The Grill Master and his brother

Sunday evening we had a little cookout at Mom and Dad's to celebrate Father's Day. Since it was Dad's day, he decided that he was going to cook. So, he just scooted himself up to the grill and had at it.

Overall, I think Dad had a pretty good day. He was able to spend quite a bit of time outside and enjoyed having everyone around. Dad has definitely been more stable. Having Hospice has really helped Dad to develop a better maintenance plan rather than always operating in crisis mode. He is now able to stay consistently better hydrated and this helps in so many ways. Before, Dad would go to the doctor's office after he had become dehydrated and by then his body was so weak and worn out that it would take him several days to recover. Hospice is now working with Dad to prevent these "bottoming out" episodes and prevent the dehydration. Not only does Dad feel better physically, but it also helps him to have a more positive outlook.

After dinner granddaughter Elana decided she wanted to learn to ride a 2 wheeler bike. Always a sucker for the kids, Uncle Larry obliged. First, the tires had to be pumped up. And then they were off.....
And the next thing we knew, they were in the weeds!

I probably should have been checking to be sure everyone was OK rather than standing back and snapping picture. Always room for improvement I guess! (actually Elana was still giggling, so I wasn't too worried)

All in all, it was just the kind of day Dad wanted - pretty laid back, family around, flowers blooming, and a good nap in the chair!

Thanks for your continued prayers and encouragement. Mom and Dad cherish them so much!

Back Home

Yesterday evening Dad was released from the hospital and is back home. The hospital doctor spoke with the Hospice doctor and it was decided that Hospice could administer everything at home that Dad was receiving in the hospital. His IV fluids have been increased and Hospice can give Dad the shot that slows down his output. Dad's output did slow considerably in the hospital even before he received that shot. So, we are determining that dehydration also causes extra output and by increasing his IVs at home we can hopefully slow down these high output episodes that have been requiring hospitalization to get under control. Hospice will also use the shots as needed to try to keep the input/output balanced. Please continue to pray as we are making decisions regarding Dad's treatment.

Who's on First?

After spending 10 hours in the ER last night, Dad was admitted to Lakeland. Yesterday, Mom called Dad's GI doctor to let him know that Dad had been having very high output for several days. The GI doctor told Mom that Dad needed to be admitted to the hospital to get the output under control and the best way to do that was through the ER. (if that is the best way, I'd hate to see the worst way) At this point, no doctors have even been assigned to Dad. He is simply in the hospital receiving IV fluids - which he does need. But, the whole point of him being there is to get the shots that slow down the output. Mom was going to call the GI doctors office direct this morning since they don't even have Dad scheduled for a GI consult today. So, while we appreciate the team of doctors that have worked very diligently with Dad, sometimes it becomes a bit of a maze trying to figure out who's on first. Mom is exhausted. It was 5:30am this morning before they got Dad settled in his room. And now she has to try to track down doctors to figure out who is supposed to be taking charge of Dad's care. The last few days have been pretty hard on Dad (Mom too). Dad is pretty frustrated and just wants somebody to do something. Right now, he is simply asking everyone to PRAY. We believe in God's plan, we are relying on HIS timing, but it sure is a bit exhausting and frustrating in the process. Dad is very much comforted by knowing that many are praying for him. Thanks!

Please Pray

Dad is on his way back to the hospital and has asked for everyone's prayers. More updates later.

There's the bad news and then there's the good news

For the bad news, Dad has not really had any improvement in the last week. He continues to have very low blood pressure and had to go in for IVs four days this week. Making the trip to the doctor's office really is getting hard on Dad. The Dr. has been trying to find a way for him to get home infusions. Insurance won't cover it and even though Mom and Dad were willing to pay out of pocket, every agency they tried refused to administer the IVs due to liability concerns. At the doctor's urging, Mom contacted Hospice this week. We have been a little hesitant to consider Hospice since our only experience with Hospice had been the end of life care for our grandparents. We had wonderful experiences with Hospice, but weren't ready to give up on Dad's treatments. But, as we have now learned, Hospice has changed quite a bit over the last few years and now offers much more than end of life care. As a family, we met with the Hospice nurse today and she explained all the various services that they can not only offer Dad, but also offer the family. Dad will be allowed to continue his treatments. And, they can give Dad his IV infusions at home! What a huge answer to prayer! (did I mention HUGE answer to prayer). We are so very thankful for all the assistance they are going to be able to offer Mom and Dad. This is going to be such a tremendous help for both of them. (did I mention HUGE answer to prayer!) They even had an aide come out right away to give Dad a bath. They will also be able to provide most of Dad's medicines at no cost. Mom and Dad do not have prescription insurance, so that will be a big help. This all is the good news by the way! They also told us that if Mom just needs to get out for a few hours, all we have to do is let them know ahead of time and they will schedule someone to come stay with Dad. Mom needs the peace of mind of knowing that Dad has skilled care with him while she is away. We are going to insist that she take advantage of this! Dad has been worried about Mom, as we all have. So, he was very ageeable to having Hospice when he understood what a huge help it would be to Mom. The rather funny part about the meeting we had with the Hospice nurse was when the nurse asked Dad what his opinion was about the services she had explained. Dad said he really didn't have an opinion (since when?!) and wanted us (Mom and the 3 kids) to agree and decide. Once we all overwhelmingly agreed (and almost gave that poor Hospice lady a group hug), he was very comfortable with our decision and, I think, almost relieved. He doesn't want to be a burden to Mom. But, he knows that he needs a lot of care right now.

The other bit of news is that Dad's local Dr. had been consulting with Dad's Dr. at Mayos and they are in agreement that Dad needs to try an alternative treatment for his amyloidosis. The low blood pressure is caused by the amyloidosis and the blood pressure meds are not effectively keeping his blood pressure elevated to healthy levels. So, they need to more aggressively treat the amyloidosis. We are in agreement that other options need to be pursued at this point. The problem is that the alternative medication is jaw dropping expensive. I can't imagine how a few little pills can cost that much money! So, the Dr. has applied for a patient assistance program for Dad. The application process is very involved and quite lengthy. It could be weeks before we find out if Dad is approved to receive the meds under the patient assistance program. The alternative medication does come with some risks. We are aware of those risks, but still feel it is an option we need to pursue. Please pray with us that if this is the course of treatment that Dad should take that the patient assistance will be granted.

It just hasn't been the best week

Dad continued to get weaker as the week went on. Today, he collapsed in the parking lot at the doctor's office. His blood pressure was very low this morning when the home nurse was at the house and she sent him to the doctor for IVs. Fortunately, the nurse told Mom that she could not take Dad alone and Uncle Larry went with them. When Dad collapsed, Uncle Larry was right there to catch him so he was not hurt. But, it was still very upsetting for everyone. Dad was taken by ambulance to the ER at Lakeland. He received IVs and was given the option to be admitted for more fluids or to go home. Dad chose to go home. Personally, I would have preferred that he stayed at the hospital for a day or two to try to rebuild some of his strength. Due to Dad's weakness, it is very hard for Mom to handle him by herself at home. But, Dad is more comfortable at home and feels that he gets better rest at home. We, however, are concerned for his safety at home. We are also very concerned for Mom at this point. She simply cannot continue to go at this pace. Please pray with us that Mom and Dad will make wise decisions regarding Dad's care. Please also pray that the doctors will have wisdom in treating this blood pressure issue.

Just OK

Dad is doing OK. Not great, but OK. He continues to struggle with his blood pressure and as a result has had to make frequent trips to his Dr. to receive fluids by IV. We are grateful that at this time he is able to remain at home, but we also know that can change at any time. Dad just doesn't quite have the energy he did a few weeks ago. He is sleeping quite a bit and is also losing weight. When he sleeps a lot he often does not get the fluid or food intake that he should. He is trying to walk on a regular basis to keep his strength up, but it is difficult for him. Intellectually, we all know that we can expect Dad to have periodic set-backs. That is simply part of a chronic illness. However, it doesn't make it any easier. It is still difficult to see your Dad struggle just to get up in the morning. Things we all took for granted just a short year ago.

Please pray for Dad that he will be encouraged and for Mom as she cares for him. Mom is getting pretty worn out. She wants to be with Dad all the time, but she also knows she needs to take a break every now and then. Although it is hard for her to be away from Dad.