Pigeon Pose

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Back to School

It is back to school season for everyone, including Kathy. Her first day even reminded me of when my parents saw me off to the first day of school. I stood in the driveway as she drove away, returning to one of her favorite places. (Kathy teaches Health and Physical Education for K-4 students)

For months Kathy's goal has been to go back to teaching this September. Her doctor's and therapists were very non committal about this goal, almost as if they did not believe that she would make it. Of course, she made it and has already comfortably completed her first classes of the year. In turn her therapists are impressed by her determination and how far she has come in the past months. There is still much improvement for Kathy to make and she will be continuing therapy in West Orange three days a week after school.

The return to teaching was a positive and emotional event for Kathy. She had the first opportunity to see kids, parents, other teachers and friends that she had missed since March 27th. This seemed to open up some feelings and emotions that she was not necessarily prepared for but were all positive. Ultimately, Kathy was warmly welcomed back with open arms by the entire SPF school district and McGinn School and is excited for the 2010 - 2011 school year.

New Developments

Strength gains for Kathy are continuing on a weekly if not daily basis. The coolest thing that I have seen in the past week is downward dog, upward dog, childs pose, and some cat cows from table pose. It was very exciting to see Kathy begin to do some of things that brought her tremendous joy prior to GBS.

In addition to these new physical developments Kathy has also continued to develop her independence. Yesterday was Kathy's first fully independent trip outside the house, driving the car and getting into her sister's hair salon for a color and trim. Additionally, today Kathy did some grocery shopping and ran a couple of errands!!

She is still planning on returning to teaching in the fall and is very comfortable that she will be ready to do so.

First trip behind the wheel!!

This was a big one!! Look out for a Blue Jeep Cherokee!

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Friday Pizza Night

Home made pizza courtesy of Kathy. It is great having a wife who loves to cook, and can!!
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Off the walker and on to the Cane!

It is official - as of today Kathy is off the walker and onto the cane only! She got this news today from her PT therapist at Kessler. Progress continues for Kathy everyday. It seems as if it is exponential and progress compounds on progress. We have been really happy about this for the past 3-4 weeks. The next major milestone will be driving the car. This should help her regain a large part of the independence that she has lost. Right now the steering wheel is no problem as the strength and dexterity in Kathy's upper body is very good. Her legs are still lagging behind a bit and she is not able to move from gas pedal to brake (important item!).

Kathy wanted to try the bike on the trainer

She looks good on the bike!!

Kathy pre DMB show

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Update

Kathy's progress is still very consistent. She is making gains in strength and coordination every day. The progress remains very slow in relation to where Kathy would like to be. However, her ability to function on her own inside the home is now almost fully intact. When Kathy initially returned home she needed support with every aspect of life including simply getting out of bed. All of this is now done completely on her own. Out of bed, shower, eating, preparing meals, dressing, shoes and socks etc. Kathy even made me a chicken and asparagus dinner yesterday night. The walker is no longer necessary for moving around the house and in most cases only comes with us in the car. Any walking that Kathy does is still short distances and we typically still use the wheelchair for any extended distances or days away from the house.

Yesterday was a follow up visit to Kathy's inpatient doctor at Kessler. We found this to be a bit underwhelming of a visit. Her doctor felt that she was still making progress and was able to physically measure and show us that progress. However she made a comment that some GBS patients do not always get back 100% of what they lose. This was the first time that we heard this from her (although we have read it in other patients accounts). I think that both Kathy and I understand the reality of what types of deficits GBS could leave a person with. Although, any energy focused in that direction is not positive energy almost as if those types of thoughts are self fulfilling prophecies. I feel as if Kathy is an athlete training for a specific goal, a goal that she will achieve. Right now that goal is resuming normal day to day activities (she is almost there), later in the summer that goal will be resuming a normal work week and returning to teaching. I look forward to supporting her in this and know that she will do what she sets her mind to.

Out and about for some Groceries

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New Walker

Here is a picture of the newest weapon in Kathy's walking arsenal. Thank You to Kathy's mom for bringing this over yesterday. The best thing about the new walker is that Kathy can now easily walk laps around the neighborhood! Right now the laps are short Dudley to Trenton, Trenton to Phillips and back home. The plan is to do these two - three times per day until Kathy is totally comfortable at that distance then increase the distance bit by bit. The new walker also allows Kathy to get in and out of the front door totally under her own power, then easily up and down the ramp in the front of the house.

June 9 - Update

It has been a while since the last update and fortunately in that time Kathy has continued to make great progress. She is now walking from the car into the house (with help) and vice versa. Today Kathy did the steps in the back of the house instead of the ramp in the front. Hopefully within the next couple of weeks Kathy will migrate from the wheelchair, as the primary long distance tool, to a walker with a seat. This will allow her to walk but stop and take breaks when she needs them. Kathy is also now off of "contact guard" allowing her to move around the house on her own. Her stability and gate when using the walker looks very good, almost normal. As the walker is slowly becoming the primary support, she is already working on the use of a cane in therapy.

Kathy's biggest challenge continues to be her strength. Her right upper body and left lower body seem to be much stronger than their counterparts. Additionally, she is stronger distally than proximally. This is all coming along slowly but the advances in her strenght are noticeable on a daily basis. Today we had two doctors visits. The first was to Kathy neurologist who had treated her in the critical care unit. He is very pleased with Kathy's progress and reassured us both that her condition and recovery is purely a matter of time. However, he was sure to remind us both that Kathy needs to eat 2500 to 3000 well balanced calories per day, commit fully to her daily therapy routine, stretch, get massages, see her psychologist and most importantly remain patient. I am certain that the two obstacles from this list will be the calories and the patience!

The second doctors visit was to our family doctor to get him up to speed on Kathy's condition in case we need any additional help going forward. This was a quick visit and after meeting with us he also reassured Kathy that time is what she needs.

Treadmill Work!

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Weekend Update

The Memorial Day weekend holiday was a great opportunity to relax on Kathy's first weekend back. Of course Kathy still had to do daily training work with stretching sessions and upper / lower body strength work. Twice a day we did stretching and added in strength for the upper body in the morning and strength for the lower body in the afternoon. We have also been closely monitoring Kathy blood pressure and heart rate as these are still slowly coming back to normal. She is still on two medicines to control them. We will ultimately need a doctors consent to release the meds, but the goal given to us by her therapy team at Kessler is to slowly wean her off them at home. As long as her blood pressure and heart rate fall within certain parameters she can take less and less of each medication. This has been going very well, and the meds are needed less often today than they were the day Kathy came home.

This past Thursday was Kathy's first day of outpatient therapy at Kessler. She will be working with two new therapists so thursday was a bit slow as both therapists did assessment of Kathy and got to know her. Additionally, Thursday proved to be a difficult day. Kathy told me that she woke up "pissed off" that this had happened to her. Being home and in her own space is good but seeing her family, friends, and neighbors outside enjoying the weather and season was upsetting because she can not fully share in that yet.

Of course Kathy proves daily that she is making great progress. Two key transitions already took place over this weekend. First, we decided to not use the walker inside the house, provided that someone is with Kathy to hold her hand and grab her belt area if she loses balance. Second, Kathy walked under her own power from her car, down the driveway, up the ramp to the front porch then into the front door! This was awesome for Kathy and it was obvious that development made her feel good about her progress.

We are looking forward to more gains over the next couple of weeks.

First Full Day Home

Kathy's first full day home was very busy. The house needed some attention with laundry and putting away some of the items that had accumulated over the past 2 months. We also had multiple stretching sessions and had to return to Kessler at 1:00pm to begin an outpatient therapy. Kathy will again have both OT and PT. She met with both therapists who do their own initial assessment and start her on a newly customized therapy plan. Other than the travel, the outpatient therapy room at Kessler seems to be much more active than the inpatient therapy room. It seems likely that the inpatient therapy had reached a point where it no longer was challenging her to the extent that she needs to be work.

One of the benefits of being home is that there are no longer any restrictions on how Kathy moves around. Now the wheelchair just stays in the doorway and is pretty much only for the times when we leave the house. Inside the house Kathy walks using the walker and sits normally on the couch or at the kitchen table. This new amount of walking and moving around will be great for her strength gains. We will still be monitoring her blood pressure and heart rate as she is still on medications for both.

Kathy's appetite is still very small and getting good food in meaningful amounts is difficult. Kathy's first night home she was able to do her first grocery shopping in 2 months using the PeaPod service. PeaPod allowed us to select all of the groceries that we want online then schedule the delivery - for just six dollars extra! This was great and allowed Kathy to really select what she wants to eat. This should be good for getting appetite back. The weekend is going to be filled with relaxing, yard work and hopefully some walks outside.

The official going home picture!!

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New Developments

Everyday brings something new! Yesterday Kathy called me very excited that she had walked without the walker! The only support was holding the therapists hand. At my visit today, I spent sometime in therapy with Kathy and was able to walk with her holding just her hand. This was awesome and everyone in the therapy gym was checking her out!

The next steps on Kathy's agenda are figuring out outpatient therapy times and a support structure for her time at home. Kathy is still in a phase called "contact guard" which requires her to have someone present with a supporting hand on her when she transfers, walks, or moves in anyway out of or into a chair / bed / walker. While she is in this phase and at home someone will need to be with her at all times. Even though she could likely do most things on her own the risk of additional injury is still high without the support.

We have a good idea how we are going to staff the house to support Kathy and will firm this up next week. We also decided what times will be best for her to travel back to West Orange for therapy. Hopefully these times will also work for Kessler. Last on the list is adapting the house to Kathy's needs. There will be a ramp for the front door and front porch. Also, additional railings in the stairwell and well placed chairs in the house. The throw rugs will be taken up for easy wheeling / walker use and we will likely move the kitchen table to create a bit more space to move around.

Six more days then into the next phase!

Kessler last day finally determined

Kathy's stay at Kessler has been extended by one week. Her final day will be next Wednesday 5/26. Over the past few days Kathy and I have gotten into the idea of her coming home, so an extension of her stay at Kessler is nothing monumental at this point. However, it will give us additional time to make arrangements for care, plan her outpatient therapy, and most importantly give Kathy extra days to make strength advancements prior to coming home.

Kathy's original goal was to be home by the end of May with the ability to walk and function fairly easily within our home. She will certainly make the time goal that she set for herself, however Kathy feels that she is behind on the functionality side. I think she can make the functionality goal as well since she can easily walk 75+ feet and our house requires no more than half that from end to end. I believe that once Kathy is home, she will discover that moving around the house and functioning independently is achievable. This may include some strategically placed items ie. drinks, snacks, computer, and chairs for resting.

We are almost certain that Kathy will travel back to West Orange to do the outpatient portion of her rehab. This will be three days a week for two hour sessions. Additionally, there will be home stretching and strength exercises (we practiced some of these today). In preparation for coming home, tomorrow afternoon Kathy and I will be doing additional training for transfer and support scenarios that could come up in real world situations.

Good Week

This has been a very good week but definitely had its stressful moments. Kathy has made many improvements in strength and stamina. Her walking distance has improved to about 75 feet with the walker and she told me today that her legs feel similar to how they felt the day she walked into the hospital on March 27th. She is also doing some of her transfers totally under her own power, in fact getting out of the car today I did not even need to spot her. Earlier in the week (Tuesday) her catheter was removed and apparently this can present problems where people have trouble regaining the same level of control that they had prior to the catheter. Of course, for Kathy this was not the case and once it was removed it was as if the catheter had never been there.

Friday, Kathy and I learned that she will likely be discharged from Kessler either Wednesday this coming week or potentially a couple days later in the week. This will be determined sometime on Tuesday. This did come as a surprise and initially both Kathy and I were very apprehensive and even a bit shocked about this as we felt that she needs more time. However, the determination is made based on whether or not Kathy needs medical support ie. a doctors care 24/7. Both Kathy and I have a substantially more holistic idea of what medical means but it seems that in the doctors and insurance companies eyes medical has to do with medicine. How a body functions and an individuals ability to be independent is not a medical issue but a social issue.

Since Kathy truly no longer needs the support of a medical doctor and medicine (as defined), we both understand that coming home is probably for the best. In fact, the idea of Kathy coming home has grown on me over the weekend and I am now feeling that this is the best thing. She is ready to be back in her space and with her family and friends. This will allow her the fastest progression through the next few months of strength building. Outpatient rehab will be the next step along with strength building and stretching at home on a daily basis.

I will be very excited to have Kathy home!!

Day Pass

Yesterday was Kathy's first day outside of the hospital since March 27th. We started with a plan to go for a drive and then a walk in the local park. We drove north a ways passing the park we hoped to return to and then west towards the Caldwells on Bloomfield Ave. The drive quickly became goal oriented and we never made it to the park. About 45 minutes into our ride Kathy suddenly wanted to go home and see her house, street, and take a nap in her own bed. I was more than excited to oblige this request. I have found over the past few weeks that it takes almost exactly one hour to get from the Oranges back down to our house. Yesterday there was a bit of traffic so an hour and ten minutes later we were in the driveway.

Kathy was a bit nervous the entire way down. She wasn't exactly sure what she was nervous about, maybe seeing the house or her wheelchair not fitting properly in the house. However, all of this worked out and soon Kathy was napping in her own bed and had "Bravo" on the TV instantly. Being home for a even a short amount of time was wonderful for Kathy and myself. It created a brief sense of normalcy at an otherwise very strange time in our lives. I can't wait for her to come home again.

Friday / Saturday Day Pass

Yesterday started very well for Kathy. She told me that in morning PT she increased her walking distance and was able to do this with no assistance from the therapists, they stay very, very close though just in case. Kathy did some visualization work on Thursday evening for her walking. She visualized her leg lifting then landing heal, toe, push and all over again on the other side. Since Kathy had a tough time walking earlier in the week, she felt this would help prepare her for Friday's work. In this case it did and her walking was good, even on both sides of her body, with her heals hitting first.

Kathy reported that the last of the pins and needles feelings are finally leaving her feet and toes. This has been gradually improving over the past two weeks from the knees down through the feet. Additionally, her doctor plans to do a full re-assessment of her capabilities next week. This should be interesting as now there is a base line to compare against (the day she arrived).

A test was run on Thursday to determine if Kathy has any urinary tract issues or infections. Based on the results of this test it is very likely that her catheter will be removed on Monday. This is the last tube to be removed! However, this presents a new set of challenges and fears. Once the catheter is out Kathy is on her own for urinary control and this is not likely to be a problem but sometimes finding assistance to transfer to the toilet is a problem. At times the nursing staff and aid staff at Kessler is a bit overwhelmed and not always able to respond in a meaningful amount of time, not consistently, but occasionally. Of course, even occasionally will not be acceptable once the catheter is out. Based on this fact, before it is removed Kathy plans to ask a few questions to her doctor.

At times, there are reminders of Kathy's home life, school life, and yoga world that bring on emotional moments. Yesterday Kathy received a card from one of the students that she teaches at McGinn Elementary. The card was very sweat and heartfelt and probably not as much the card itself but the personality of the young person who created it. Opening this card became a very emotional reminder for Kathy of everything she gave up in her life to go back to college and become a teacher. She expressed her frustration that just as she began this wonderful new chapter in her life (teaching), she now has to fight to save it after fighting to get it. Yesterday, Kathy wanted nothing more than to return to her school and see all of the young faces that make each of her days teaching so special.

Feel Better Mrs. Fritz

Today (Saturday) will be a cool day. Kathy received a day pass to leave the Kessler facility. Since we had practiced car transfers and also stair and curb obstacles with the wheelchair, we are now allowed to leave using the day pass. I can't wait to get Kathy out and about again. We may start with just a drive but will see where it goes after that.

Car Transfers

Today Kathy and I learned how to do a car transfer. This is wheelchair to passenger seat of the car. We practiced this in the therapy gym using an actual mock up of a car! I was a bit intimidated by this at first, but quickly found that it is very easy. In fact Kathy does almost all of the work. I face Kathy with the door behind me and guide her from the chair to the passenger seat by grabbing her pants around the belt loop area. Kathy places one hand where she is going (car seat) and one where she was (wheelchair) and just slides over. Hopefully we will get the chance to go out very soon (maybe Sunday). Leaving Kessler does require prior written authorization from Kathy's doctor. I am assuming that means a certain time to leave and a certain time to return.

Before we practiced car transfers, we practiced wheelchair to bed transfers. I had been watching the nurses do this and basically followed their lead, apparently I had been doing this incorrectly. The big difference between what the nurses do and what the therapists do, is the amount of work Kathy needs to do to accommodate the transfer. The nurses move the patients in the quickest manner, which seems to be just pick them up and move them. Kathy's therapists want me to lightly support her and make her stand up and do the transfer using as much of her own strength as possible. Kathy told me she liked the way I was doing the transfers because there was no work on her end, now that I know better that is all over!!

Once all transfer training was complete it was on to the walker again. This time no walking, just standing. The goal was for Kathy to stand up into the walker and be able to stand for a longer period of time that her last therapy session (about 45 seconds). Today Kathy was consistently standing for a full minute and even briefly took both hands off the walker and stood under her own power. This was totally awesome to see, and it surprised Kathy as well.

I am looking forward to what tomorrow will bring.

Weekend Update

Kathy continues to make progress with her recovery. The major muscles of her upper body are working well but the primary issue for her continues to be a lack of strength and fatigue. Kathy's core muscles are strong and she was able to sit up on her own yesterday as she moved to the side of the bed for a transfer to the wheelchair.

Kathy is no longer using the lift to move from the bed to the wheelchair. This is now done via a bed to chair transfer. The person helping Kathy with the transfer gives her a decent amount of support in moving directly from the bed to the chair. Kathy is also able to use her core and her arms to move herself back in the chair to the most comfortable position. This was not possible a week ago, as she still required assistance to move back in the chair to a comfortable position.

Now that both the feeding tube and trachea tube are out, all that remains is the catheter. This will likely go away very soon as well. I think this would be a good thing, even if it is an inconvenience. It would get Kathy accustomed to having to go to the bathroom on a regular basis again and reinforce her transferring skills.

Over the weekend there were plenty of visitors to keep Kathy company. Additionally, she did a full day of therapy on Saturday to make up for her missed therapy sessions earlier in the week. I learned that there is a strict therapy documentation rule in order to adhere to insurance guidelines. Insurance mandates that a patient in acute therapy must do three hours of therapy five days a week. Missed therapy sessions must be made up on Saturday or Sunday, but it has to be three total hours in each day of therapy.

Tomorrow will be an exciting day! I have been invited back into therapy to learn how to do a car transfer. Once Kathy and I are proficient at this (hopefully tomorrow) I will be able to take her off campus. This could mean a dinner out, movie, the mall, the park, (Z's birthday party!). I can't wait!!

I will update tomorrow after we have learned this new valuable skill!

Get Well Soon!

Kathy's new get well card from the Sids Bikes team. Thank You!
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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 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.

Good Shoulder Rotation!

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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.

Standing Up

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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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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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.

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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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.

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.

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.

Transport

I am so very happy, and so is Kathy. Transport will be here at 11:30am.
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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.

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!!

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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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.

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.

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.

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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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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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 :)

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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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.

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

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.