additional strength and dexterity work mostly on her left arm. Kathy's right arm has come along very quickly and she can quite comfortably do most things with the right arm. The left arm is lagging behind the right and the shoulder muscles do not allow her the same range of motion. However, tonight was the first time Kathy lifted her left arm over her head without any help. While I was off to run an errand, Kathy told me she planned to work on the flexibility in her left shoulder. By the time I had returned she was showing off her new ability!
The plan for tomorrow is for Kathy to get back on her feet and work either in the walker or possibly on the parallel bars. Her therapists are not sure if she is ready for the parallel bars, so we will see what happens tomorrow.
Friday, April 23, 2010
Friday Visit
I was invited to join Kathy in her OT therapy today so I arrived a little earlier than normal. At 12:15 I found Kathy in "lunch group" which is normally three to four people who all eat lunch together and practice using utensils and eating independently (therapy starts at 1:00pm). Today lunch group was "lunch Kathy" since she was the only one who showed up. It dawned on me that even though people are in therapy they still have the choice to show up or not show up.
After lunch we were off the the rehab gym. The first goal was to teach me some of the stretches that Kathy does in therapy so that we can do them together over the weekend and when back in the room. I practiced the stretches on Kathy's legs with the therapist keeping a close eye. Kathy's overall range of motion is drastically changed from prior to GBS. She is very tight and it is fairly easy to feel her points of resistance. However, I have been doing stretching with her since she first came off the ventilator and her overall flexibility has already increased from where it was a week and half ago. After we reviewed the stretching regimen, Kathy was given some homework, three interesting tasks for the weekend. 1. Place a rolled up towel behind her back in line with the spine and practice rotating the shoulder blades back and forth around the towel. 2. place change on the table along with a small container and move all of the change from the table into the container. 3. Tear up paper towels. These things all seem simple to me, but they are really difficult for Kathy.
After homework Kathy still had a full OT session. Seated on the end of the mat she was asked to hold a ball and shift the ball from her right side to her left side touching the mat next to her on each rotation. After this it was a modified side plank where she was asked to lean over to her side and rest on her elbow, these looked difficult for her. Last was to sit up straight on the end of the mat and place pillow cases back onto two pillows. The second pillow was heavier than the first. This process really made Kathy tired and she needed quite a few breaks. The therapist paid very close attention to how tired Kathy looked and encouraged regular breaks.
After therapy Kathy received a new wheel chair that had a lower back and no adjustability of the seated angle. This chair requires Kathy to use her own core muscles to sit up straight. She also was instructed to wheel herself out of the gym under her own power. This was really cool to see.
After OT was nap time for a hour or so, then dinner. Kathy and I ate dinner together then took a walk outside around the Kessler campus. The weather and temperature was gorgeous and it was great to get outside for an extended amount of time. Kathy wrapped up the day with a shower, then to bed around 8:30pm.
After lunch we were off the the rehab gym. The first goal was to teach me some of the stretches that Kathy does in therapy so that we can do them together over the weekend and when back in the room. I practiced the stretches on Kathy's legs with the therapist keeping a close eye. Kathy's overall range of motion is drastically changed from prior to GBS. She is very tight and it is fairly easy to feel her points of resistance. However, I have been doing stretching with her since she first came off the ventilator and her overall flexibility has already increased from where it was a week and half ago. After we reviewed the stretching regimen, Kathy was given some homework, three interesting tasks for the weekend. 1. Place a rolled up towel behind her back in line with the spine and practice rotating the shoulder blades back and forth around the towel. 2. place change on the table along with a small container and move all of the change from the table into the container. 3. Tear up paper towels. These things all seem simple to me, but they are really difficult for Kathy.
After homework Kathy still had a full OT session. Seated on the end of the mat she was asked to hold a ball and shift the ball from her right side to her left side touching the mat next to her on each rotation. After this it was a modified side plank where she was asked to lean over to her side and rest on her elbow, these looked difficult for her. Last was to sit up straight on the end of the mat and place pillow cases back onto two pillows. The second pillow was heavier than the first. This process really made Kathy tired and she needed quite a few breaks. The therapist paid very close attention to how tired Kathy looked and encouraged regular breaks.
After therapy Kathy received a new wheel chair that had a lower back and no adjustability of the seated angle. This chair requires Kathy to use her own core muscles to sit up straight. She also was instructed to wheel herself out of the gym under her own power. This was really cool to see.
After OT was nap time for a hour or so, then dinner. Kathy and I ate dinner together then took a walk outside around the Kessler campus. The weather and temperature was gorgeous and it was great to get outside for an extended amount of time. Kathy wrapped up the day with a shower, then to bed around 8:30pm.
Thursday, April 22, 2010
Wednesday, April 21, 2010
Update
Kathy is in very good spirits today. At noon today she had lunch group which allows her to eat lunch with some of the other patients while practicing eating entirely on her own. She aced this and did not need any help to finish her food. This was a major positive reinforcement for the progress she is making. Aditionally, Kathy is now on a normal diet which indicates that she is strong enough to bite, chew, and swallow all normal foods.
Last night Kathy and her parents attended a workshop at Kessler talking about the transition to home and some of the hang ups with handicapped access in homes. Kathy quickly realized that it will not be possible for her to return home with any level of limited mobility. Our little cottage home just will not meet these types of needs. This was a good thing and re-affirmed her commitment to walking out of Kessler.
The next big goal is to get the feeding tube removed. Since she is no longer receiving any food or medicine through the tube it is basically a useless appendage. However, Kathy must maintain a certain level of calorie intake to have it removed. This has become a primary focus, with all meals and even additional calorie shakes to supplement her intake.
This morning (once again) Kathy's sister was nice enough to shave her legs, which is a minor thing but is huge for her comfort level. It is now evening and Kathy is just getting out of the shower. The lift moves her from the shower chair to the bed then relaxation for the rest of the day!
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Last night Kathy and her parents attended a workshop at Kessler talking about the transition to home and some of the hang ups with handicapped access in homes. Kathy quickly realized that it will not be possible for her to return home with any level of limited mobility. Our little cottage home just will not meet these types of needs. This was a good thing and re-affirmed her commitment to walking out of Kessler.
The next big goal is to get the feeding tube removed. Since she is no longer receiving any food or medicine through the tube it is basically a useless appendage. However, Kathy must maintain a certain level of calorie intake to have it removed. This has become a primary focus, with all meals and even additional calorie shakes to supplement her intake.
This morning (once again) Kathy's sister was nice enough to shave her legs, which is a minor thing but is huge for her comfort level. It is now evening and Kathy is just getting out of the shower. The lift moves her from the shower chair to the bed then relaxation for the rest of the day!
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Monday, April 19, 2010
One Tube Out!
As of 6:15pm the tracheostomy tube is out!! The hole should close 50 percent smaller in just 24 hours!
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Sunday, April 18, 2010
Thank You
Kathy asked that I post a BIG thank you to everyone who is sending positive thoughts, cards, and gifts. These things really make her day. Yesterday her McGinn elementary family came to visit and brought a big get well banner signed by the McGinn school students, plus gifts, cards and well wishes from the schools staff. Kathy was all smiles and really liked hearing and seeing the homemade cards that her students put together for her. Teaching is such a big part of Kathy's life and it is now one of her primary motivations to get back to teaching and return to McGinn School as soon as possible.
Kathy's strength is still gradually returning. She was able to roll herself onto her side (in bed) with only minimal help from me. She was also able to hold her mobile phone up to her ear, this might be hard for a conversation longer than 30 seconds or so. Monday, Kathy is bringing her phone to OT and they will work there on dialing, answering and holding the phone. Over this past weekend she was assigned homework to 1. Chew Gum 2. pronounce the work "ing-GA" with conviction 3. use sentences with multiple syllable words, ie "strengthening". All of these things help her to increase strength and stamina.
The only part of Kathy's body that has not completely returned to normal feeling is below the knees. She is able to feel touch sensations just fine, but still has some pins and needles in her feet and shins. Now that she is one week in, we have a better idea of how the Kessler process works. Next week we plan to ask the doctors some questions about the next steps. Kathy wants to know when she can get all the tubes out of her body, ask her doctor about long and short term goals, and understand how they expect her progress to develop over the next few weeks.
Saturday, April 17, 2010
Dinner and a Movie
It is date night tonight. I got permission to prepare Kathy a "soft" home cooked meal. I am on my way up with elbow pasta, sauteed baby spinach with tomato, steamed broccoli / baby carrots on the side and fruit ice pops for desert. After dinner movie on the laptop.
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Thursday, April 15, 2010
Sad Day Today
I arrived to visit around 6:30pm and Kathy was feeling pretty sad. She told me that she had been sad all day and that the reality of what she is dealing with is settling in. She briefly discussed this with her therapist who felt it would be good to discuss this with someone else who has gone through this process. The therapist is going to follow up on this with one of Kessler's previous patients. Also, one of Kathy's good friends has made contact with a person who represents the GBS / CIDP foundation, and he has offered to sit with Kathy to talk about his experience. It is definitely a good time to pursue this.
Other than Kathy's sad day she is still making progress. Yesterday Kathy could bring both her hands to her nose, but needed both hands together mutually supporting each arm. Today she is able to scratch her right eye with her right hand and no support needed from her left hand. She works the iPod fairly easily but can not put in the ear buds in by herself. She held a pen and was able to write "K" in my notepad. Additionally, she was able to sit up under her own power today. Every time I visit Kathy tells me about her progress and I am always very excited to see the gains but also reminded of how devastating this illness has been for her.
Other than Kathy's sad day she is still making progress. Yesterday Kathy could bring both her hands to her nose, but needed both hands together mutually supporting each arm. Today she is able to scratch her right eye with her right hand and no support needed from her left hand. She works the iPod fairly easily but can not put in the ear buds in by herself. She held a pen and was able to write "K" in my notepad. Additionally, she was able to sit up under her own power today. Every time I visit Kathy tells me about her progress and I am always very excited to see the gains but also reminded of how devastating this illness has been for her.
Tuesday, April 13, 2010
First PT / OT Day at Kessler
Kathy's first full day at Kessler really tired her out. I arrived to see her around 5pm and she had already been napping for a full hour. We chatted for a bit and she explained about how busy the day was. Things got going first thing in the morning, around 8am. The morning consisted of breakfast, visit from her doctor, nurses, speech therapist, and psychologist. The process of getting ready to go to the gym and see all of the people who came by took almost two and half hours.
It is great that Kathy can wear her own clothes so the night before we had picked out an outfit for today. I imagine that getting dressed is a bit more laborious now. Once she was dressed there is a harness that helps her from the bed to her wheel chair. Kathy told me that because she has been laying down for so long that her first time in the chair resulted in being very dizzy and light headed. The Kessler therapists use ace wraps to wrap her legs and belly area. These help counter act the light-headedness.
Once strapped into the wheel chair, she is off to PT (this is at 10:30). PT goes for one and half hours and wraps up for the lunch break. I did ask her about some of the exercise that she was doing and she described sitting in the chair, I believe no longer strapped in and working on blowing bubbles. This was to help build back her core strength.
After lunch Kathy was back to the gym for OT where she worked on moving in the bed (practice bed) and brushing her teeth. Kathy was totally blown away by how difficult and tiring a task like brushing her teeth was. She told me that she got back to her room around 4 pm and totally crashed out. Kathy's sister Colleen and her family arrived around 6:00pm to hang out see the new accommodations. I was sent out for Dove soap, Tom's deoderant, and her own towel. Monday, Wednesday and Friday are shower days and Kathy wanted to be prepared with wash supplies that are just like home.
By the time I got back with these things Kathy could barely keep her eyes open. She had a quick phone conversation with her parents said goodbye to her sister and we picked out an outfit for tomorrow. I gave her a kiss and she was out for the count. Since she barely slept over the past week so I hope she sleeps great and straight through to the morning.
It is great that Kathy can wear her own clothes so the night before we had picked out an outfit for today. I imagine that getting dressed is a bit more laborious now. Once she was dressed there is a harness that helps her from the bed to her wheel chair. Kathy told me that because she has been laying down for so long that her first time in the chair resulted in being very dizzy and light headed. The Kessler therapists use ace wraps to wrap her legs and belly area. These help counter act the light-headedness.
Once strapped into the wheel chair, she is off to PT (this is at 10:30). PT goes for one and half hours and wraps up for the lunch break. I did ask her about some of the exercise that she was doing and she described sitting in the chair, I believe no longer strapped in and working on blowing bubbles. This was to help build back her core strength.
After lunch Kathy was back to the gym for OT where she worked on moving in the bed (practice bed) and brushing her teeth. Kathy was totally blown away by how difficult and tiring a task like brushing her teeth was. She told me that she got back to her room around 4 pm and totally crashed out. Kathy's sister Colleen and her family arrived around 6:00pm to hang out see the new accommodations. I was sent out for Dove soap, Tom's deoderant, and her own towel. Monday, Wednesday and Friday are shower days and Kathy wanted to be prepared with wash supplies that are just like home.
By the time I got back with these things Kathy could barely keep her eyes open. She had a quick phone conversation with her parents said goodbye to her sister and we picked out an outfit for tomorrow. I gave her a kiss and she was out for the count. Since she barely slept over the past week so I hope she sleeps great and straight through to the morning.
Monday, April 12, 2010
Monday - Move to Kessler
Kathy finally made it to Kessler around 1:00pm today. She was a bit sad to leave the familiar faces and environment of the CCU but is excited about being out the door and onto the next step. The Ocean Medical Center was great to all of us. They handled the entire acute phase and the immediate needs of Kathy very well, I thank them for their care and compassion.
It is absoutely amazing how quickly things can change with a update to the scenery. When Kathy arrived she was evaluated and admitted by the admissions nurse, who weighed her then immediately took her down for X-Ray, doppler of her legs, and blood work. This took about and hour and half. When we arrived back up at Kathy's room her Physiatrist was there to see her and do a functional analysis of her body. Kathy's doctors are incredible, with the aid of the pulmonologist about four hours after arriving Kathy was off oxygen, had a smaller tracheostomy tube installer, and had the tube capped so that Kathy was speaking and breathing normally. She was able to actually talk on the phone for the first time in weeks and is not getting winded.
Kathy had also been experiencing pain in her abdomen for days. This pain was causing Kath to feel anxious and unsure about what was going on in her abdomen. Since her doctor is so familiar with this phenomena she quickly informed Kathy that this is normal and is actually a sensation rather than a physical issue inside her abdomen. It apparently feels like a band wrapped around her stomach area.
All of these things were causing Kathy higher levels of anxiety both during the day and at night. Not being able to communicate was a huge issue, the band around her abdomen was really scaring her, and her breathing was also still scaring her. Alleviating these issues took all of four hours and the relief on Kathy's face was immediately evident. It was so great to see her comfort go up that much. I think it also really helped her confidence level about the new surroundings and the new people she is working with.
All in all, this was a really great day for Kathy, her family and myself.
It is absoutely amazing how quickly things can change with a update to the scenery. When Kathy arrived she was evaluated and admitted by the admissions nurse, who weighed her then immediately took her down for X-Ray, doppler of her legs, and blood work. This took about and hour and half. When we arrived back up at Kathy's room her Physiatrist was there to see her and do a functional analysis of her body. Kathy's doctors are incredible, with the aid of the pulmonologist about four hours after arriving Kathy was off oxygen, had a smaller tracheostomy tube installer, and had the tube capped so that Kathy was speaking and breathing normally. She was able to actually talk on the phone for the first time in weeks and is not getting winded.
Kathy had also been experiencing pain in her abdomen for days. This pain was causing Kath to feel anxious and unsure about what was going on in her abdomen. Since her doctor is so familiar with this phenomena she quickly informed Kathy that this is normal and is actually a sensation rather than a physical issue inside her abdomen. It apparently feels like a band wrapped around her stomach area.
All of these things were causing Kathy higher levels of anxiety both during the day and at night. Not being able to communicate was a huge issue, the band around her abdomen was really scaring her, and her breathing was also still scaring her. Alleviating these issues took all of four hours and the relief on Kathy's face was immediately evident. It was so great to see her comfort go up that much. I think it also really helped her confidence level about the new surroundings and the new people she is working with.
All in all, this was a really great day for Kathy, her family and myself.
Transport
I am so very happy, and so is Kathy. Transport will be here at 11:30am.
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Saturday, April 10, 2010
Saturday Night Visit & The Mala Beads
The past two nights the nursing staff in the CCU has allowed me to stay until 11:30pm. This extra hour and half with Kathy has been great for both of us. The CCU is very quiet at that hour and we get a bit of time to hang out. Kathy is very excited for the move to Kessler, so excited that she requested that the nurse put her one way speaking valve on and instructed me to take notes. What I got was a list of specific loose fitting yoga pants and matching tops that she can wear in rehab. I am to bring these tomorrow and hold them up for confirmation that they are in fact the ones that she wants to take!
I want to share an interesting story about Mala beads and a Mala bead workshop that was attended by Kathy and a couple of her friends two weeks prior to Kathy's admittance to the hospital. I do not know very much about Mala beads so I had to do some research before posting this. I have learned that Mala beads are a traditional Hindu / Buddhist tool for aiding in keeping count when reciting a mantra. The story of this particular set of Mala beads is directly from Kathy and was shared with me about four weeks ago, so if I make any mistakes I apologize in advance.
The workshop was on a weekend and took place in Westfield, NJ, so Kathy was away for most of the day. Upon returning home Kathy explained the process of the workshop to me. When they arrived they were instructed to pick 108 beads from a large selection of beads. Three of the beads were to be different (like dividers) and one of the beads, the 109th, was a bit larger and would be placed in the center. Since there were different choices in the beads, attendees were encouraged to pick beads that they felt a connection with. Once the beads were selected they were instructed in assembling the Mala beads into a string of beads. The three different beads each had a specific location in the string (I don't remember how this is determined).
Up to this point there were no details shared about the meaning behind the beads that were selected. The meaning would be the last part to the workshop. Kathy explained to me that the three beads that were different from the others represented her Body, Mind, and Spirit. As I understand it, these three beads also have deeper meaning based on which beads were chosen.
This is where the events of the workshop become compelling. The organizer of this particular workshop individually came to each person to help them understand the meaning behind the beads that they had chosen. For Kathy the Spirit bead meant that she has the spirit of someone who cares for others, the Mind bead meant that she will need to learn to let others care for her, and the Body bead meant that she would soon receive a new body. When Kathy shared this with me, we innocently thought that it meant something totally different. I soon forgot about this and was reminded by Kathy very early in the morning, Sunday March 28th. At the time we were both a little freaked out about this. However, since that time this particular set of beads has never left Kathy's side.
I was reminded of this tonight when I visited with her and saw the beads sitting on the table next to her bed. Whether or not these beads were meant to be used in reciting mantras is debatable. However, the connectedness of all things we see, touch, think and feel is not debatable. Somewhere in this there is a deeper meaning that we have yet to discover.
I want to share an interesting story about Mala beads and a Mala bead workshop that was attended by Kathy and a couple of her friends two weeks prior to Kathy's admittance to the hospital. I do not know very much about Mala beads so I had to do some research before posting this. I have learned that Mala beads are a traditional Hindu / Buddhist tool for aiding in keeping count when reciting a mantra. The story of this particular set of Mala beads is directly from Kathy and was shared with me about four weeks ago, so if I make any mistakes I apologize in advance.
The workshop was on a weekend and took place in Westfield, NJ, so Kathy was away for most of the day. Upon returning home Kathy explained the process of the workshop to me. When they arrived they were instructed to pick 108 beads from a large selection of beads. Three of the beads were to be different (like dividers) and one of the beads, the 109th, was a bit larger and would be placed in the center. Since there were different choices in the beads, attendees were encouraged to pick beads that they felt a connection with. Once the beads were selected they were instructed in assembling the Mala beads into a string of beads. The three different beads each had a specific location in the string (I don't remember how this is determined).
Up to this point there were no details shared about the meaning behind the beads that were selected. The meaning would be the last part to the workshop. Kathy explained to me that the three beads that were different from the others represented her Body, Mind, and Spirit. As I understand it, these three beads also have deeper meaning based on which beads were chosen.
This is where the events of the workshop become compelling. The organizer of this particular workshop individually came to each person to help them understand the meaning behind the beads that they had chosen. For Kathy the Spirit bead meant that she has the spirit of someone who cares for others, the Mind bead meant that she will need to learn to let others care for her, and the Body bead meant that she would soon receive a new body. When Kathy shared this with me, we innocently thought that it meant something totally different. I soon forgot about this and was reminded by Kathy very early in the morning, Sunday March 28th. At the time we were both a little freaked out about this. However, since that time this particular set of beads has never left Kathy's side.
I was reminded of this tonight when I visited with her and saw the beads sitting on the table next to her bed. Whether or not these beads were meant to be used in reciting mantras is debatable. However, the connectedness of all things we see, touch, think and feel is not debatable. Somewhere in this there is a deeper meaning that we have yet to discover.
Saturday Night Request - 1 of 2
I have a special request from a close friend that I am happy to post here.
Tomorrow at 12:00 noon, two minutes of healing energy and positive thoughts for Kathy's recovery. Since I believe in the connectedness of all things the idea of many minds creating and moving positive energies is great!!
Tomorrow at 12:00 noon, two minutes of healing energy and positive thoughts for Kathy's recovery. Since I believe in the connectedness of all things the idea of many minds creating and moving positive energies is great!!
Finally Sleeping
Kath has had a very tough time sleeping. She is finally asleep in the middle of the day, which means that she will probably be up in the night! Either way sleep is good and it heals the body.
Earlier today I spoke with her for 5 minutes using the one way valve. Kinda of nice to have a real conversation. She is getting much better at this but still tires her out fast.
Also, Kathy passed the swallow test and is on the puree solid foods for lunch and dinner today. Menu: puree cottage cheese with puree fruit, puree applesauce, puree peaches, pudding and thickened juice. Thin liquids are not allowed, so things like water or ginger ale are not acceptable yet.
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Earlier today I spoke with her for 5 minutes using the one way valve. Kinda of nice to have a real conversation. She is getting much better at this but still tires her out fast.
Also, Kathy passed the swallow test and is on the puree solid foods for lunch and dinner today. Menu: puree cottage cheese with puree fruit, puree applesauce, puree peaches, pudding and thickened juice. Thin liquids are not allowed, so things like water or ginger ale are not acceptable yet.
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Friday Night - Thank You
Friday was a really good day. Kathy was a bit down in the morning but by the end of the day was in really good spirits. Earlier in the day she had spent about 9 minutes using the one way valve that allows her to talk. I missed this, but hope to be there today when she does it again. It will be nice to have a real conversation with her.
I want to thank everyone who came last night to support Kathy. When she asked me who was there and I told her, she began to cry (in a good way) and immediately felt that she really wanted to see everyone. The funny part of this is that everyone had already left before I had a chance to tell Kathy who was there, so Ditty took off in a mad dash to catch them and bring everyone back in.
Up to last night Kathy was unsure she was ready for a visit like this. Ultimately, the visit meant alot to her, and she was really happy to see people from outside of the hospital. I feel that everyday there is a new page turned in Kathy's recovery and yesterday was a big one. The feeling that I got was that Kathy is now truly past the illness and has embraced her recovery.
I want to thank everyone who came last night to support Kathy. When she asked me who was there and I told her, she began to cry (in a good way) and immediately felt that she really wanted to see everyone. The funny part of this is that everyone had already left before I had a chance to tell Kathy who was there, so Ditty took off in a mad dash to catch them and bring everyone back in.
Up to last night Kathy was unsure she was ready for a visit like this. Ultimately, the visit meant alot to her, and she was really happy to see people from outside of the hospital. I feel that everyday there is a new page turned in Kathy's recovery and yesterday was a big one. The feeling that I got was that Kathy is now truly past the illness and has embraced her recovery.
Friday, April 9, 2010
AAN Offers New Guidelines for Treatment of Guillain-Barre Syndrome
Sept. 22, 2003 -- The American Academy of Neurology (AAN) presents new guidelines for the treatment of Guillain-Barré syndrome (GBS) in the Sept. 23 issue of Neurology. These guidelines emphasize early treatment with either intravenous immunoglobulin (IVIg) or plasma exchange, but they note that these two treatments should not be combined.
"People who are severely affected should be treated early with either IVIg or plasma exchange," lead author Richard Hughes, MD, from Guy's, King's and St. Thomas' School of Medicine in London, England, says in a news release. "Neurologists and their patients should consider that IVIg has somewhat fewer side effects and is more convenient."
A review of published evidence suggests that treating GBS within two to four weeks after symptom onset may decrease recovery time. Plasma exchange and IVIg are equally effective if given early to adults with severe GBS, and they could also be considered in children with severe GBS.
However, there is no additional benefit from combining IVIg and plasma exchange, or from administering them sequentially. Corticosteroids were not shown to be effective and were therefore not recommended. Although data on combination therapies, using steroids combined with IVIg or two courses of IVIg or plasma exchange, are not currently available, this approach may be promising.
"The bottom line here is that IVIg, or immunoglobulin infusion, is the preferred treatment for Guillain-Barré, depending on availability," says second author Eelco Wijdicks, MD, from the Mayo Clinic in Rochester, Minnesota, while noting that shortages of gamma globulin may compromise this approach.
"There is no question that plasma exchange could have more complications. Hypotension...is possible. Catheter placement in large veins has a tendency to cause more complications," he says, adding that plasma exchange also requires a specialized, experienced treatment team. "IVIg is easier to use and there are fewer complications. With evidence of comparable effect, it should be the treatment of choice."
Neurology. 2003;61:736-740
Reviewed by Gary D. Vogin, MD
Holding Pattern
Kathy has recovered sufficiently enough that the doctors no longer feel that she requires critical care. It was suggested this morning that Kathy move to another part of the hospital prior to her departure for Kessler early next week. We were not pleased with this and lobbied to prevent it from happening. The nurses agreed and lobbied on Kathy's behalf as well. Kathy will stay in CCU, where the care is excellent at one nurse for every two patients and the space and faces are familiar. I thanked Kathy's doctor for making the decision to allow her to stay until next week. Ultimately, Kathy is in a bit of a holding pattern until monday. She is recovered enough to go to rehab, but will need to wait for monday to do the transport. PT will work with her again tomorrow and Sunday is a waiting day.
Kathy spent about three hours in the chair again today and by the end of this was exhausted and ready to sleep. Since she did not sleep at all last night I was very happy to hear that she wanted to close her eyes for a bit. But there was no luck for the weary and as soon as she moved to the bed the PT team was there for a work out. Supported leg lifts for the quads, supported hamstring curls and flexibility work for the legs. The last exercise was an extremely modified and assisted sit up. From the look on Kathy's face this was painful.
Before the snooze, I was able to read Kathy about twenty cards that had arrived to the house over the past few days. She was VERY happy to hear them, and we both appreciate immensely the support we have received from friends and family.
Thursday, April 8, 2010
Good Momentum Forward
I left Kathy today in the chair and out of the bed. The chair is like a big lazy boy but with a decidedly medical look to it. Just before I left the respiratory people were there to do a vital capacity test. This shows how much lung capacity Kathy has. She scored a 1.5 on this. For comparison sake, I was told that someone built like me and in decent condition should score a 4.0. The 1.5 that Kathy scored is much better than the last number she score before going on the ventilator. Also, the ventilator was rolled out of the room today and that was a really good feeling.
After the respiratory therapist came the speech therapist came back and did a swallow test. This also went well, but there was some concern about this since Kathy has a bad cough from the pneumonia. There was some confusion as to whether the cough was just from pneumonia or the swallowing contributed. For now there will be no solid foods or drinks. This should change tomorrow. I know Kathy was dissappointed about this since she asked for a warm tea or ginger ale. Instead of tea or ginger ale the ice chips were a huge thing all day long.
At 1:00 pm Colleen (Kathy's sister) and I traveled to West Orange to tour the Kessler Rehab Hospital. This was the second facility I have toured in the past week. The first facility was good, but seemed much more geared toward the rehab of broken hibs and mobility type problems. I did not feel that they were truly equipped for the challenge of returning someone like Kathy to her previous physical capabilities. I learned that Kessler has been exclusively rehabing spinal injuries for a very long time and GBS is one of their specialities. I had discussed Kessler with Kathy a couple times over the past few days and she was very receptive to the idea. I have also received many very thoughtful emails prompting me to make absolutely certain that Kathy is getting the best care, best rehab, and that we are both 100% comfortable with the facility that we choose. This has been weighing on me very heavily for the past week.
During our visit to Kessler, it did not take long for me to realize that this is where Kathy needs to go next. The patient population is young, there is another GBS patient currently being admitted for treatment there and all of Kathy's rehab needs are met by a team that resides directly on her floor. She will have access to the entire team at almost any time she needs them. The team consists of a case manager, RN, PT, OT, Speech therapist, Psychology, Neurology, and her Physiatrist. The entire facility is well lit, clean and everyone (patients and staff) were moving with purpose (I like movement with purpose). Choosing Kessler became an easy decision and ultimately Kathy will be transported to this new facility either monday or tuesday of next week. Until then she will remain in Ocean Medical's CCU. Once at Kessler weekly goals will be set primarily by her therapy team and then re-evaluated and adjusted every week. Weekly goals are driven by the primary goal of leaving the facility as quickly as possible with the ability to resume a normal active life.
Seeing the facility helped put Kathy's illness into perspective for me. As of today Kathy is partially paralyzed. However, she is regaining strength and will continue to do so until she is fully recovered. I have the utmost confidence in her focus and motivation to do this. Reality is that she will need to take small steps to get there and getting there will likely take a long time. Kathy will need every tool possible to make that process smoother and faster. I am looking forward to supporting my partner through this next phase.
After the respiratory therapist came the speech therapist came back and did a swallow test. This also went well, but there was some concern about this since Kathy has a bad cough from the pneumonia. There was some confusion as to whether the cough was just from pneumonia or the swallowing contributed. For now there will be no solid foods or drinks. This should change tomorrow. I know Kathy was dissappointed about this since she asked for a warm tea or ginger ale. Instead of tea or ginger ale the ice chips were a huge thing all day long.
At 1:00 pm Colleen (Kathy's sister) and I traveled to West Orange to tour the Kessler Rehab Hospital. This was the second facility I have toured in the past week. The first facility was good, but seemed much more geared toward the rehab of broken hibs and mobility type problems. I did not feel that they were truly equipped for the challenge of returning someone like Kathy to her previous physical capabilities. I learned that Kessler has been exclusively rehabing spinal injuries for a very long time and GBS is one of their specialities. I had discussed Kessler with Kathy a couple times over the past few days and she was very receptive to the idea. I have also received many very thoughtful emails prompting me to make absolutely certain that Kathy is getting the best care, best rehab, and that we are both 100% comfortable with the facility that we choose. This has been weighing on me very heavily for the past week.
During our visit to Kessler, it did not take long for me to realize that this is where Kathy needs to go next. The patient population is young, there is another GBS patient currently being admitted for treatment there and all of Kathy's rehab needs are met by a team that resides directly on her floor. She will have access to the entire team at almost any time she needs them. The team consists of a case manager, RN, PT, OT, Speech therapist, Psychology, Neurology, and her Physiatrist. The entire facility is well lit, clean and everyone (patients and staff) were moving with purpose (I like movement with purpose). Choosing Kessler became an easy decision and ultimately Kathy will be transported to this new facility either monday or tuesday of next week. Until then she will remain in Ocean Medical's CCU. Once at Kessler weekly goals will be set primarily by her therapy team and then re-evaluated and adjusted every week. Weekly goals are driven by the primary goal of leaving the facility as quickly as possible with the ability to resume a normal active life.
Seeing the facility helped put Kathy's illness into perspective for me. As of today Kathy is partially paralyzed. However, she is regaining strength and will continue to do so until she is fully recovered. I have the utmost confidence in her focus and motivation to do this. Reality is that she will need to take small steps to get there and getting there will likely take a long time. Kathy will need every tool possible to make that process smoother and faster. I am looking forward to supporting my partner through this next phase.
Forward Progress
This morning I discovered that Kathy never needed to go back on the ventilator, so it seems that we are past that now. She is still on oxygen but I suspect that will go away soon as well. There were a couple new firsts in her recovery today. I heard her voice for the first time since she went on the vent and she was able to eat and swallow ice chips.
The speech therapist was in around 9:30am and put a one way valve on Kathy's tracheostomy tube. This forced her to breath in through the tube but exhale past her vocal cords and through her mouth. It made her breathing more difficult so she will need to work up to longer periods with it on - Kathy started with two minutes. When it was on she said her name and counted to five. Later today the speech therapist will be back to put the valve on and do some testing on her ability to swallow.
Right now Kathy is getting ready to move from the bed back to the chair.
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The speech therapist was in around 9:30am and put a one way valve on Kathy's tracheostomy tube. This forced her to breath in through the tube but exhale past her vocal cords and through her mouth. It made her breathing more difficult so she will need to work up to longer periods with it on - Kathy started with two minutes. When it was on she said her name and counted to five. Later today the speech therapist will be back to put the valve on and do some testing on her ability to swallow.
Right now Kathy is getting ready to move from the bed back to the chair.
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Wednesday, April 7, 2010
Out of the bed today
Kathy spent a good portion of the day in a special chair that allowed her to sit up an get out of the bed. I did not see this but her mom told me that she did an excellent job remaining centered on the chair and did not slump her head or shoulders either direction. In addition to being out of the bed she was also taken off the ventilator around 10am and is still off right now. In lieu of the ventilator there are regular breathing treatments and O2 delivered to the trach tube. Vitals are still good but heart rate remains a bit high. Strength in her body continues to return but at about the same rate as the past two days, which is very slow.
Being in the chair most of the day really tired Kathy out, the only words I got from her at 4pm were "my ass hurts" (from sitting in the chair).
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Being in the chair most of the day really tired Kathy out, the only words I got from her at 4pm were "my ass hurts" (from sitting in the chair).
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Tuesday, April 6, 2010
Tuesday Summary
Tuesday wrapped up as a great day with huge progress. The nurses and doctors again feel that Kathy is progressing very rapidly back towards good health. They do still affirm that this will be a long road to full recovery.
It turns out that Kathy was actually off the ventilator from 9:30am through 2:00pm. Around 2:00pm she got fatigued and started to have some problems breathing on her own and did go back on the vent for the rest of the evening. The ventilator is set to what the doctors called a "wean" setting. It helps her but she is still doing some of the work on her own.
Her doctors and nurses were impressed with her time off the ventilator, they did not think that she would go that long. Later in the day Kathy's nurse (Mary), who was all smiles today, told me that she wasn't sure that Kathy would do well off the vent, but was pleasantly surprised at her strength. Hearing all of this positive energy was very reassuring. At both my 4:00pm visit and my 9:00pm visit Kathy was sleeping, which is to be expected after today. I have read that fatigue is something that can follow GBS patients for a long time, even after a full recovery. After all the work she did today using her respiratory muscles I can understand the need to sleep.
Kathy's anxiety is still high at times. Part of this seems to be that the vent weaning process includes moving away from the sedatives. The nurses are doing their best to keep her as calm and relaxed as possible to prevent the need to go back to higher sedative levels.
That is it for today, positive thoughts about more good things for tomorrow :)
It turns out that Kathy was actually off the ventilator from 9:30am through 2:00pm. Around 2:00pm she got fatigued and started to have some problems breathing on her own and did go back on the vent for the rest of the evening. The ventilator is set to what the doctors called a "wean" setting. It helps her but she is still doing some of the work on her own.
Her doctors and nurses were impressed with her time off the ventilator, they did not think that she would go that long. Later in the day Kathy's nurse (Mary), who was all smiles today, told me that she wasn't sure that Kathy would do well off the vent, but was pleasantly surprised at her strength. Hearing all of this positive energy was very reassuring. At both my 4:00pm visit and my 9:00pm visit Kathy was sleeping, which is to be expected after today. I have read that fatigue is something that can follow GBS patients for a long time, even after a full recovery. After all the work she did today using her respiratory muscles I can understand the need to sleep.
Kathy's anxiety is still high at times. Part of this seems to be that the vent weaning process includes moving away from the sedatives. The nurses are doing their best to keep her as calm and relaxed as possible to prevent the need to go back to higher sedative levels.
That is it for today, positive thoughts about more good things for tomorrow :)
Mid Day Update
The doctors took Kathy off the ventilator. She has been off for about 2 hours now. She will stay off until she gets tired, then maybe back on, but maybe not!. We will see how it goes.
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Tuesday Morning - Good Start
Kathy had a rough night and could not get comfortable. If you know Kathy then you know that this is actually somewhat normal. Additionally, Her nurse looked a bit frazzled when I came in. Kathy was happy to see me and she guided me through a yoga / stretching session for her legs and arms. Once that was done it was massage time. Later today Kath will get a Reiki massage and she is excited about this.
Her intensivist and neurologist were both in. Gilson (Neurologist) is still impressed. She has better strength in her upper body and her eyes are wide open and almost look like normal. The intensivist lowered her O2 to 40 percent and plans to take her off the vent today for about 2 hrs, if her oxygen saturation stays okay at 40 percent. These are all great indicators. We will know more this afternoon.
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Her intensivist and neurologist were both in. Gilson (Neurologist) is still impressed. She has better strength in her upper body and her eyes are wide open and almost look like normal. The intensivist lowered her O2 to 40 percent and plans to take her off the vent today for about 2 hrs, if her oxygen saturation stays okay at 40 percent. These are all great indicators. We will know more this afternoon.
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Monday, April 5, 2010
Monday 4/5
The day started well for Kathy, although her night time nurse said that she was awake most of the night and could not get comfortable. Because of being up most of the night Kathy's HR and BP were up a bit higher than yesterday, but for a portion of the night had dropped below 100 with stable BP. As soon as I got into the room Kathy asked me to pick her up and give her a hug (that felt good). Sometime in the night Kathy asked for the nurse to call her mom with a request for shampoo, deoderant and a razor to shave her legs. Later on in the day it would be a mini spa day.
Kathy's neurologist arrived around 7:30am and was duly impressed with her progress, he asked twice "has it been nine days, is that right?". There was additional strength in her hands this morning, not alot but enough to be noticeable. Soon after that the Critical Care Unit doctor, who is responsible for weaning her off the ventilator, arrived to do some testing of respiratory function and subsequently lowered her O2 level to 50%. Kathy has maintained good oxygen saturation all day with the new level. The last doctor to come in was the infectious disease doctor who is treating Kathy's minor case of pneumonia. He plans to leave her on antibiotics for four more days. Her white blood cell count is still normal and chest x-ray is almost totally clean.
Steps for the next few days are for the doctors to aggressively wean Kathy off of the ventilator. Once she is off the ventilator they will let her rest for a day before doing a PT/OT eval. This evaluation will help determine how much and what type of rehab she will need. I had a long discussion with Kathy's case manager today regarding this next step and what Kathy's options will be. I learned through this conversation that all decisions about what happens next depend solely on Kathy's stability, how quickly she is able to come off the ventilator, and her functionality once she does. Her family and I are pro-actively seeking out the best rehab facilities and attempting to be prepared for where Kathy will go next but nothing can be decided now.
Towards the late afternoon Kathy was a bit more uncomfortable than earlier in the day. Lots of pain all over her body and pressure in the belly area. Her emotional state was beginning to decline a bit. I think her lower sedative level leaves her more awake and aware and constant contact with her family reduces her stress but also keeps her awake. There are visiting hours for the CCU and this causes a bit of anxiety for both Kathy and everyone who is here and wants to be with her 24/7. It is VERY hard to leave when those times are up. Her anxiety level was peaking towards the end of the day, prompting us to move to the waiting area until the nurses could get her anxiety back down and attempt to have her rest.
One week ago, Kathy's neurologist told me "it is going to be good for a while, then it will feel like someone punched you in the stomach". Leaving her in the room is like being punched in the stomach.
Kathy's neurologist arrived around 7:30am and was duly impressed with her progress, he asked twice "has it been nine days, is that right?". There was additional strength in her hands this morning, not alot but enough to be noticeable. Soon after that the Critical Care Unit doctor, who is responsible for weaning her off the ventilator, arrived to do some testing of respiratory function and subsequently lowered her O2 level to 50%. Kathy has maintained good oxygen saturation all day with the new level. The last doctor to come in was the infectious disease doctor who is treating Kathy's minor case of pneumonia. He plans to leave her on antibiotics for four more days. Her white blood cell count is still normal and chest x-ray is almost totally clean.
Steps for the next few days are for the doctors to aggressively wean Kathy off of the ventilator. Once she is off the ventilator they will let her rest for a day before doing a PT/OT eval. This evaluation will help determine how much and what type of rehab she will need. I had a long discussion with Kathy's case manager today regarding this next step and what Kathy's options will be. I learned through this conversation that all decisions about what happens next depend solely on Kathy's stability, how quickly she is able to come off the ventilator, and her functionality once she does. Her family and I are pro-actively seeking out the best rehab facilities and attempting to be prepared for where Kathy will go next but nothing can be decided now.
Towards the late afternoon Kathy was a bit more uncomfortable than earlier in the day. Lots of pain all over her body and pressure in the belly area. Her emotional state was beginning to decline a bit. I think her lower sedative level leaves her more awake and aware and constant contact with her family reduces her stress but also keeps her awake. There are visiting hours for the CCU and this causes a bit of anxiety for both Kathy and everyone who is here and wants to be with her 24/7. It is VERY hard to leave when those times are up. Her anxiety level was peaking towards the end of the day, prompting us to move to the waiting area until the nurses could get her anxiety back down and attempt to have her rest.
One week ago, Kathy's neurologist told me "it is going to be good for a while, then it will feel like someone punched you in the stomach". Leaving her in the room is like being punched in the stomach.
Sunday, April 4, 2010
Todays 4:00 pm visit
By far Kathys best day since this all began. Her vitals are excellent and she is on a new sedative that leaves her body fast once it is turned off. No longer needs the nitro drip and digoxin course is complete. Her entire family was there at 4:00 and we were able to communicate with yes, no and some lip reading. She asked to listen to MC Yogi, requested a foot rub and a neck rub. Strength is coming back into her body and she was happy to show off how easily she can point her toes. Kathy's arms and shoulders are about the same as yesterday but she can lightly squeeze her fingers. Heart rate was below 100 for the first time in a week an her blood pressure is perfect. Can't wait to see what her neurologist thinks tomorrow morning!
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Guillain Barre in the news
Kathy's sister Colleen found this on You Tube. It is scary and comforting at the same time
http://www.youtube.com/watch?v=opA_X34IoWk
http://www.youtube.com/watch?v=opA_X34IoWk
Saturday, April 3, 2010
Tonights 9pm Visit
Kathy came awake from sedation around 9:30 pm tonight. She was uncomfortable and warm. She was moving both shoulders and arms, not a lot but better than yesterday. She moves her head with enough force to throw the damp cloth that was on her forehead off onto the bed. Communicating is difficult but she lipped that she would like a bath. Waking up seems to be very tough on her I can only imagine that the reality of what is afflicting her body is unbelievably scary for her. This was a good night for me since it was the first time I have been able to communicate with her. I don't know if she will remember but I believe she is making progress.
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First blog for Kathy March
It took a bit of time before I could make this blog thing happen. Hopefully this will be a good way to update everyone on Kathy's condition. To get everyone up to speed this will be a fairly long post; Friday morning March 26, 2010 Kathy woke up with pins and needles feeling in her toes. We brushed this off as an odd occurrence and both went to work. Of course this odd occurrence began to progress and eventually pins and needles in the toes led to pins and needles in the fingers and an odd blistering on Kathy's knuckles accompanied by blotchy skin on her legs. Her school nurse gave her an antihistamine and the blotchy blistery problem seemed to go away. We had ate out the night before and Kathy assumed some type of food poisoning. She immediately called me and told me not to eat the Pad Thai leftovers that she had packed in my lunch (yes, she packs my lunch).
By this time I am certain that Kathy's stress level was sky high, this is based on the fact that I found extensive hour by hour notes on what she was experiencing that friday. When I finally saw Kathy on friday evening she had just returned from the hospital with her mom. The hospital sent her home because the symptoms where odd and not that apparent yet. She was instructed to return immediately if the symptoms got worse. By 9:00 pm there was an obvious hitch in her gate and the pins and needles were still there.
By 6:00am on Saturday March 27 the syndrome had progressed substantially. Kathy awoke unable to functionally walk on her own and suffering from double vision. She was absolutely certain it was time to return to the hospital. We both knew that something was very wrong. Kathy was admitted to the hospital and in her room by noon time. Nothing made any sense and everything continued to get worse. Her heart rate was elevated, she was spiking a fever, gross motor control continued to decline to the point where I was required to roll her onto her side so she could be comfortable. By 2:00am Sunday morning Kathy told me she was no longer able to lift her head off the pillow and the really scary part was her slow loss of respiratory function. The nurses assigned to Kathy's care were very worried and immediately contacted both Kathy's neurologist, and the intensivist on duty that evening. All agreed that she needed to be immediately moved to the Critical Care Unit and within a half hour we were on the other side of the hospital.
This new location was like the Hilton compared to the room that we were just in. However, the events that followed the move and subsequently closed out the remainder of the weekend were the most frightening of my life. Kathy's motor control continued to decline, fever was worse, and her heart rate continued to be elevated. Once we had moved to the CCU the respiratory therapist was in the room every couple of hours to test Kathy's breathing. This was consistent and strong for quite a long time. Sunday brought a brain MRI and more of the same symptoms. Sunday night was the worst yet with absolutely no relief for the pain Kathy was experiencing. A drug called Adavan was administered to help Kathy sleep and hopefully reduce her extremely elevated heart rate. At this time her heart rate was consistently 150 bpm. The Adavan did absolutely nothing other than freak her out even more and elevate her heart rate. Most of the remainder of Sunday evening and Monday morning are a blur, there was a spinal tap, thoracic and lumbar MRI, more worrying and crying. The doctors confirmed the GBS diagnosis via elevated proteins in the CSF. They immediately performed the first IV IG treatment. Kathy called this the
"magic pill" and immediately had a positive response leading us to believe that this was on its way to being over. However, just as soon as she was feeling a bit better she sustained a massive drop in respiratory function. Based on this, the doctors recommended that Kathy be proactively intubated before she had a respiratory emergency. I discussed this with Kathy and then consented with the doctors. This was the last time I spoke with my wife.
The remainder of this week has been ups and downs with IV IG treatments, fever, pneumonia, tracheostomy, elevated blood pressure, pain, morphine drip, reduced oxygen saturation, feeding line, Digoxin for HR, and the latest is a Nitro drip. As of today Kathy is stable, her heart rate is down from where it was and she is moving her shoulders, head and neck. She has a special bed to prevent bed sores and a vibrating vest to help move mucus and fluids out of her lungs. The GBS appears to have peaked and now the doctors and nurses need to sustain and care for all of her body's systems. The rest is a waiting game that could take weeks. The syndrome usually starts in your feet and moves its way up your legs to your arms, chest and eventually the head. Interestingly, it is supposed to leave the same way.
Interesting and helpful websites that have provided crash course reading and information for me over the last week:
GBS / CIDP Foundation International - www.gbs-cidp.org
Mayo Clinic - http://www.mayoclinic.com/health/guillain-barre-syndrome/DS00413
If you are really interested pickup the book "No Laughing Matter" by Joseph Heller & Speed Vogel. I have just started it on the recommendation of Kathy's neurologist.
By this time I am certain that Kathy's stress level was sky high, this is based on the fact that I found extensive hour by hour notes on what she was experiencing that friday. When I finally saw Kathy on friday evening she had just returned from the hospital with her mom. The hospital sent her home because the symptoms where odd and not that apparent yet. She was instructed to return immediately if the symptoms got worse. By 9:00 pm there was an obvious hitch in her gate and the pins and needles were still there.
By 6:00am on Saturday March 27 the syndrome had progressed substantially. Kathy awoke unable to functionally walk on her own and suffering from double vision. She was absolutely certain it was time to return to the hospital. We both knew that something was very wrong. Kathy was admitted to the hospital and in her room by noon time. Nothing made any sense and everything continued to get worse. Her heart rate was elevated, she was spiking a fever, gross motor control continued to decline to the point where I was required to roll her onto her side so she could be comfortable. By 2:00am Sunday morning Kathy told me she was no longer able to lift her head off the pillow and the really scary part was her slow loss of respiratory function. The nurses assigned to Kathy's care were very worried and immediately contacted both Kathy's neurologist, and the intensivist on duty that evening. All agreed that she needed to be immediately moved to the Critical Care Unit and within a half hour we were on the other side of the hospital.
This new location was like the Hilton compared to the room that we were just in. However, the events that followed the move and subsequently closed out the remainder of the weekend were the most frightening of my life. Kathy's motor control continued to decline, fever was worse, and her heart rate continued to be elevated. Once we had moved to the CCU the respiratory therapist was in the room every couple of hours to test Kathy's breathing. This was consistent and strong for quite a long time. Sunday brought a brain MRI and more of the same symptoms. Sunday night was the worst yet with absolutely no relief for the pain Kathy was experiencing. A drug called Adavan was administered to help Kathy sleep and hopefully reduce her extremely elevated heart rate. At this time her heart rate was consistently 150 bpm. The Adavan did absolutely nothing other than freak her out even more and elevate her heart rate. Most of the remainder of Sunday evening and Monday morning are a blur, there was a spinal tap, thoracic and lumbar MRI, more worrying and crying. The doctors confirmed the GBS diagnosis via elevated proteins in the CSF. They immediately performed the first IV IG treatment. Kathy called this the
"magic pill" and immediately had a positive response leading us to believe that this was on its way to being over. However, just as soon as she was feeling a bit better she sustained a massive drop in respiratory function. Based on this, the doctors recommended that Kathy be proactively intubated before she had a respiratory emergency. I discussed this with Kathy and then consented with the doctors. This was the last time I spoke with my wife.
The remainder of this week has been ups and downs with IV IG treatments, fever, pneumonia, tracheostomy, elevated blood pressure, pain, morphine drip, reduced oxygen saturation, feeding line, Digoxin for HR, and the latest is a Nitro drip. As of today Kathy is stable, her heart rate is down from where it was and she is moving her shoulders, head and neck. She has a special bed to prevent bed sores and a vibrating vest to help move mucus and fluids out of her lungs. The GBS appears to have peaked and now the doctors and nurses need to sustain and care for all of her body's systems. The rest is a waiting game that could take weeks. The syndrome usually starts in your feet and moves its way up your legs to your arms, chest and eventually the head. Interestingly, it is supposed to leave the same way.
Interesting and helpful websites that have provided crash course reading and information for me over the last week:
GBS / CIDP Foundation International - www.gbs-cidp.org
Mayo Clinic - http://www.mayoclinic.com/health/guillain-barre-syndrome/DS00413
If you are really interested pickup the book "No Laughing Matter" by Joseph Heller & Speed Vogel. I have just started it on the recommendation of Kathy's neurologist.
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