Monday, December 29, 2008

Comments, Anyone?

Several have asked how to post comments - just click on the word "comments" at the bottom of each post, and you will be taken to a screen where you can leave your comments.  Thanks for asking!

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.

Thursday, December 25, 2008

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!

Friday, December 19, 2008

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.

Tuesday, December 16, 2008

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.

Sunday, December 14, 2008


"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!

Saturday, December 13, 2008

No news 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.

Sunday, December 7, 2008

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.

Saturday, December 6, 2008

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!

Thursday, December 4, 2008

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!

Tuesday, December 2, 2008

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.