Late Summer Staycation

Familiar View

 Here's the view from Dad's room. It's room 701 and it's an isolation room which he doesn't need but it was the only one available. Basically it mean a HUGE room with a separate room for the nursing stuff.

Today was a crazy busy day for Dad. He had another whole round of tests and procedures. So they have figured out that the infection is in his heart valves as well as the rest of the body. Originally they were thinking of removing his defib/pacemaker so that it could be eliminated from infection but as of today they are not thinking of doing that now.

He will be on antibiotics until transplant now. He will not be rid of the infection per say in the LVAD pump or the pacemaker/defib because they are foreign bodies and will remain coated in the "bug". By constant administration of suppressing antibiotics it will keep the infection away from the rest of his body and at the time of transplant the foreign stuff will be removed.

After this "bug" is gone he will move up on the list. Everyone always asks what number he is. He is not any number, there are no numbers. Every two weeks the transplant team meets to discuss the critical cases. They decide from day to day minute to minute who will get the organ when one becomes available. So there really is no number, you can only move up and down. He will be at status 1A/B because of the infection. So if there is any sign of infection present when the organ becomes available he will not be able to receive the heart.

Mom has been staying with Dad at the hospital and today the "aunt squad" came to rescue her and take her out for dinner. Thanks Aunties :)

I have to say I have the best group of Aunties a girl could ever want! We couldn't ask for a more supportive family than the one we have! Auntie Mary came to visit after her appointment at Dana Farber which went very well and she is doing AWESOME! I was glad she was there when the team came in to go over a few things. She is a nurse and has a ton of knowledge about all of the drugs and procedures for infection. She was able to explain things and tell us why they were thinking what they were. She also helped us get a nurse to come in when it was change of shift and his IV alarm went off for 37 minutes and he needed more of the drug! We hate shift change!

They are covering all bases. This is a brilliant doctor who is an M.D. and a PhD. She is an opthomologist for one and has a whole bunch of letters after her name stating her credentials! She found a few things in his eyes that are not uncommon with infection and he knows he has macular degeneration and a slight cataract in one eye. There was no signs of raging infection on the optic nerve which was a very good sign.

His white cell count was at 14 ( pretty bad ) on Tuesday. Normal levels are between 6-10. As of today he was at an 11 so he is heading in the right direction. He is responding very well to the antibiotics because he has not been on antibiotics in almost 30 years other than in January and last week! SO there's a giant advantage that I myself would not have. His kidney's are still not recovered. They are not getting worse which is a good sign that they stopped the progression of renal failure. So they are just waiting for that to turn around and then they may add in another antibiotic if they have to.

The good thing about the Brigham is that they always have stuff to look at. They are running a nursing series right now in one of the lobbies. There are a bunch of antique nursing uniforms and a history of each uniform. Did you know that nurses did not start wearing all white until after WWII?

Lastly I need to give a shout out to my Goddaughter Adele. Today was her very last day of preschool! She loved, loved, loved "Little Beginnings Preschool" she will miss all of her friends from school. I can't believe she is already going to kindergarden! Where does the time go?

That's all for today. Thanks to everyone for all the calls, texts, visits, cards, meals, rides etc. We are very lucky to have such wonderful family and friends.

Until tomorrow,

Laurie