Saturday, June 13, 2009

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.

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