Christmas 2016

Christmas 2016
Celebrating Christmas at Grandmor & Grandpa Bob's

Saturday, October 22, 2011

The latest news

Still trying to blog more than I have in the past couple months. Last week was a busy one. I have begun seeing 2 new doctors, a neurologist and a neurourologist, to see if there is something more that can be done for this neuropathy in my feet and calves as well as some other related medical issues I have been experiencing. That has resulted in a number of additional medical tests which take a lot of time, especially since Terri and I have to travel downtown for the tests. The good news is that I am still leading a fairly normal life even though there has been little change in the neuropathy. The neurologist overseeing my EMG test last Wednesday found the results interesting ( a term I have found I don't like to hear in medical testing) because he had rarely if ever seen a case like mine in which the feeling ends abruptly below my knee rather than ending more gradually. He will discuss with my neurologist to see what, if anything, can be done. The key words here are if anything as there are many cases of neuropathy that cannot be treated and do not recover. Please continue to pray that this is not the case. In the meantime I continue with physical therapy to compensate for the neuropathy and do fairly well in getting around with and without my cane. Terri and I try to get away to Michigan most weekends to enjoy the beautiful fall color and cooler weather. It's great to be able to get away and decompress. The best news remains that, as far as the cancer, I am in complete remission. The other great news is that Terri and I will be babysitting for Anna next week while her mom Katie, our daughter-in-law, will be at a conference in the Chicago area. Andrew will be down for a few days and Elizabeth will come over to help out so we are looking to having lots of fun.

Sunday, October 9, 2011

A Perfect Day (cont.)


Our team just before the run


Terri and I on a beautiful morning!




Ready to go

Elizabeth and I before the race


We're off!

When the going gets tough, the tough call Bob!
Marty, Terri, and I on our way


My brothers and I taking our one and only break
Closer and closer to the end!



I did it! Cheers from Elizabeth and Sister Sue!












A  kiss from my angel!

Celebrating my success! Andrew, Elizabeth, me, Terri, and Mike. We missed Anna and Katie, but they walked the weekend before with Andrew in MN!
































Tuesday, October 4, 2011

A Perfect Day

I did it!  I walked the entire 5K of the MMRF Race for Research on an absolutely beautiful fall day in Chicago.

We did it!  With over 40 team members in 2 cities and the hard work of Terri, Elizabeth, and Andrew we were able to raise over $11,000 to go towards research in finding a cure for multiple myeloma. Thanks to all of you who took part in the race/walk and/or contributed to our cause.


Enjoy the video as I crossed the finish line below.  More to come.

video

Wednesday, September 28, 2011

It's been awhile

It's been awhile since I blogged. I can't believe how much is going on in my life, but the time just flies by. Got some very good news yesterday. The doctor is very happy with my progress. He has reduced my pain medication and taken me off the daily injection I have been giving myself for the last year. That is GREAT! He's also delayed the reintroduction of my main chemotherapy maintenance drug for another month for which I am happy.

Time to celebrate AND WE WILL after the 5K MMRF Race for Research this Sunday. Thanks to all of you who have signed up to walk or run. We have had over 40 team members in either Minnesota whose race was last Sunday or Chicago for this Sunday's race. Thanks to all of you who have donated to the cause which has had a significant effect on my life. The maintenance drug I mentioned above is a direct result of the funding provided by MMRF for research to accelerate clinical trials.

If you'd like to join our team in Chicago there is still time. If you'd like to donate to our cause, there is still time, too. Go to

http://support.themmrf.org/goto/bobsyouruncle to sign up or make a donation. If that's too confusing, just make out a check to MMRF and send it to me.

Our goal is $10,000 and though we have a ways to go we have made a significant dent in it. We'd love your support! In the meantime enjoy the photos from the Minnesota MMRF Race for Research. Cousin Jey took 3rd place!! Way to go, team!!

Anna, one of our younger team members

Family spirit

When the going gets tough, the tough call Bob.

Our MN team--what  family spirit!

Success!!

Saturday, August 27, 2011

One Year Anniversary

It's been one year since I got the news about a tumor on my spine that required an immediate operation and resulted in my diagnosis of multiple myeloma. And what a year it has been! Fortunately I had the greatest surgeons and doctors who not only operated at the highest skill level but also had bedside manners that helped to carry me through this difficult time. And the majority of nurses and therapists were outstanding both in skill and manner as well. That technical care and skill was critical to the recovery which I have made so far. But I cannot forget the tremendous support I have received from Terri, Elizabeth, Andrew, Michael, and Katie and my siblings and their families, our pastors, chaplains, and countless friends, church members, and even strangers who helped us all in so many ways, including their well wishes and prayers. I am here today by the grace of God in response to the care and concern of so many people and for that Terri and I are most grateful.

Terri and I did not realize it at the time, but we chose this week to spend in Michigan with the family. What a wonderful time we have had, especially sharing the beauties of Michigan with little Anna! The weather could not have been better. Sunny blue skies, warm--not hot--days, cool nights, and warm water for swimming. The sunsets have been spectacular. Elizabeth and Michael even sang in church last Sunday. What better way to celebrate how far I have come!

Just a reminder that the 3K walk/run for MMRF (Multiple Myeloma Research Foundation) is October 2. If you live in the Chicago area, please plan on joining us for a good time on what hopefully will be a beautiful fall day. If you don't live in the Chicago area, we would appreciate a donation to the cause. MMRF has made great strides in the treatment of multiple myeloma over the past 10 years. Whether you are participating in the walk, want to come down to cheer us on, or are interested in making a donation, please go to our team's website Bob's Your Uncle at  http://support.themmrf.org/goto/bobsyouruncle
We'd love to hear from you.

Thank you.

Wednesday, August 10, 2011

Who? When? What?

Found this sign while I was out and about! Kind of describes my last 6 months, especially my time in the ICU!

Tuesday, August 9, 2011

Save the Date: MMRF Race for Research, Sunday, Oct. 2 @ 9:30 AM

If you live in the Chicago area, please plan on joining us on Sunday, Oct. 2 at 9:30 AM for the MMRF Race for Research in Lincoln Park. Many of you may remember that last year the race was held just a couple weeks after my diagnosis of multiple myeloma. My daughter Elizabeth and niece Heather organized a team they called Bob's Your Uncle, which is an expression in England that means "It's ok" or "all will be well" and raised over $2000. Given recent tests, showing my cancer is in remission, it seems to be a fitting name for our team again this year.
Last year's team

Over the last 10 years the Multiple Myeloma Research Foundation (MMRF) has aggressively been funding research to cure the disease. Its founder, herself a MM survivor, was recognized last year as one of Time Magazine's Top 100 People in Medicine. Her story was featured on the Today show earlier this year. A link to that interview appears on this blog.

Please give serious consideration to joining our team this year. The distance is 5K and you can make it a leisurely walk or a race. Last year I was in the hospital at the time of the walk, but I am looking forward to being a part of it this year. We hope to have a tent and special T-shirts and refreshments.

And if you don't live in the Chicago area or can't make it that day, please consider making a donation. Our goal this year is $10,000. Please follow this link attached to either join the team or to donate to the foundation.

http://support.themmrf.org/goto/bobsyouruncle

Looking forward to seeing you in October. We are hoping for a beautiful autumn day in Chicago.

Saturday, August 6, 2011

Progress

Lots has been happening over the past couple weeks--so much so that I just haven't had a chance to post an update until now. About 2 weeks ago I began outpatient physical therapy at a new location, Lutheran General which is closer to my house. While things are going well with my new therapist and he is trying some new treatments with me, I do miss the infectious personalities of my day rehab therapists at the Rehab Institute. And since I am now only going twice a week for an hour each, the pressure is now on me to keep exercising on my own in-between times.

My new therapist also recommended that because of my progress I get a new set of leg braces made of graphite instead of plastic. They are lighter and more flexible than my prior ones which is great. I'll also be able to wear them with any of my own shoes rather than the larger athletic shoes I had to use with the plastic braces. I'm going through a break-in period with them now, but I know how much more flexible they will be once I make the transition, especially when I tell you my next big news.

I had an appointment last week with an occupational therapist who specializes in adaptive driving systems. After some pencil and paper exercises and a vision test, she had me drive with an adaptive driving instructor for an hour and a half. Side streets, main streets, and finally the HIGHWAY! What a surprise to me! And all in my plastic braces with no adaptations! And guess what? I passed! I haven't been driving since, but I hope to practice in Michigan where the traffic is less. We'll see how it goes.

While all of this is good news the fact still remains that the neuropathy in my feet and legs has not changed much. Hopefully it will improve in the months ahead. I do need to practice patience and remind myself that just 5 months ago I was critically ill in the ICU. Thanks to the prayers and hard work of so many I have come this far. Hallelujah!

Friday, July 22, 2011

Another Milestone

Finished my day rehab therapy today. It was three months of hard work, but I am very happy with the results. I went from sitting in a wheelchair with short walks with my walker to walking unaided in my braces. In fact today I walked 1408 steps in 6 minutes. My progress is all thanks to the excellent therapists I had at RIC/Northshore. They pushed me hard and kept the workouts interesting in a manner that made it enjoyable at the same time. They were able to come up with work arounds for the neuropathy (tingling, numbness and pain) in my feet so I am able to walk in the braces.

Now the next step is to hope and pray that my feet do heal so that I can complete my therapy and build up the strength in them to walk without my braces. To that end I will have an EMG next week to assess the nerve damage in my feet. In the meantime I will continue physical therapy for two hours a week as an out patient and implement an exercise program to avoid losing any ground. I also have a meeting next week to assess whether I will be able to drive with the use of hand controls. I'll keep you posted on how that goes.

Please continue to pray that the neuropathy in my feet is healed so that I will truly be able to walk again.

Peace.

Thursday, July 14, 2011

Another Milestone

Just got my first haircut since my hair grew back. Another step toward normalcy!
What do you think?

Tuesday, July 12, 2011

What's Next?

Beginning the last 2 weeks of day rehab therapy. The therapists are still working me just as hard as when I first came--in fact, harder, with more complicated exercises--which I really appreciate. They have  brought me very far in spite of the problems with the neuropathy in my feet. The one disappointment is that I'll still be wearing my leg braces when I leave there. Please continue to pray that my feet will heal completely and I will be able to walk unaided some time in the future. And that the carpal tunnel syndrome in my hands clears up. In the meantime I will be moving to outpatient therapy a couple hours a week so I don't fall behind in the progress I have made. I'll also be exploring driving lessons using hand controls. We'll see how that goes. And who knows what else will come along as I begin the next phase of my recovery! I'll keep you posted.

Tuesday, July 5, 2011

4th of July

Our first time to cool off on the beach 
Had a great time in Michigan over the holiday. The weather was perfect. Even got into the water and paddled around a little bit with the help of Terri, Elizabeth, and Mike. Click on the video below to see how I did. Another goal reached that I did not even consider would happen this year.

video

Wednesday, June 29, 2011

Smiles

Who's at Anna's 1st birthday party? (Grandpa Bob, Grandmor, and Uncle John)
Love that cake!


Andrew, Katie, and Anna celebrate


Grandmor Terri and Anna in Michigan

Anna on the beach in Michigan

Friday, June 24, 2011

The greatest news of all

Got wonderful news when I visited my doctor Thursday. The PET scan of my whole body that I took early that morning showed that I am 100% cancer free.  Whooo-hooo!  Thanks and peace to all of you who hoped and prayed so diligently for me to make this miracle come true. Please continue to pray that it will remain that way.

With sincere thanks!

Bob

Thursday, June 23, 2011

Success

What a lot of steps!
One last dune!

Success!


Success! I made it down the dune and was able to walk on the beach in MI this past Monday! I have to thank my therapists who worked very hard to simulate the conditions on the walk to the beach during my therapy. Thanks also to Terri who had the great privilege of escorting me to the beach so I didn't fall--which I didn't. All she had to do was hold tight to the back of my pants a couple times! Oooooo-weeee!

Now all I need is a beach chair, umbrella, some SPF30 lotion, and a good summer book to relax on the beach. WHOOPEE!  Actually, I will still need a lot more work before I can go swimming in the lake or walk barefoot on the beach, but it's a start! I'll keep you posted!

Cheers!

Saturday, June 18, 2011

Beach walking

When I first came to outpatient therapy a month and a half ago I told the therapists jokingly  that one of my goals was to be able to walk on the beach by the end of the summer. They remembered and yesterday my PT, Jenna, took me to Glencoe Beach nearby on Lake Michigan where we not only walked on the sand but also walked up and down the stairs and ramps there to mirror the pathway I need to take to get to the beach. According to Jenna, I passed with flying colors. Hallelujah!! (Of course, I still need to wear my braces and gym shoes, but I can deal with that. I'll take them off when I get to the beach and am safely seated. I can always put them on again when Terri and I decide to walk on the beach. Great exercise!!)

Terri and I are up in MI at our little stuga this weekend. If the weather is nice, we might even try and get down to the beach. I'll keep you posted.

Cheers!

Wednesday, June 15, 2011

Anna's 1st Birthday

Had a wonderful time in MN this past weekend celebrating our granddaughter Anna's 1st birthday. It was great to play with her and I think it was the first time she and I really had some time to bond. She definitely knows who Grandpa Bob is--she already had a fondness for Grandmor (Terri). Our son Andrew and his wife Katie had a great party for Anna on Sunday with delicious food and lots of good times. It was fun to see all of the presents she received as many of them reminded me of toys Elizabeth and Andrew used to play with.

Last week was a monumental one for one other reason. Terri finished her last day of school and is now officially retired. We celebrated by dividing up our drive to MN (it was the first time that Terri had driven north) so it could be a more relaxing time when we left on Friday afternoon. Stayed at a nice motel in Tomah, WI called the Cranberry Country Lodge and celebrated by going out to dinner for ribs. Terri has a lot of things on her retirement to do list and is looking forward to tackling them this summer. We're also working so I can do more things independently around the house.

I continue with therapy. Not much change in my condition except that the neuropathy in my hands seems to be accelerating so that I am now dealing with it during the day rather than just at night. The therapists have been great in giving me exercises to do and the doctor has recommended braces to wear at night and additional medications to take (Ugh!). Hopefully I will see a change in that condition in the not too distant future. My feet have shown a little improvement but still have portions with no feeling and lots of numbness. That continues to halt my progress in walking, driving, and similar activities. Please continue to hope and pray that they will show more improvement sooner rather than later.

Thursday, June 2, 2011

A Good Report

Doctor is very pleased with the status of my multiple myeloma. A PET scan next month will confirm how well I am doing. He has discontinued 3 medications since the pneumonia appears to have cleared up. Hallelujah!

Issues still remain with the neuropathy and drop foot in my feet and the neuropathy in my hands. If those would heal, especially in my feet, things would definitely improve, including my ability to stand, walk, and run easily. No one knows when that will be. It is simply a matter of wait and see!

Wednesday, June 1, 2011

Back-to-Back Therapy

Just finished 2 days in a row of therapy. That's 12 hours in 2 days! Quite exhausting! Especially now that I no longer have speech therapy which gave me some time to sit rather than work out. Fortunately there were some perks as some of the exercises happened outside on a beautiful day in Chicago. Still I came home each day and took a nap!

I still have neuropathy and drop foot in my feet so they are not responding very well. The physical therapist works on them every day with the hope that they will respond at sometime. I'm also experiencing some neuropathy in my hands which causes nerve pain and numbness, mostly during the night. I have to wear braces on each of my hands nightly to relieve the pain. Please continue to pray that my feet and hands will heal to reduce the pain and give me a better opportunity to walk smoothly.

Cheers!

Tuesday, May 31, 2011

A New Form of Therapy

Went bowling today as a part of my therapy. With my braces on it was not easy to do. I cannot run so basically I had to stand at the foul line and release the ball. My score was nothing to talk about (I finished 3rd), but it was great fun and great exercise. I was exhausted when we finished the game and it was only 11:00 in the morning! I still had my afternoon therapy sessions with lots of exercises! When I got home today, I was beat.

A Great Holiday

It was great to have all of the kids in town for the holiday. Grandmor Terri and Grandpa Bob especially enjoyed spending time with our granddaughter Anna. She is such a sweetie. Thursday night was Terri's school retirement dinner. It was held at a local restaurant. The food was delicious and it was wonderful to see Terri honored by her colleagues for the excellent work she has done as a teacher.

On Saturday we headed for our lake house. Although it rained most of Saturday and Sunday, we still found lots of things to do. Had a great meal Saturday night at the family summer house with the family members who were up for the holiday. On Sunday we celebrated my son-in-law Mike's birthday with a delicious meal from the grill. We were very happy that Pastor Kyle, our local pastor, could join us. I was deemed grillmaster for the night. It was tiring, but great to be back in the swing of things. Of course, I had a couple of assistants who kept an eye on me and helped me out. Monday it turned very hot and while I would have liked to get out and enjoy the day, I was very tired and relaxed inside. Elizabeth and I played some Wii games which was great therapy for my balance, endurance, and coordination. All in all, a fabulous time was had by all over the holiday.

Tuesday, May 24, 2011

Lots Going On

I can't believe how busy I am day after day. Therapy, of course, takes a lot of my time and I continue to make progress there. The key remains the healing of my feet, especially as it relates to their numbness and drop foot, a condition which prevents me from fully lifting my feet so they drag on the ground. I wear braces up to my knees on both feet to overcome this problem. I can walk better with the braces on, but you can imagine that they are quite cumbersome. I'll be very happy when I can walk without them. I'm afraid that will be a long way off.

In between therapy, I try to fit in all of my doctor appointments, lab tests, x-rays, and the like. It's amazing how much time that takes and how long the appointments last--in some cases, almost an entire day. 

But Terri and I are still finding ways to relax and enjoy some time together. We went up to our Michigan home this past weekend just to kick back and celebrate our 35th wedding anniversary. Enjoyed having lunch at the local restaurant in Three Oaks, figuring out the landscape for our home, setting up our porch for the summer, and going to church on Sunday. What a great weekend!

Starting my fifth week of therapy this week. We'll see how that goes.

Monday, May 16, 2011

Latest Update

At this point, I have completed 3 weeks of therapy and begin the fourth week tomorrow. It's nice to have 3 days off (Sat.-Mon.) after 2 days of therapy back to back (Thurs.-Fri.). The therapists really work me hard which I like but it is still great to have those 3 days off.
I feel that I have reached a plateau lately and am not seeing much change in my recovery. I've had a couple minor injuries in the last week, including a strain of the cartilage between my ribs and breastbone, which have slowed me down somewhat. On the other hand, they are using Wii to help me with my balance and coordination so I have enjoyed playing tennis and bowling, especially at the end of the day when I am a little tired. It really has helped my balance as I play without my walker and just rely on the wall if I need some support. I told Terri to tell the kids that they can get me a Wii set for Father's Day.  What a great way to continue my therapy at home!

Sunday, May 8, 2011

Coming along

Had another good week at therapy but the progress is slow. Still working at walking more independently. Also working on building strength and endurance after so many weeks in intensive care. What a workout, but it's worth it! Not sure when I will be finished with therapy, but my guess in mid-July. We'll see how it goes.
Cheers!

Tuesday, May 3, 2011

Working Hard and Seeing Progress

I am now into my 2nd week of therapy and things are going well. I am getting physical, occupational, and speech therapy. (Not sure why I am still getting speech therapy, but there is a good chance that will end after this week.) The therapists are pushing me hard the 3 days I am there which I like. Today I reached a milestone. The physical therapist had me walk 2 circuits (about 123 feet each) with only my leg braces and a cane and 1 circuit by myself without any aids except my braces. That was the first time I had tried either and did fairly well--or so the therapist said. So that is definitely something to celebrate. (Right now, I am primarily getting around with a walker.) There is still a long way to go to walk independently, but I am very happy with every milestone I pass. Ever onward!!

Saturday, April 30, 2011

Writing Comments

I have heard from some of you that it is difficult to leave comments on my blog without setting up an account. I have fixed that so now all you have to do is click on the Comments phrase at the end of a post and it will immediately take you to a new screen where you can enter your comments and then post them. Please let me know if you continue to have problems with leaving comments and I will see what I can do to fix the problem. Thanks.

Thursday, April 28, 2011

Busy! Busy! Busy!

Sorry it has taken me so long to respond but Terri and I have been incredibly busy since I got home from the Rehabilitation Institute last Friday. It is amazing how much time it takes to do simple tasks, such as brushing my teeth and getting dressed, when using a wheelchair or a walker. I also have outpatient physical and occupational therapy all day 3 days a week. How exhausting! When I came home from the institute I was able to walk short distances with the aid of braces and a walker. Now I am pushing to be able to reach my long-term goal of walking on the beach unaided before summer ends.

Had a wonderful Easter weekend with all of the family here. In fact, Andrew, Katie, and little Anna, who is 10 months old, arrived about 15 minutes after Terri and I arrived home from the institute on Good Friday. What a great way to celebrate my homecoming after 11 weeks in the hospital . The picture shows me enjoying Easter dinner prepared by Terri and my son-in-law Michael, the first delicious meal I had eaten in quite some time. 

My journey so far has been quite miraculous. Please pray that it continues to be so and that my feet completely heal. 

Peace.

What a wonderful meal for Easter after 11 weeks of hospital food!

Friday, April 22, 2011

A Very Special Day

I'M HOME!   And happy to be here!!  More to follow in the coming days.

Wednesday, April 20, 2011

Progress Continues

Bob continues with therapy in preparation for coming home on Friday! I'm also learning how to help at home. I've learned so much being apart of daily therapy but now that we are going to do it on our own, the pressure is on. It's amazing how much we had to think through just to take a shower! They are trying to wean Bob from the oxygen (however he is getting so little that it wouldn't be an awful thing to come home with...more like a safety precaution) His medication for the pneumonia is no longer through an I V but orally once a day and today or tomorrow he has another x-ray checking on the progress of the lungs. So progress continues! Bob's list of medications is incredible but he knows how to make a great spreadsheet that will help us remember what and when! Thank goodness for his computer knowledge!

We are so looking forward to Friday. Andrew and Katie and little Anna will be in. Elizabeth and Michael will be over so we will have lots of help adjusting to home. Our house on Chester will no longer be a doghouse but OUR house! Thank you God!

Saturday, April 16, 2011

A Good Day

The doctors are still treating Bob's pneumonia. Yesterday they gave him 2 units of red blood which isn't unusual after a stem cell transplant. This will build up the iron and oxygen in his blood. Today he just looked better. He walked 400 steps without resting and practiced walking up and down 12 steps. He wants to be ready to go home on Friday! He also enjoyed a visit from our nieces. We ordered in a Chinese meal from a local Chinese restaurant and spent a quiet, relaxing evening together. It was a good day!

Friday, April 15, 2011

Continued Progress

Bob continues to make good progress with his PT and OT. The plan is still to come home on Good Friday. The treatment for the mild pneumonia continues. The course of the medication is 7 to 14 days. Of course we are hoping it responds in 7 days so the coming home date isn't delayed but we also don't want to take any chances. Bob is very motivated with the PT but a little discouraged by the pneumonia. Who wouldn't be! Today we go to his oncologist for a check up. RIC is connected to NW with an underground access so even if it is raining, we don't have to worry. We did go out again this week and made a stop at Garrett's popcorn. Nice treat!!

Wednesday, April 13, 2011

Mild Pneumonia

Bob has been experiencing cold like symptoms since Saturday. The doctors thought it might be allergies since a cold and an allergy present the same way. Yesterday while checking Bob's lungs they heard a wheezing so they did a chest x-ray. Last night they told us there was something in the lungs and so they are treating him aggressively for a mild pneumonia. He has an IV medication every 6 hours for a week, respiratory treatment twice a day, an inhaler, an expectorant and they will be taking his vitals more often. Bob doesn't have a fever and his white count isn't up and those are usually symptoms of pneumonia. The only thing that he still needs is a small amount of oxygen that they haven't been able to ween off of him. It seems he needs this when he is doing therapy and exerting himself. I guess they felt he should be off it by now and maybe since he isn't, it is because there is this little infection. The doctors want to be on top of this because of his HISTORY!!!

This was a big blow to us last night but we know God is continuing to wrap His healing arms around Robert and he will get over this! The doctors said this shouldn't interfere with Bob's therapy but if he feels he needs a little more rest, he needs to let them know. They told us that hopefully Bob will come home on Good Friday. He was concerned that this mild pneumonia might cause to him to stay longer. The doctors said they didn't know that yet. It all depends on how he responds to all this treatment!

As for therapy, Bob has been flying! He walked 400 steps with his walker with only 1 stop. He has been practicing going up and down four steps, balancing on the parallel bars and while balancing, throwing and catching a ball, (so he'll be ready for little Anna), and exercises to strengthen his hips and thighs. He is a PT star. The therapists love him because he is so motivated and doesn't complain. He asks for more! If he has extra time in his therapy schedule and if the therapists have extra time, they ask Bob if he wants another session! Be careful what you wish for Bob!

So everyone, please continue praying. Pray that this mild pneumonia stays just that, pray for continued strength for Bob's legs and that his endurance continues to improve. Pray that he will be able to come home on Good Friday. He so wants to be back in his own house, his own bed!

Sunday, April 10, 2011

A Beautiful Spring Sunday

It was a lovely day in Chicago so we had another pass and went to a nearby park which over-looked Lake Michigan. What a beautiful sight!

Again Bob was able to walk 400 steps with his walker but this time he needed just one rest stop! He practiced standing, balancing and stretching while using the walker too. We went to church at RIC, and visited with Elizabeth and Michael and some friends. It was such a nice restful day to help Bob get ready for Monday and three and a half hours of different therapies!

The First Outing

I came home last night and I was so exhausted from our day activities that I was unable to blog! You must then realize it was a BIG day. Bob had to sleep well last night!

Bob continued with his fantastic PT progress. I think he accomplished more than his PT had even planned for him to do at his session. First he walked 400 steps with only two rests and then he worked on the parallel bars to improve strength in his thighs and finally he practiced walking up and down one step.

There aren't as many therapies on Saturday and Sunday so we requested a pass to go outside. This would be Bob's first time outside since January 31. We were both very excited. We took care of all of the paperwork and headed down Superior towards Lake Shore Drive. I was in control. Pushing the wheelchair was a new experience for me and watching for handicap accessibility kept me on my toes. Of course Bob helped too. We went to a park for a bit and then to an indoor mall where there is a lovely Treasure Island. Bob thought the deli looked exceptionally good so we purchased a side of Spanish corn relish, some Cheetos and a cranberry juice. We left the mall and found a bench right off Lake Shore Drive and Bob enjoyed his treats. From there we walked up Erie to the Corner Bakery 'cause we wanted to check out their menu for dinner. I would go back there later and pick something up.

Our outing was great! I did have a couple wheelchair problems at curbs that weren't that smooth but both times someone was there to quickly offer a hand. People are good!

We had a great time today and are so appreciative of all of God's blessings!

Friday, April 8, 2011

Improvement Every Day

Wow, it is amazing to me that every day I need to write something on the blog because what I wrote the day before is already old news! What a wonderful feeling. Today, at Bob's last PT session of the day, he walked 200 feet!!! He had to stop two times and rest a bit but the good thing is his heart rate and saturated oxygen number have improved so much each day. He really is getting stronger. The body is an incredible machine. Today we also went to a harp/meditation program presented by one of the nurses. A very relaxing way for Bob and me to spend a half hour. The music was especially beautiful and the relaxation techniques, helpful.

Bob has had some difficulty with pain control but today, with some new medication, the pain seemed to be better. Maybe that is why he did so well in physical therapy. I'm sure we all move better when we aren't in pain.

Thursday, April 7, 2011

Walking 40 Feet

Bob had PT early this morning and he was able to walk with his braces and the walker forty feet! What an accomplishment! We also practiced different transfers so now when I am there, he doesn't have to depend on his PCT to help him move from his wheelchair. I'm taking a family leave until Easter so I am able to be with Bob everyday. I'm most interested in watching his physical therapy and helping whenever there is a need. Yesterday we were able to take advantage of a pet therapy program and today there was music therapy and art therapy. Bob is pretty tired after his scheduled therapies but it was fun to go see the dogs and hear the medical personnel from the hospital provide the music. A little change of pace and a very satisfying day!

Wednesday, April 6, 2011

Braces

The braces have arrived. Bob was able to walk a dozen steps with them today. His legs and feet are very painful but he was able to walk better with the braces which start below his knee and go into his shoe. They give him the support which is necessary for him to be able to practice walking.

Today was a very emotional day. Being unable to walk is very scary for Bob and me. He is not afraid of hard work but he is worrying about how long it will take to get back to walking without all of these devices. The nerves in his legs and feet just need to start responding. We ask all of our friends for their continued prayers. We know how good God has been to us and I know He will continue walking next to Bob as he learns how to walk.

Tuesday, April 5, 2011

Learning About PT

It has been great watching Bob in therapy the last two days. He really is making great progress. They are making braces for his legs that should be ready tomorrow but today they just used his gym shoes and a borrowed brace on one leg and he was able to tell that when he has his own braces, he will have more strength in his legs and feet to help with walking. He walked about twelve steps with the help of the parallel bars and with his therapist, he was able to walk about 7 feet with a walker. I followed close behind with the wheelchair.

Bob really wants to learn how to transfer from his wheelchair to his bed and from his bed to his wheelchair. His therapist showed me how I could help him and we did such a fine job that she wants to video tape us for one of her presentations! He also wants to learn other transfers so he doesn't always have to call his nurse so tomorrow we will work on some other transfers. I'm so happy to help and be apart of Bob's therapy. I'm an extra pair of hands and his therapist is eager to have me involved.

Please continue to pray for strength in Bob's legs, ankles and feet. He so wants to walk on the beach in Michigan this summer.

Monday, April 4, 2011

First Day of Therapy

Monday finally came and Bob was ready. He had a good nights sleep and he felt stronger. During physical therapy he worked on standing and taking a few steps. His physical therapist decided he needed a brace for each leg that would start just below the knee for support and go all the way down the ankle and into his shoe. The braces will be made to fit Bob's legs and should be ready to go by Wednesday. I'll bring his shoes tomorrow. The therapist feels that this will give Bob the support that he needs for standing and walking. He also worked his legs on a machine that was similar to a bicycle. I took a video to record his activities and later to show him his progress. He had occupational therapy and an x-ray of his back too. He sat in his wheelchair all day and gladly ate each meal. In the evening they helped him with his first shower since the beginning of February. What a great feeling! Now he is watching the Butler/UConn game and hoping for a Butler win. With a busy day like today, he should have a good nights sleep.

Bob requested today that everyone pray for strength and healing of his legs, ankles and feet. He so wants to be able to stand and walk again. I feel confident that he will. I'm sure this is all apart of God's plan.

Sunday, April 3, 2011

Sunday

Spent a relaxing day watching the Cubs, (too bad they didn't win!) doing a crossword puzzle and visiting with friends. Bob is experiencing a little independence again like brushing his own teeth and washing up. He is getting better at maneuvering his wheelchair and keeps his positive, upbeat attitude. He is wondering what tomorrow will bring. :)

Saturday, April 2, 2011

Wheels

The best part about today was that Bob was given a wheelchair and he was able to get close to the windows and see his lake view. He also got out of his room for the first time in six weeks! He was so happy to have a tour of the new facilities. Progress! Evaluations were completed and next week they will decide Bob's therapy schedule and give him a tentative date for his return home. Bob was feeling more relaxed when I left this evening and looking forward to Monday morning.

Friday, April 1, 2011

Next Stop HOME!

Bob was transferred to RIC today. (Rehabilitation Institute of Chicago) This is hopefully his last stop before he comes home. His goals are to be able to stand independently and walk! At this time he has no feeling in his feet and the muscles in his ankles are very week. This could have been caused by the 5 weeks in ICU, weight loss, (he lost 40 pounds but has gained back 7!) or it might be a neuropothy from the chemo. The doctors feel pretty confident that Bob will achieve his goals. Tomorrow he will start his therapy with four hours of evaluation. Each day he will be spending most of his time out of bed and will even be able to sit in a wheel chair and get out of his room! He really is a happy camper. After a week they told him he might even be able to have a 3 hour pass and go outside for a bit. Bob hasn't been outside since January 31.

Please pray for Bob's strength to continue to grow and stamina for this intense rehab. He is a little nervous. I know God is by his side every minute of the day and before we know it, Bob will be coming home. We both can't wait!

Wednesday, March 30, 2011

Pics from Dad's Birthday

The birthday boy himself- always ready for
a party!!

Dad with his "girls"- Mom, Liz, & Aunt Sue


Dad and Mom with the "60" cake Mom baked for him- chocolate,
with white frosting, as requested. :)
Dad showing off the Iowa Bird House from the
Espinoza family. It will look great hanging
in front of the Michigan stuga.

The sweets table! Chocolate cake, Blueberry pie,
and cupcakes from Sweet Mandy B's!
Up close of the cake- the candles say "Oh No,
The Big 6-0!" You can see we have already been
enjoying the cake.
Balloons and banner behind the bed.





Here are some pictures from the big birthday party yesterday!

These pictures show the room decorations.

















To the left, you can see the decorations on his door. The signs say "60.... the party continues." The big 60 at the bottom is a sign-in for all his doctors and nurses to write him a birthday message!







What a Great Birthday!!!

Well everyone, the cards were a hit!!! We are still opening them up and enjoying each and every one! Thank you, thank you, thank you, to all our wonderful friends!!! You mean so much to us.

Bob's room is decorated with a party atmosphere. He has enjoyed family and friends visiting, phone calls, gifts, cake and more good news from his doctors. His trach is out and they are looking for a bed for him at RIC. (Rehabilitation Institute of Chicago) This is just down the street from Northwestern Hospital and Prentice Hospital which means that his wonderful oncologist will be able to check in on him. He has been a fantastic advocate for Bob throughout this entire journey.

It was suggested that we get a flip video camera so Bob can see all of the progress he is making. So, today I recorded him exercising and standing. Bob still doesn't realize how far he has come so this video camera can show him his progress. Great suggestion!

Elizabeth will be posting pictures from the birthday. Bob is looking great!

Monday, March 28, 2011

Speaking is much easier for Bob because today they put a cap on his trach and now he only gets a bit of oxygen through his nose. He sat in a chair most of the day and when his physical therapist came they practiced pushing up from a chair and with her help, standing. This takes a great deal of energy. Bob's feet, ankles and legs are very weak. She gave him a few exercises to practice throughout the day. Bob is very eager to practice so he'll be walking before we know it. She felt he had made great progress since Friday. For supper he ordered meatloaf, mashed potatoes and carrots. Yesterday he thought he needed a few snacks in his room! His appetite has returned!

Tomorrow is the big birthday. Bob got a card from our niece today that he opened and we hung up. I said we wouldn't be able to hang up all of his cards and he said he probably wouldn't get that many! Little does he know! Tonight I wrapped up a box of 67 cards! It will be fun to see his face when he opens up that present. We will enjoy chocolate cake and blueberry pie! Will post some pictures tomorrow night!

Sunday, March 27, 2011

Updated Photo!

Mike and I are hanging out with Dad today at Prentice. He had grown quite the mustache so Mike helped him shave it, and afterwards we took a picture of his new look. Starting to look like the same ol' Bob again. :) He can't wait to be able to wear his own clothes!

Spaghetti and Pears for Dinner??!!

Wow, has Bob's appetite improved. Saturday he ate an omelet and blueberry muffin for breakfast, spaghetti, pears and broth for a late lunch and yogurt and cereal to hold him over until Sunday morning! What a way to build up his energy! There is no physical therapy over the weekend but Bob is sitting in a chair, sitting up for meals, and eating meals! He still wants to know what's next and I'm reminding him that practicing the above is his work for the weekend. He wants to be ready for Monday. The doctors are so surprised how Bob is able to speak so clearly over the trach. They are thinking about capping that on Monday so speaking will be even easier for him. Bob continues to amaze everyone!! We know he is God's miracle!

Don't Forget- Birthday Cards for Dad!!!

This is Liz again. Dad's birthday is fast approaching but there still is time to send a card! We would love to collect 60 cards for him to celebrate his 60th birthday. You can mail them to either my mom's address or mine. If you need an address, email me at etespinoza@gmail.com and I will be happy to send it to you!! We know he will be surprised to receive so many cards and well wishes. He has already decided he would like a pie for his birthday dessert!!

Saturday, March 26, 2011

When I came to the hospital on Friday, Bob was very tired. They said he had had a good night sleep. It seemed like he was more tired than he had been all week. I think maybe he was just relaxed now that he was over at Prentice. He had cereal for breakfast, soup and jello for lunch, but this time he ate it all and for dinner he ordered a baked potato and soup and jello. Again he eagerly ate the soup and jello but didn't think the potato was so good. By night time he felt that his energy was coming back.

Physical therapy worked with Bob. He already new the therapists from when he had been at Prentice and they were thrilled to be helping him again. They were impressed that he already could sit at the edge of his bed on his own. So now it was time to try and stand up. Bob did well, but he realized it was a lot harder than he thought. In fact, it really was a BIG deal!! Two times they helped him stand by putting a belt around his middle and then he pivoted his feet to a near by chair. This was a lot of work! He was able to sit in the chair for four hours which was fantastic! He thought it was really comfortable and a great way to spend the day. PROGRESS!!

When I left last night Bob was completing another breathing treatment. Everyone can't believe how well he is doing. These therapists also saw him in the ICU! Bob is able to speak a little over the trach so communication is much easier. He told me he had had a great day. He also said, "When it is easier to speak, I've got a story to tell you!" I'll keep you posted!!!!

Thursday, March 24, 2011

Big Day!

Bob passed the swallowing test and was transferred out of ICU. Five weeks to the day! This certainly was progress and he was satisfied! Hopefully he will be able to sleep better tonight. He is back on the 15th floor of Prentice Hospital, across the street from Northwestern Memorial Hospital. His lungs had improved with the treatments yesterday so they continued with a few more today and again tomorrow. You should have seen how excited he was when he was able to drink some water! For dinner he ate a few spoonfuls of chicken broth, a little red jello (Bob never liked plain jello but it became a favorite when he was there for the transplant) and a teaspoon of chocolate pudding. This was really his first meal in six weeks! You can only imagine how much weight he has lost. Boy will he enjoy those chocolate shakes! I heard about a place close to the hospital that is suppose to have the best shakes. That might be a fun birthday treat. Tomorrow he is eager to get going with the physical therapy. A new day, so much to be thankful forl

Wednesday, March 23, 2011

Slow Day

Many of us would be grateful for a slow day, but not Bob! All day he wanted to know what was next! The plan was a resting day. Bob thinks he has had enough of those kinds of days. He was off the vent for 24 hours and so today, the doctors wanted to see if he could be off it for another 24 hours. They are doing some lung exercises with him to improve lung function and hopefully tomorrow Bob will be able to move back over to Prentice Hospital. Tomorrow could be a big day because they are also going to do the swallowing test. He now has a time for that. Bob really wants to be able to eat so hopefully he passes the test. He wanted me to give him some of my coffee and granola bar this morning. I reminded him that I was a real rule follower so he had to wait! Tonight he wanted his cell phone just in case in needed to call me. He gets a little anxious during the night so we told his nurse it was okay to call at any time. He felt better when I left but said he can't wait until morning. (Me too!)

Tuesday, March 22, 2011

It's A Big Birthday

Next Tuesday, March 29, Bob will be celebrating his 60th birthday. It is a special birthday for MANY reasons. I was thinking that it might be fun for him if all of his blog followers sent him a birthday card. It probably would be best if you sent it to our home because I don't want to overload the Northwestern mail staff!! :) I'd bring them all down there on Tuesday. I don't know if Bob will be enjoying birthday cake on the 29th but I do know that he will love reading all of your birthday wishes.

Today Bob was off the vent all day again and they are going to see if he can be off it tonight too. Tomorrow afternoon they will do a swallowing test. Keep praying.

Monday, March 21, 2011

Each Day More Progress

Bob was able to be off of the vent for 12 hours today! That was the goal that his doctors had set for him and then overnight he will be on the vent to rest his lungs. Communication was easier today because Bob can write. He took notes as the doctor talked about different goals. We are also getting better at lip reading since he enunciates more clearly. We watched The Unsinkable Molly Brown and Mary Tyler Moore on CD's brought from home. We even worked a crossword puzzle together. Bob, the editor, is very good with words! I'm grateful for his help because I'm much better at Sudoku. This afternoon he was lifted to a special chair. While sitting there many of the nurses had to stop by and introduce themselves to Bob. Being in ICU for almost five weeks, I think every nurse has helped him in some way and wants to see his unbelievable progress. Today Bob was also planning his first meal. He actually had a taste for certain foods but he said he would settle for soup! Hopefully they will do a swallowing test tomorrow. His doctor reminded him that each day he is getting stronger and it will be easier to pass the test on the first try. Bob liked that idea!

Sunday, March 20, 2011

Bed Alarm

Bob had another good day today. He was off the vent for around five hours, we listened to an audio book for awhile and we were able to have a good conversation about his progress. (One sided but we both understood what each one was thinking) He still thinks he should be able to get up and walk so when we are not in the room, they put a bed alarm on which has a voice that reminds him to stay in bed. A friend, who is a physical therapist, suggested that if two physical therapists came to the room they could help him get out of bed and then he would be able to see for himself that he needed to exercise his muscles before he takes off and walks on his own. Hopefully this will happen tomorrow. He doesn't remember anything from the last four and a half weeks so the idea of not being able to just get out of bed is hard for him to accept.

When we were ready to leave tonight I knew my Bob was back. He said to us, "Drive carefully!" Thank you God!

Saturday, March 19, 2011

"When Can I Get Out of Here!!!"

Well, today was a great day. Bob's fever was down, he was off the vent for eight hours (weaning) and he wanted to know "When am I going to get out of here!" He seemed to think he should just be able to pop right out of bed. I needed to remind him he had been in bed for a month. He didn't think that should matter! He was moving around lots in his bed. I told him that was good physical therapy! :) He was also concerned about where his clothes were and how we were going to get the stuff moved from his room. There really isn't much in his room and as for his clothes, I told him I'd bring them back A.S.A.P. That made him happy. He wants socks and slippers for tomorrow. (I think he might be planning an escape!) It's great to see his determination and spunk!

Friday, March 18, 2011

Fever

Bob was still bothered with a fever today. It was a little lower than yesterday so maybe tomorrow it will be gone! The fever takes a lot of his energy so he remained on the vent today. He is restless and finds it difficult to find a comfortable position in his bed. He has mouthed very clearly that he just wants to leave this place! Any suggestions for making the day go quicker? He listens to great music on his computer. In fact the nurses have said they like to come into Bob's room because of the great tunes. We watch jeopardy and today I asked him if he would like to listen to a book on CD. He said he would try that so tomorrow morning I will stop at the library. I told him to pray that the fever will leave his body and that they will be able to do the swallowing test on Monday. That would hopefully allow him to have some food. (eating passes the time too) I will also pray for patience for Bob and me.

Thursday, March 17, 2011

Thursday, March 17

When I came today, Bob clapped his hands. He was either very happy to see me or just glad it wasn't a medical person visiting! :) Today Bob needed to be on a small amount of vent support. They think he might have worked too hard yesterday. That would be Bob! The doctors are very encouraged by his progress though. He has been completely awake today and has told me very clearly that he wants to eat! He is even a little cranky when he is mouthing these words! I explained that maybe tomorrow the speech therapist would be able to do the swallowing test. He understood but... He is really moving his arms and legs and even seems stronger than yesterday. He has a little fever again so please pray that the fevers disappear. 101.5 It didn't seem to affect his spirits today though!

Those of you that know me well, know that I love little quotes. In fact, Bob said Anna will learn to read at our house with all the little sayings I have around. Recently we got a card from a friend which included a phrase about hope. "Of all the forces that make for a better world, none is so powerful as hope. If you have hope... you have everything. " I am filled with hope, I guess I have everything. :)

Wednesday, March 16, 2011

Miracles Do Happen

Our family has certainly witnessed a miracle these last two days. Bob has truly experienced the healing arms of our Lord. We are so grateful!

After twenty days of staying at the Double Tree Hotel, about a block from the hospital, I went home to Park Ridge. I knew it was time to go home on Sunday night when I was at the hotel because it was just making me feel so sad. I knew Bob was getting a little better and for me the hotel meant he was still very critical. Not the case on Sunday night. He was making slow but steady progress. So I checked out of the Double Tree on Monday morning, spent the day with Bob, who now was off sedative drips and becoming a bit more awake. I was feeling hopeful as a friend drove me home. It was sad to come home to an empty house but little Wes was there to greet me. Boy was he happy that I was home. I'm even able to write on the blog again!

I got up early Tuesday to head down to the hospital. As I walked into Bob's room, he was sitting up in his bed with his eyes wide open. Immediately I started talking to him. Now he was just on vent support and 40% oxygen. He couldn't talk because of the trach but he did nod and mouth words. This was very emotional for me so naturally I cried. Bob knows I cry easily. Maybe I'm sad, happy, tired, maybe it's a movie, maybe it's music, who knows, but Bob knows I cry easily. Throughout the day Bob interacted with Elizabeth, Sue and me. He laughed when we told some stories, he smiled when we showed him the latest picture of little Anna and he cried when I read the Lenten devotional to him. It had such meaning for all of us. Bob even rolled his eyes and smirked when brother Wylie was telling a few of his stories. The old Bob was back. Tuesday night I got my best night sleep in 21 days! Miracles do happen!

Today I drove to the hospital and when I reached Bob's room his bed was facing the lake and he was sitting in his bed with the end of the bed down like a chair. The TV was on to a morning news show. I thought he looked great the night before but this morning he looked incredible. I asked him if he wanted his glasses and he mouthed "sure"! He communicated by moving his mouth and head, he wanted to try to write, but that is still too difficult, and the speech therapist gave us a sheet with some words and the alphabet but his fine motor isn't strong enough to point out letters. He did mouth "I want food!" The speech therapist evaluated him today and in a couple days she will do a video of his swallowing to make sure he is safe to eat on his own, without the tube in his nose.

Today the vent was off all day! He just had a trach band that gave him a little oxygen. This evening he was sitting in a chair for two hours!!! The doctors are amazed! When I left to go home, they put him back on the vent with just the smallest amount of support so that he could rest over night and be ready for tomorrow! Miracle do happen and we have seen it! Praise God!

Wednesday, March 9, 2011

Progress!

Sorry for the delay in posts! There have been some ups and downs (to be expected) in the last week, but overall, some great progress. Yesterday, Dad opened his eyes up for the first time spontaneously and since then, he has been awake off and on throughout the day. Today, he was able to squeeze my hand on command, although he is still very weak and it is hard for him to get up the strength to move it. As Mom just said, "Today has been a great day of eye contact and hand squeezes!". He tolerated the trach procedure well. They are still having some fluctuation in the amount of oxygen he needs (FiO2), but they believe that is too be expected at this point. He had a CT of his brain to check for stroke which was normal, as well as a 24-hour EEG to check for seizures which was also normal. He is almost off of the Ativan for sedation, and they have also been weaning down the Fentynl. Overall, we are very encouraged about his progress!!

Thursday, March 3, 2011

Trach Today at 1pm

Dad will be getting his trach today at 1pm. They will do it at his bedside. They will increase his sedation, as well as using the paralyzing medication just for the duration of the procedure. He had a mostly uneventful night, although at one time he did become agitated and need a brief increase in his FiO2 (oxygen). Hopefully, with the trach, these agitation episodes will be less frequent. Please keep him in your prayers today.

Wednesday, March 2, 2011

Trachestomy Tomorrow?

Dad has remained about the same the last 2 days. The best thing that is happened is that the fevers overnight have stopped!! Two nights ago, he only spiked to 101.4, and last night he did not spike a temperature at all. He seems much more comfortable when is does not have a temp, so we are happy for this improvement. They cultured him again for the flu and he still came back positive, which was not completely unexpected as the stem cell doctors and infectious disease doctors both said that a stem cell patient with a new immune system may continue to test positive for the flu for up to 4 weeks, even if they are no longer have symptoms. His blood pressure has been stable for the past 2 days and they have not had to use the medication to keep his blood pressure high enough, plus they have been able to use the medication to help take the excess fluid off (a diuretic called Bumex) without him dropping his blood pressure. Yesterday, they were able to take over 3L of fluid off of him, which should definitely be helping his lungs. The biggest problems remain sedation and weaning of the vent. He continues to make progress, however, it is very slow. Yesterday, they were finally able to get him down to 45% FiO2 (oxygen), which is almost to a place where he can be weaned from the vent. However, when they lightened his sedation he became very agitated and started fighting the vent again, which caused him to desat (drop his oxygen levels) and eventually required the vent to be turned all the way back up to 70% FiO2. So, we basically had to start all over with the weaning down to 45% again. This time, they were unable to get him to 45%, and instead have had him hanging out at 50% since last night and all day today. They were hoping that his oxygenation (exchange of oxygen from his lungs to his blood) would have improved more than it has. Because he has been intubated (with the breathing tube down his throat) for almost 2 weeks, the decision was made today to place a trachestomy tomorrow. A trachestomy is a small hole surgically created in the neck to help a person breath. It is often done for patients who are having difficulty weaning off of a ventilator. The hole is not permanent- when it is no longer needed, it can simply be allowed to close up again on it's own. The doctors are hopeful that my Dad will only need it short-term in order to help him wean more comfortably off the vent. Being intubated is very uncomfortable, and unfortunately, every time they try to decrease his sedation and wake him up more, he gets agitated. The doctors are hopeful that he will be more comfortable with the trachestomy and therefore they will be able to lighten up the sedation and wean the ventilator without him getting as agitated. They can do the procedure at the bedside in his room. The bad thing about having a trach and being on a ventilator is that you are unable to talk. If the trach is needed long term, a speech therapist can work with the patient to help them learn how to use a special speaking device for their trach (but we are hopeful Dad will not need it for that long!!). I am attaching a link to the Mayo Clinic website regarding trachestomies for those interested in more information: http://www.mayoclinic.com/health/tracheostomy/MY00261
Occupational therapy has also started working with Dad by making him splints for his arms and legs to prevent foot drop and contractures (shortening of muscles because they are not being used). We want to make sure that he is able to walk on the beach again this summer! He wears a splint on alternating arms and alternating legs for 4 hours at a time each day. Again, thank you for your continued thoughts and prayers. I told Dad that once he is feeling a little better, I am sure that there are many people that would like to come visit. Until then, please keep sending your emails and I will continue to read them to him. He is on a little less sedation and occasionally we see little responses to things like him squeezing his eyes when we are talking to him. I know I was reading him an email from a friend from his old office the other day and he definitely had a few eye squeezes in there. :) I know Dad appreciates all the kind thoughts and well wishes. I can't wait for him to be able to read them all on his blog again.

Monday, February 28, 2011

Dad Update

Yesterday and today have been relatively quiet days. Dad has been very comfortable during the day. They have been able to wean his sedation a little bit, but he still is not yet able to wake up, open his eyes, or really respond to us. During the day, his temperature has been great, but at night he still is spiking these mystery fevers. Luckily, last night they were able to be proactive by holding his motrin and tylenol until he started to spike, which, along with an ice bath, seemed to help. His temperature only got as high as 102, instead of over 104 as it had the previous nights. The doctors are unsure if this is because the antibiotics were discontinued, if it helps to pre-medicate with motrin/tylenol, or if the steroids that were added yesterday are helping to control the fever. Either way, we are happy that his fevers at night seem to be better controlled, as the fever tends to set off issues with oxygen saturation and blood pressure. He still is very sensitive to being turned, but they were able to have him off the medication to keep his blood pressure high enough today as well as give him the diuretic to help get some of the extra fluid off of him. They have left his ventilator setting at an FiO2 of 55% for the last 2 days. This is below a toxic level, and so they have decided to let him rest for a few days before making any more attempts to wean the vent. Overall, he has made some good progress the last 2 days. Please pray he continues to keep up the good work!! Thank you for your continued thoughts and prayers.

Help with Meals

Many of you have expressed a desire to help out with meals and other needs that we have. Currently, we could use some help having meals delivered to the hospital. There is no refrigerator and limited microwave availability, so food than can be delivered hot or does not need to be heated (sandwiches, for example), as well as drinks would be very much appreciated. We have set up a caring calendar for you to sign up for specific dates. Most likely, there will be between 4-6 people eating each day.
Mike and I could also use some help walking our dog during the day in Forest Park, while I spend time at the hospital and Mike is at work. This errand is also listed on the caring calendar. If you are able to sign up to help walk our dog Daisy, please contact me for additional details.
In the future, there may be spots available on the calendar for rides to and from Park Ridge for my mom as well.
To access the calendar, go to the following website: http://www.carecalendar.org/index.php.
Calendar ID: 67413
Security Code: 4845

As our needs change, we will definitely keep the blog and calendar updated. Thanks so much for all of your care and concern for us during this difficult time.

Saturday, February 26, 2011

More of the Same

Not much new today to report. They were able to wean off the nitric oxide last night, but because of that had to increase his FiO2 to 75%. According to the doctors, they were happy to at least be able to get the nitric oxide off because that can be more difficult to wean off than Dilaudid. So we will count that as a positive thing for the day, even though they had to go up on the FiO2 to come off of it. Dad is still spiking super high fevers every night (104.9 was last night), and they are unsure of the source as all of his cultures have come back negative. At this point, they are considering that perhaps it is a side effect of some of the antibiotics he has been getting, so they are going to try stopping antibiotics for a few days and see if that helps the fevers. When Mike and I left tonight he was up to 103.6 again after remaining afebrile for most of the day. Unfortunately, he also had some blood in his stomach today so they are not able to give him ibuprofen to help with the fevers anymore. All day today his blood pressure was quite low and dependent on the medication to increase it; however, tonight he became quite agitated after being laid flat for a CT scan and became more hypertensive, so they stopped the pressor and restarted the propofol to help with the agitation/sedation. At this point, we know he gives his night nurses a run for their money, and they are used to it as well! His nurse tonight was going to give him a bath in rubbing alcohol and ice water- a very old school technique for lowering fevers. Hopefully it works. I was lucky enough to have one of my former DePaul teachers come to visit with me for a good part of the day, which was very nice. Andrew is also back in town, and it is great to have him here. I know Dad appreciates that as well! Our cousin John brought a delicious homemade meal to the hospital, which was so wonderful. I, for one, am growing very tired of eating out all the time! Dad's oncologist will stop by to see him tomorrow- he is happy that he is holding his own, but concerned that he is not getting better faster, which is the general consensus among the other doctors as well. They feel if they can find a way to control these fevers, it will help his oxygenation. Please continue to keep us in your thought and prayers. We hope that Dad will be back to write on the blog soon, but until then, I will continue to keep updating.