Totally Unexpected

Mom has been home for almost a week now (Tuesday will be a week), and we are settling in a bit. Her first few days had some challenges and getting her set up with needed supplies and meeting the nurses and hospice staff was a bit of a process...but by Thursday, we had a pretty good day with mom awake and alert and eating a small bit...it was very encouraging.

Then I go over on Friday and dad told me that mom had been bleeding a bit and to make a long story shorter, I quickly began to expect a GI Bleed (a bleed somewhere in her digestional tract)...that was confirmed by the nurse in the late afternoon.

We don't know where exactly, could be stomach or intestines, but most likely stomach and most likely because of the steroid she has been on for 2 months now. It is a known side effect so they have had her on a pepcid pill all along.

Normally, in a healthy person with a GI bleed, they would identify the location and surgically repair it, but mom is not a healthy person right now. Our only option would be to hospitalize her for blood transfusions but that would do nothing for the bleeding. So, we opted to keep her comfortable at home.

The bleeding comes and goes and stopped entirely for the entire day on Saturday but is back today (Sunday). The bleeding itself is painless, but mom is having pretty severe abdominal cramping with it, so we have her on a very low dose of morphine and a medicine for cramping and one for relaxing.

It could completely stop permanently OR it could get significantly worse if her body loses the ability to clot. So, we took her off her daily asprin that she has been on for a week to help prevent any more strokes. We also put her on an additional stomach med. We will see where it goes.

Oh, and my Aunt Francis is going to take a leave of absence from work and stay with mom and dad for a few weeks. It is a better solution than using a nurse in-home for as much time as we would need one...and mom will be much happier with her sister there. She is starting that tomorrow...and is it ever a huge relief for all of us! I did find an agency that we can use when we need, and we actually had a CNA out to stay overnight on Friday just in case, so I think we are set (thanks to all of you who got me leads on finding someone!)

Dad is hanging in there...it was an exhausting week for everyone, so he will need to catch up on some sleep, but other than that (and the emotional toll) he is ok. Same for Chris.

I had some 'off' time this weekend. I had a couple of girl friends over on Friday evening since David was out of town (I was late getting home because of mom's bleeding, but they waited on me!) It was SO NICE and THANKS to Chrissy, Wy and Amanda - you guys gave me just what I needed and you can't know how much it meant to me! On Saturday - with David still out of town (he got back at 7am today), the boys and I went to BJs and the Greek Festival with Amanda and then went to see mom in the evening. Today, the boys and I went to a birthday party for one of Ethan's classmates while David slept and then came home and went out to lunch to catch up with Daddy and ran some errands - we FINALLY made a decision on our patio furniture! Now we just need to buy it!

I am ages behind on laundry, so working on that a bit now and catching up on the computer...still need to write a compelling letter to Kaiser - oh, almost forgot....they denied mom's coverage for our hospice because they are out of network and there are some in-network ones in the area....which I could understand if we knew that from the beginning...but we were with them for Palliative care and got to know those people and then moved to hospice and spent a week getting to know new nurses and social worker and procedures and got equipment and meds....so, we need continuity of care at this point, especially given our unstable situation....and our hospice is smaller and non-profit so they REALLY cater to the patient - we had 3 nurse visits and 2 CNA (nurse assistant) visits last week alone! No other hospice can do that! So, I am appealing it.

Busy, busy weeks for us this week...it is the boys' last week at preschool, so we have end-of-year picnics and other activities. David is in town until Tuesday night and is then in Chicago the rest of the week. Dad has a couple of dr appointments. The boys and I have a playdate on Tuesday...and we will be spending lots of time at mom's.

Please continue to keep us all in your thoughts and prayers!