Day 87

"The best plans of mice and men oft......" We are told Stan can't come home until Monday because they need to monitor how the new meds affect his coumaden.

I went on the web.....I know, here I go micromanaging.... and read a bit about mastoiditis. Most of the info said antibiotics are usually given by IV and it takes weeks of monitoring before you are okay. Another site mentioned hospitalization was usually required.... so JUST WHAT is the real reason Stan is being kept until Monday?? If I sound skeptical, it is because his doctor (the in house doctor at St. Elias.... they have five that rotate in and out every 2 weeks or so...this is the doctor who was his first contact at St. E, and is now back in the saddle.) based his assumption that Stan's headaches were "normal" and nothing to be concerned about on his asking Stan ONE time if he had a headache, and was told "no." I was told by a nurse that Stan's severe headaches starting on Tuesday were well documented. To me, "well documented" would mean that not only were they mentioned, but that they occurred when he coughed.

Stan was left to suffer for three days and two nights before any treatment or even stronger pain meds were administered....based on the doctor's assumption!

When I heard the term Mastoiditis I was alarmed because when Andy was 14 months old and I called my mother to ask her if she thought he had the mumps based on the swelling behind his ears in his neck area....she became very concerned that he might have mastoiditis....and she considered it very serious. Turned out, he had mono!! But I still remember Mom's reaction... According to the internet, it "used" to be very serious and often fatal before antibiotics. Well, guess what??? Antibiotics aren't going to do any good if they're kept on shelf!! Stan wasn't "diagnosed" and given them for three days!

I have only heard from the case manager. It was later in the day when she called back about the bed etc delivery, that she told me Stan would have to stay until Monday because he has sinusitis and mastoiditis. Earlier she had just told me about the sinusitis.

I didn't get to the hospital yesterday until evening because I had to stay home to receive the bed, lift, etc....and sign for them. They didn't come until about 4:40, had to be put together, and I had to be "trained" in their use. They are a medicare rental use...and very awesome. The bed has the split rails, and it has a mattress lining that is made up of a multitude of round air pockets that are controlled by a motor. The pockets alternate in hardness and softness to help keep him from getting bed sores. We have been very blessed in that department so far! Six weeks in each hospital...and NO sores!

The lift is manual...so will be much "harder" than the one at the hospital to lift and move him, but also has more flexibility. It's "legs" are two "tines" that can be adjusted wider apart to fit around a chair, for example, so that you can get closer. The one at the hospital was a curved bar, so that when you bumped into the chair, you could go no further. I think it will work great for me to concoct an apparatus that will allow me to roll him from side to side for clean up etc by myself!! I have been trying to dream up a motor or something that would allow this...I now have the "method" so I just have to design something to put under/around him for the turning.

The nurse and aide last night who were on the night before tried to "play down" the bleed. But I did find that after Pete left, the doctor was called and came in.....we're talking middle of the night. Doesn't that sound like a little abnormal to you?? I really am getting scared to leave him. First the head being banged on the end of the bed, not being reported, when we did ask about it we were misunderstood, as in "his head hit the trapeze bar above him" ... NO WAY... his head hit the bar at the head of the bed while he was being pulled up in the bed. He tends to slide down and his feet get all pushed up at the foot. If he had been sitting up and bumped his head on the bar above...NO, he wouldn't have had a very hard hit. He says it felt like he was hit with a baseball bat.

Next....the signs being ignored and his BP being taken in the clotted arm. Even if it didn't hurt, it scared him so much that he became extremely agitated! And now the picc line leaking .... enough in one hour to soak a pillow case and leave a huge congealed area of blood.

What is very upsetting, too, is the "accusation" toward me on Thursday by the doctor saying "Stan would be back in a hospital in the future" inferring or stating (can't remember which...I was a bit in shock) that it was because I was taking him home instead of putting him in a nursing home type unit.

Okay...sorry...too much frustration here!! I need to get going to see how he is this morning. Brian and Angie came later last night and massaged his neck and feet. (and my neck, too!) Katie filled in for me at noon and fed him, which I was so glad to learn, and Sondra and Christi ministered to him in the afternoon. Pete was there in the morning to feed him bfst and Andy stopped by before coming to the house to help me continue to get ready.

The kids were awesome. I did an about face on where I wanted to put Stan's bed and so that meant getting an entirely different area ready. The downstairs turret room is where Stan spent most of his last two or three years when he was relaxing at home, so I know it will be comforting to him. He is looking forward to sitting in his large recliner! Also, it has a large doorway opening for easy deliverance of the equipment...and...it is just steps away from the front door. When summer comes, I can wheel him out on the deck either in the wheel chair or the bed.... It can be curtained off if necessary, or left open to the entry so Stan can see everyone who enters. My original plan was to have him upstairs so that I could be busy about cooking, computer, etc and still be close to him. I'll just have to adjust my activities....but I began to realize that mostly...there was no way I was going to get him up and down the stairs for doctor appts. etc.

An hour ... or even half hour... before the bed arrived, I was ready to panic...but it all came together and I am very pleased with the result!!

I need to go.... so will let you all know about today's events as they happen!!!

Love, M