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Dad has been on the go.  He has enjoyed several short trips out to restaurants, church, etc.  He gets tired easily, but it is so good to see him wanting to go and do things.  I do have pictures from Christmas, but haven't had a chance to download the photos to my computer.  Dad has an appointment with his doctor this week to check blood levels, discuss his next round of chemo, etc.  I'll post an update with photos in the next day or two.

Cinnamon Rolls!

Well he did it .... Sunday after church Dad had hot fresh cinnamon rolls ready for us.

I'm not sure who enjoyed them more - Dad or the grandkids. Dad is doing very well. He has not been back to the doctor or hospital for IVs since he left the hospital on December 15. He is able to eat and drink enough to stay hydrated. Now, we have to work on getting a few more pounds on him. Dad is still quite thin and weak. But, he continues to work hard in physical therapy to improve his strength and mobility. While Dad was in the hospital, a test was performed to measure the effectiveness of the chemo in treating his disease. The test showed a decrease in the amyloidosis ratio. The explanation of the results was a bit technical for all of us, but the doctor was pleased and said Dad is moving in the right direction. We continue to be encouraged by Dad's slow and steady progres.

Thanks for all your prayers and visits! You all mean so much to Mom and Dad! We will all be together at Mom and Dad's Christmas Day and I'm sure we'll have more pictures to post. Merry Christmas!

Deck the Halls

Yesterday, the grandkids had a pizza/decorate the Christmas tree party at Nana & Papa's. Mom and Dad really enjoyed having every one there. Here's the gang...

Dad continues to do quite well this week. He has not had an IV since Sunday afternoon. His blood pressue is holding pretty steady, he is eating well and drinking adequate fluids. He continues to work on standing on his own and walking with the walker. After I had taken several pictures yesterday, Dad wanted to see them on the LCD screen of the camera. When he saw the pictures of himself, he said "hey, I look good there!" He is looking so much better. We continue to be pleased with his daily progress. Dad said he wants to make cinnamon rolls for the kids this weekend. He is sure he can just roll his wheelchair into the kitchen and whip them right up. We're all looking forward to his cinnamon rolls!

Here are a few more photos from yesterday...

Dad realized he didn't have his glasses on in the first few photos I took and wanted to be sure I got some of him wearing his new glasses.




The girls decorating the tree.

Nathanael and Papa are discussing their next woodworking project.

Thanks for your continued prayers and visits. Mom and Dad appreciate them so much. Please pray also for Mom as she is coming down with some sort of a cold and is getting pretty run down. The last several months have been pretty rough on her and we are concerned about her health as well.

Settling In

Mom & Dad with the Grandkiddos - August, 2007 when they celebrated Papa's 60th birthday.

Mom and Dad are still trying to settle in to a new routine at home. This has been challenging for both of them. When Dad originally went to the ER back in October, he was pretty much able to care for himself, walk with his cane and be pretty independent. Now, he needs assistance with pretty much everything he does. Since Dad has spent most of the last 10 weeks in the hospital, he and Mom have not had to really "go it alone" at home for any period of time. Dad wants to be independent and do things for himself, but he is quite limited in what he can do. That makes Mom the primary care giver. Dad has also been on IVs most of the last 10 weeks to give his body the fluids, medicines and in some cases nutrition it needs. Dad was sent home without any IVs. He will need to monitor himself to be sure he is taking in what his body needs. Dad is improving and getting stronger each day. We are all very happy with his progress. But he and Mom both have big jobs ahead of them! Please continue to pray for Mom and Dad as they try to support each other and care for each other in their own ways.

"Tomorrow"

"Tomorrow" is finally today! Dad is home. He was able to come home this afternoon and he and Mom couldn't be happier to finally be home together. The next couple of days will involve trying to establish a routine and a new "normal". A home health care nurse will be stopping by in the mornings. Mom is going to try to determine a good time each afternoon for a rest time for Dad. This will allow her to catch up on bookwork and household chores while Dad gets some uninterrupted sleep time. Mom and Dad will love to have visitors. Evenings or around lunch time will probably be the best times. I will keep you posted as they settle into their routine and let you know what their daily schedule is likely to be.

Thanks so much for your prayers. Dad still has a long road ahead of him to regain his strength. The doctor at the hospital was very open and honest with Mom and Dad. He explained that with a chronic illness such as Dad's, there will be periodic stays in the hospital. Complications will happen. We should not be surprised by that, but work through them. We have all really appreciated the hospital staff doctors at Lakeland. Dr. Dave and Dr. Sam - Thank You! We appreciate your care, your honesty and professionalism. Dad has also had wonderful nurses. Several of them have become part of our family over the past few weeks. They knew what Dad needed when he needed it and they were there - for all of us. Thank You!

No news is....no news

Really nothing new to report. Dad is still hanging out in the hospital. He has been moved back to "his" room on the 4th floor. The doctors have decided to try to slowly introduce food again. Originally we were told that Dad would be on TPN for the forseeable future. However, there are health risks associated with long-term TPN use and when the doctors all conferred, they thought it best to try food again once Dad's digestive system had a chance to rest. So, Dad is being monitored to see how his system responds. Right now, he is on a soft food diet and so far has tolerated it well. They are also trying a dairy-free diet to see if that makes any difference. He has been able to keep his input ahead of his output and that is what the doctors need to see.

Dad did have a couple days this week where his blood pressure was a little too low, but nothing that wasn't able to be corrected by increasing fluid intake. The doctors are telling Dad that he will be able to go home "tomorrow". But that has been said for the last few days now. So, we'll see what "tomorrow" brings.

Overall, Dad has made such great progress since his surgery last month. It is good to hear the doctors using the word "recovery" instead of simply trying to stop a downward spiral. We are all encouraged that Dad continues to make slow but steady progress. His physical therapy is going very well. He was able to take about a dozen steps yesterday. That is remarkable improvement. Dad is frustrated that he can't do more. But he has come so far. I still don't think he knows just how sick he was. We are grateful for each day. Thanks for your prayers, visits and notes of encouragement. Mom and Dad both appreciate all of you so much. This has been a long and hard journey for both of them. Your encouragement keeps them going every day.

One Step Back

Well, Dad likes to keep everyone on their toes. He managed to get himself put back in progressive care. Yesterday morning when he took his chemo, he started to get really sick. He was given a shot to deal with the nausea. (he takes his chemo orally, so they did not want him to throw it all back up) The shot made him very sleepy and he slept most of the day. Throughout the day, his blood pressure was steadily going down. By yesterday evening, the doctors had decided that he needed to be moved to progressive care where they could more closely monitor his blood pressure. We really appreciate the hospital doctors at Lakeland. They have been very "on the ball" with Dad's care. They address issues quickly without allowing them to progress to the point where they become critical. Dad will likely be moved back to a regular room when his blood pressure is stable.

The doctors have also decided that Dad will not be allowed to eat any food for now. He will get his nutrition from TPN. They think that amyloid presence in his GI tract is interfering with absorption and causing an increase in the output in his bag. The increased output is what causes the dehydration and blood pressure drop. Keeping Dad's fluids in balance was very difficult because his output would vary so much from day to day. So, they are giving his GI tract a rest and will likely not allow him to eat food until the amyloidosis is more controlled. He will be able to get TPN when he goes home.

Dad is pretty tired today and his color is not as good as it has been. He will need a lot of rest today. On Wednesday, Dad has an appointment with his hematologist to discuss the treatment for his amyloidosis. Please pray for this appointment that the doctor will have wisdom as to what is the best way to treat this disease. Because the disease is so rare, the treatment is a little bit of trial and error. Controlling the amyloidosis is key to addressing these other issues.

Can You See Me Now?

Dad had a really good day yesterday. He got a new pair of glasses! It's a whole new world for him. For the past two months, he has not been able to wear his contacts and he did not have a regular pair of glasses. So, Bud Steinhoff made him a pair of glasses and delivered them right to the hospital. (Thank You, Bud!)

Dad is making really good progress. Even though he does not like being in the hospital, even he admitted that this past week has been really good. He is getting stronger every day. His vitals are remaining at good levels. He is awake and sitting up most of the day, reading the newspaper, visiting with company, talking about what his next goal is for his physical therapy, etc. It is good to see him making positive strides both physically and emotionally.

The plan is still for him to come home on Monday if his chemo continues to go well the next couple of days. He will be set up with an IV for fluids and TPN feeding at home. Hopefully that will help him stay hydrated to we don't have to bring him to the ER every couple of days. We are still waiting on some test results that will give us an idea of the effectiveness of the chemo. We are anxious to get those results and then be able to discuss our short term and long term treatment plans with Dad's hematologist.

Thanks for your prayers and visits!

Staying Put...for now

Dad will be staying in the hospital until Monday. As of right now, he is scheduled to start his next series of chemo treatments tomorrw. He will take four days of chemo and then go home on Monday if all goes well. The doctors decided that it was best to give him his chemo in the hospital this time since he is still pretty weak and had major surgery three weeks ago. He isn't very happy to be staying in the hospital, but he is anxious to take his next round of chemo. So, it that's what it takes to get the chemo, then we're all for him staying put...for now.

Thanks for all your visits and prayers. Dad has enjoyed lots of visitors this week. Thanks so much for helping him get through all this!

More of the Same

Not much has changed. Dad did have a scope today which showed that the lower part of his small intestine is lookin' good. The GI doctor has given his GI tract a thumbs up. The main GI issue continues to be controlling his output.

Dad has also had some additional blood work done trying to pinpoint a cause for the frequent drops in his hemoglobin levels. So far, the blood work has come back normal. As of today, his hemoglobin is starting to come up on its own.

So, we really don't know what the next step is. Dad's vitals are all good. We're still not sure when he will be able to start his next round of chemo. We aren't sure when Dad will be able to go home. Dad has been approved to receive IV infusions through home health care when he does go home. That will help with the dehydration issue.

Dad is getting discouraged. He just feels like he can't make any progress. He does enjoy company and appreciates all your visits.

Please pray that the doctors will have wisdom as to what to do next. Also pray that Dad can resume his chemo soon. That is key to fighting the amyloidosis which is causing all these other complications.

Passin' Time

Well, Dad is passin' time in the hospital again. He will likely be there until at least Tuesday. It has become evident that Dad needs IVs on a regular basis or he will going to the ER every day or two. So, Dad's staff physician is working with Dad's other doctors to coordinate home health care which will allow Dad to get IV infusions at home as needed. Otherwise, he just dehydrates so fast. Dad will have to remain in the hospital until the home health care is all lined up.

The GI doctor on call is a little concerned about Dad's frequent drops in hemoglobin levels. He will be discussing with Dad's regular GI doctor the possibility of some additional testing to see if they can find a cause for this. We should know more about this in the next day or two.

Dad is scheduled to start another round of chemo on Thursday. As of right now, it looks like that may be postponed until next week.

Dad's vitals have all stabilized and he looks good. He is eating well and has regained some of his strength. Hopefully, being able to have IVs at home will help him stay hydrated and eliminate some of the hospital time. Dad has only been home for about 10 days out of the last two months. He is really tired of hospitals!

Thanks for all your prayers!

It's Been A Long Day

We've had a couple of long days. Let me back up to Wednesday and get you all caught up. Tuesday evening the doctor told Dad that he would be released from the hospital on Wednesday. We expected that he would have PT in the morning and then be able to go home after that. Wednesday morning a lot of routine tests and bloodwork were done. The bloodwork showed that Dad's potassium and magnesium levels were low. So the doctor ordered potassium and magnesium infusions via Dad's IV port. What we didn't know was that he ordered several bags that had to be given one at a time. When Dad was finally released, it was 11pm Wednesday night. Dad was glad to be home, but it was a little bit of a tough night. Dad needs a lot of care during the night.

Thursday, Thanksgiving, was a good day for Dad. His goal was to have Thanksgiving dinner at Andi's house. He was able to do that and really enjoyed getting out and seeing people that weren't wearing white coats. A long, but good day.

Dad did not have a good night Thursday night. He began losing a lot of fluid through his bag. His blood pressure began dropping and he slept most of the day on Friday which meant he was not taking in the fluids his body needs. Due to the loss of his colon, he needs to take in extra fluids. By Friday evening, his color did not look good and his blood pressure continued to be low. A call to the doctor was made and we were given the direction we expected, but did not want. Back to the hospital.

Dad went in through the ER and they immediately started IVs since he was becoming quite dehydrated. The decision was also made to do a blood transfusion since his hemoglobin had dropped 2 points since Monday. Dad was admitted last night. Our favorite staff physician, Dr. Dave, saw Dad come in and let the ER staff know that he was very familiar with Dad's situation and he wanted Dad assigned to him once he got up on the floor.

Needless to say, Mom is getting pretty worn out. Dad only sleeps 45 min to an hour at a time and needs help all throughout the night. Mom is a trooper, but everything is wearing on her. Please pray that the doctors will be able to get his output controlled so he won't be losing as much fluid and his vitals can stabilize.

Mom and Dad are so grateful for all your prayers. They have been overwhelmed with your offers of help. We are all thankful for all of you! Thanks for being there for Mom and Dad. They do need a lot of help right now and we couldn't get through this without all of you.

"One More Day"

We have come to understand that "one more day" is a medical term that really means "we don't have any idea when you are going to be able to go home". For the past week, the doctors keep telling dad that he will be able to go home in "one more day". And "one more day" turns into "one more day". Dad is beginning to feel like a hamster - expelling a whole lot of energy to get nowhere.

Dad's vitals are all good. He is able to eat whatever he wants. But, his hemoglobin continues to be a little too low. He did get a blood transfusion last night. The doctors want to see the hemoglobin sustained at a healthy level before he is able to go home. What we don't know is what is a healthy level for an individual with amyloidosis. Dad has a very rare disease and he will probably not be able to attain the textbook perfect levels the doctors are looking for. So, at what point is good enough good enough? At what point can we get back to treating his amyloidosis? These are all questions we will be asking the doctors. Please pray that we will ask the right questions and the doctors will have wisdom.

Dad is getting a little stir crazy and does enjoy company. Thanks for all your prayers and all you do for us!

One Day at a Time

Dad continues to slowly improve. He has been moved to a standard hospital room on the 4th floor. He can now eat anything he wants. For his first "real" meal - a Whopper with french fries. When the nurse reminded him that he still needed to eat healthy food, he decided to add a salad to that. His body seems to be processing the food well.

One complication of amyloidosis is that the body does not completely absorb the nutrients from food and fluids. So, Dad will have to be monitored for this and may need some supplemental nutrition along the way.

Dad is getting a little discouraged in that he feels like he is now in a holding pattern waiting for the doctors to agree on when he can go home. And, of course, they all have differing opionions. I think Dad is willing to pay off the first one that will sign the papers to let him go home. He is tired of hospitals and ready to be in his own environment. As a family, we want him to be physically strong enough to go home. But, at a certain point, we need to be aware of the negative physical consequences of becoming emotionally discouraged.

Please pray that the doctors will use good discernment in balancing Dad's physical needs along with his emotional needs. We want him strong and healthy physically and emotionally.

Slow but Steady

Dad continues to make slow but steady improvements. He has been moved to progessive care and continues to get daily physical therapy. His diet is slowly being progressed to included more foods. Yesterday he said he really wanted Good N Plenties. So, Mom and Elana (youngest granddaughter) went shopping. They couldn't find Good N Plenties, but did find Chuckles. The Dr. said if that sounded good to let him have it. Dad enjoyed every bite of it!

We continue to be encouraged by Dad's progress. He is beginning to get a little stir crazy though. He is starting to feel good enough that he doesn't want to be sitting around in a hospital room all the time. However, he still needs to be monitored closely until all his numbers stabilize and he is able to maintain healthy vitals without IVs, TPN feedings, etc. So, it will be interesting! He keeps trying to come up with an exit strategy. But, he still isn't walking too good, so he won't get too far! Please pray that he will have patience to let his body heal and that we will have patience with him!

Ups and Downs

Dad will remain in CCU for now. His hemoglobin and blood pressure have both dropped again. He is receiving blood and may undergo some testing later today to see if they can find out why this continues to be a problem.

Dad needs a lot of rest right now. He is always tired during and after blood transfusions and the staff is also working with him quite a bit to teach him the necessary things he will need to do to be able to care for himself at home.

The CCU staff has implemented a no visitor policy for Dad. Between frequent visitors and the staff needing to work with Dad, he simply is not getting rest. Mom still loves company and would enjoy visiting in the CCU waiting room or going for a cup of coffee, but please do not go down to Dad's room. When he is able to receive visitors in the future, please be respectful of the CCU rules. When the staff pulls the curtain, they are working with a patient and do not permit anyone else in the room. This is out of respect for the patient's privacy as well as giving the staff the space they need to do their job. We are so very grateful for the wonderful CCU staff, but do want to stay on their good side by being respectful of the hospital protocol.

Please pray with us that the Doctors will be able to find the cause of Dad's frequent drop in hemoglobin and blood pressure.

Day of Rest

Dad continues to improve. Yesterday, the CCU Dr. decided to keep Dad in CCU one more day so he could have a day to rest. He was pretty tired from a busy Saturday. The surgeon is very pleased with how Dad is healing and his digestive system appears to be functioning properly. Dad was moved to a full liquid diet which means he can have soups, ice cream, yogurt, etc. I expect that Dad will be moved to a standard hospital room today.

One Step Back, Two Steps Forward

Dad is keeping everyone on their toes. This morning, he had some bleeding and it was enough that the surgeon on call was concerned. Dad's blood pressure and hemoglobin dropped. So, an endoscopy was ordered to be sure nothing further up the GI tract was causing the bleeding. The scope went well. A few ulcers were found that are probably a recent development. They will be treated with medication, but the Dr. indicated that they are not a major concern at this time. No bleeding was evident during the scope so the Dr. is unsure of the source of the bleeding. It could have been from the ulcers, leftover blood from the surgery, etc. The Dr. was pleased with the condition of the GI tract overall. In fact, he said he felt better about Dad's case after doing the scope than he did reading the chart before the procedure.

Because of the bleeding, low blood pressure and hemoglobin, Dad continues to be monitored in CCU. He received two units of blood and that has brought his blood pressure back up to a healthy level. When I left this evening, he had not yet had a blood draw, so I'm not sure what the hemoglobin levels are. The surgeon was pleased with the scope results and has allowed Dad to start a clear liquid diet. Dad was one happy camper. His first request - chicken broth. Mmmmm. Dad is looking like himself again and sounding like himself. His voice is getting stronger and he is getting bossy! I was walking down the hallway after lunch or dinner (not sure what you call the meal you eat at 3pm) with my mom and I could see Dad in his room at the end of the hallway. He was sitting up in bed watching a football game just looking like Dad.

Thanks for your prayers! Please continue to pray that Dad will get stronger, continue to heal and not have any further complications.

Baby Steps

Overall, Dad had a pretty good day today. He was quite busy. He had physical therapy, occupational therapy, numerous Dr. visits and Mom nagging (lovingly, of course) him to remember to do his exercises. He even walked with a walker to the door and back. That was a pretty big accomplishment. Due to the neuropathy and weeks of immobility, Dad is basically having to learn to walk again. One step at a time. His voice is getting stronger and he is beginning to sound like himself again. Which, of course, means that he has no trouble expressing his opinions. Sometimes, we just pretend we can't hear him.

The Doctors are all encouraged by Dad's progress. This time last week, I could have never imagined Dad could progess to where he is today. We continue to be very grateful for the caring group of doctors we have. This past Monday, Dad had a scheduled apt. with his GI Dr. As soon as the Dr. saw Dad, he knew something was not right and he put him back in the hospital. At the hospital, a routine X-ray used to check the placement of the pick line showed the first hint that something may not be right in Dad's bowel. A CT scan verified that there was a perforation and that led to the emergency surgery on Tuesday. Tonight, when Dr. Dave came in to see Dad, he thought his skin color looked a little too red. So, he consulted with other doctors and they decided to take Dad off his antibiotics in case he was beginning to have an allergic reaction. We are blessed to have doctors that know Dad well enough that they can tell if something isn't right just by looking at him and address it before it becomes a bigger issue. Dad has remained in the CCU unit not because his case is still considered critical, but because there are no other beds in the hospital. He's just fine with that. He enjoys his private corner suite in CCU. However, they are planning to move him to the 4th floor later tonight or tomorrow morning.

Dad did reach one more milestone today - ice chips! He was so glad to be able to put something in his mouth. As soon as they hear a little more rumbly in his tumbly he should be able to progress to a liquid diet. Dad's blood pressure remains excellent without any meds. He's even gaining a little weight on his TPN feedings. (Prior to surgery, Dad checked in with a fighting weight of a whopping 115 lbs. So, we'll take any weight gain.)

Dad's looking forward to Thanksgiving dinner. I think that goal is looking pretty good!

We appreciate all your prayers. Please pray that Dad continues to progress and his body will be able to retain fluids and food as they are introduced.

Two Steps Forward

Dad looks great today! Nathanael, his favorite (and only) grandson was able to see him for a few minutes today, and he said, "Wow! Papa looks excellent!" And compared to the last few weeks, he does look really good.

They have removed Dad's direct line from his neck and are preparing to move him to a regular hospital room. We are grateful that Dr. Dave has once again been assigned as Dad's staff physician. Dr. Dave has been with us since Dad was admitted to the hospital on Oct. 5. Dr. Dave knows Dad's case very well and he is very thorough. We really appreciate Dr. Dave. He works well with Dad and is firm yet caring. Dad still cannot have anything by mouth. Hopefully, soon the Dr. will allow him some clear liquids. Dad so badly wants something to drink. Today, the doctors informed us that Dad's platelet count had dropped. The Dr. thinks it may be a reaction to an antiobiotic Dad is taking. As I understand it, there is a 1% chance of this happening with this particular drug. Of course, Dad had to be the statistic. They have stopped that medication and the doctors aren't too concerned about that issue right now. It is something that will be monitored.

Dad was sitting up in a chair most of the morning. By the time I saw him early this afternoon, he was wiped out. He was going to try to get a nap in before they came to move him to a different room.

We continue to be encouraged by Dad's progess. I think he's pretty proud of himself too. Please pray with us that his digestive system will start to work properly (it tends to take a little vacation after the type of surgery Dad had and can take a few days to get going again), and that his body will be able to properly process fluids and foods. Over the last several weeks, Dad has become severely malnourished. And it is very critical that his body is able to retain nutrition so he can begin to regain his strength.

Thanks for your prayers, calls and offers of help. We appreciate all of you. Dad still needs a lot of rest. Please give us a call before visiting. While Dad can only have visitors a few minutes at a time, the rest of us love company!

Sweet Dreams

I just got back from seeing Dad again this evening. He is still in CCU and is doing quite well, all things considered. The CCU staff is very pleased with his progress. He is back on TPN feedings which gives his body the nutrition it desperately needs. His blood pressure is good and he is no longer on medication to raise his blood pressure. He is not allowed to have any fluids yet. Just a little swab occasionally. He has developed some bed sores which have become a nuisance and are causing quite a bit of discomfort. The staff is very good at keeping him propped on his side so those sores will have a chance to heal. Just before I got there today, he had been sitting in a chair for about an hour. We are praying that the procedure he had yesterday to remove a portion of his colon will help to resolve the diarrhea issue.

Dad was able to complete his November cycle of chemotherapy before he was hospitalized on Monday. His next scheduled chemo cycle is in 3 weeks. Please pray that he will have regained enough strength to continue with the scheduled chemo as this is what controls his amyloidosis.

As a family, we have watched Dad's condition slide rather rapidly over the last several weeks. We talked this past weekend and had decided that a major decision would need to be made this week. We didn't know what that decision would be, but we knew that we were going to have to do something. God intervened and that decision was made for us. Tonight before we left the hospital, Dad said that he is encouraged by his own progress. That was so good to hear as the last several weeks have been very discouraging for all of us, but for Dad in particular. He could feel his condition getting worse and worse and he felt powerless to do anything to change his direction. After we talked a few minutes, Dad started to drift off to sleep. We said, "Sweet dreams." He smiled and went peacefully to sleep. Although he did open his eyes briefly to check what time it was. He wanted to be sure it was bed time. He's got a schedule to keep, you know.

Dad needs a lot of rest right now. The CCU staff is limiting his visitors. Please check with family before going to visit to be sure the staff is permitting visitors. We love the company, but ask that if you do visit that your time with Dad is kept very brief. Family is often in the CCU waiting room and you're welcome to pull up a chair, get a cup of coffee and visit with us as long as you like. We don't mind chocolate either :-)

Thanks for your love and support. We ask that you pray with us for Dad's continued improvement and that no further complications will develop.

Sweet Dreams!

The Day After

Dad had emergency surgery yesterday evening for a perforated colon. The surgery went well and he is recovering in CCU. I saw him this morning. He is alert, has good color and is a little irritated with all the tubes and monitors. He is getting excellent care and we are grateful for the CCU staff. Mom's doing well also. A little tired, but still a trooper. More detailed updates to follow.

Thanks for your prayers and outpouring of support!