Oh my goodness...what a week !!! First I've been on the computer...been too tired and this beast is most HATEFUL. Don't know what I've done, but it took me 6 tries today to get on the net...keep getting "the blue screen of death".
Friday, Sept. 7...called Bill in the morning. Said they had stopped the drip for his BP and it was holding steady. Asked me to bring him a burger and fries. Richard was here to dog sit...as I was leaving hospice called to see when I would be at the hosp. as they wanted to talk with both of us and sign Bill up. Got to the hosp. and hospice arrived shortly after. The doc. said Bill could go home if he wanted. I lost it...had to leave the room and pull myself together. HELLO...he still had an IV running fluids, the cath and had not been up and moving around yet. Scared the crap out of me. Well naturally he wanted out and home. Since we live in a different county, hospice could not sign him there. Went to fill 7 RXs and home we went. The hosp. notified hospice that we were headed home. That evening the "big mucky muck" came out to do paperwork. She even brought Bill two meds...one for pain and one for anxiety. Asked what he needed/wanted.
Saturday, Sept. 8...The weekend on call nurse came to change the dressing on Bill's central line and get vitals. While she was here the medical supply co. brought a hosp. bed, shower chair and oxygen...both the big thing that plugs in (we call it R2D2) and a portable tank in case the power goes out. Bill wanted to bathe and I was so happy the nurse was here because before he was done I had to sign paperwork and be shown how to use the O2. He still sleeps in the bedroom at night, but hangs in the hosp. bed during the day...only dog to jump up with him so far has been Dixie. Rotten brat LOL After everyone had gone and Bill was settled I ran to the store quick...was very much ready for a cold one. Oh BTW...hosp. bed is in the living room.
Sunday, Sept. 9...weekend nurse came again. Bless her heart, she brought the dogs her left over lunch in case they could have it...enjoyed it with their dry food for 2 days. LOL Can't remember when the hospice social worker was here...either Sun. or Mon. In any case, another busy day with one thing and another and I was whipped. I *think* friends stopped by to see how I was as they didn't know Bill was home yet. I really don't know if I'm comming, going,been there or done that.
Monday Sept. 10...Another busy day. Fed Ex brought meds and we got to meet Bill's primary care nurse, Sue. She is FANTASTIC. Bill still wants a second opinion so I asked what that meant with regards to hospice. A second opinion is OK and he will remain with hospice, but if he chooses to be aggresive then he is off hospice. However, he can sing up again when the time comes. Right now we are waiting to hear if he is approved for medicade. After Sue left I went to fix dinner and heard what sounded like a shotgun. OMG...what was that ?? Well Bill was raising the head on the bed so he could eat and the BED BROKE !!! Called hospice who called medical supply who called me. Said no need to come that night...next day would be fine. LOL what next
Tuesday, Sept. 11...medical supply brought a new bed and Bill just had to put it in a different place so he could see the TV better...they are not allowed to move furniture, so Bill and I pulled his big leather chair out to the middle of the room. Took alot out of him. After they left, I made the bed and proceeded to move furniture around by myself...not easy, but at least now Bill can easily watch TV. Fed Ex brought more meds. Bill is very tired as am I.
Wednesday, Sept. 12...Richard came to dog and Bill sit as I had to go to town to get the rest of an RX that was only partially filled and to have my pre-op blood work done. Few more stops and I was headed back home. Bill wanted breakfast for dinner, so that's what we had...he ACTUALLY ate...YEA
Thursday, Sept.13...Sue came to change the dressing on the central line and flush it. Sent her off with a big plumie in a 10gal. pot..she was a very happy camper. Richard came and cut the dog run for us. Not a good day for Bill so far...his head and left arm are hurting him. Sue is going to talk to the doc about time release pain meds...same as the liquid he's on now, but should last longer. And he still has the liquid in case of a breakthrough of pain. Should get meds again tomorrow from Fed Ex. Bill is looking so tired and thin...he's in the bedroom napping as I type. If anyone wants to send a card, I'm sure he would appreciate it.
Ginger and Bill Holmes...P.O. Box 191...Fountain, Florida...32438
And so the journey continues. For all the prayers,well wishes,good vibes and love We are most grateful and thank you.
Yesterday was a GOOD day. Filed an application for Bill for medicade...business office did it for me. No clue if it will be approved. Done with that and up to see Bill. He looked so much better then when I left the day before...bright eyed, bushy tailed and sporty. They took out all the IVs in both hands/arms and put in a central line, so at least now he is able to do a bit more without messing around with the other lines. No pain meds :-)) Bill told me not to visit today, but rather stay home and call the docs that the hospice nurse gave him. OK good deal as I needed to run to town anyway to take care of other stuff. Him wanting me to call the docs opened up the door for "the talk". Happily it went really well. He said if they would not consult because of no insurance then he would go ahead and register with hospice...also if being aggresive would gain only a few weeks it wasn't worth it. Bill deceided to sign a DNR with the stipulation that drugs and paddles would be acceptable, but NOTHING else as in CPR or intubation. I agree. Drove home feeling so much better then on Tuesday.Called to let Bill know that I had gotten home OK only to find out he had been moved to another room that had a monitor that actually worked. Allowed as how I couldn't leave him alone for 5 minutes before he was looking for better acomendations. LOL
Woke up this morning feeling somewhat rested. Fed the brats and called Bill. He sounded good...had had a good nights sleep. YEA. He gave me a list of stuff to bring tomorrow including a double cheeseburger and fries from McDonalds. Sure hope he doesnt need help from me with a shave and mustache trim...be all over but the crying LOL Got dressed, loaded up Dixie and headed to town. Thankfully my stops were quick and the jeep was fine left running with the AC on. Called Bill. Someone from hospice had stopped by to see him. He allowed as how I would be there tomorrow so I guess she will be back then. I have to have stents put in my left leg on the 17th. and we are both concerned (my spelling sucks...sorry) about going ahead or putting it off not knowing if I'll be kept overnight and how much I'll be able to do for a few days after. Bill was told if he were registered with hospice, they could likely help out if necessary. Good deal...I feel better. He is going to register with them and if it is deceided to be agressive with the cancer all he has to do is unregister and when/if care got to be palative again he would re-register.
Now that Bill is in a room with a working monitor, they have a better idea what is going on with his BP...so far so good and they seem to be happy...so more weaning off the meds...maybe he can home home in a few days. Did get a call back from the doc I called earlier (did not call all of them until I heard back from the first). Bill needs to have a biopsy done...not sure if they can do it in Chipley...before he will say yes to a consult. Without going into detail, I felt like shit after talking to him...so much for another good day. Knew I had to eat, so got creative with lots of garlic (Bill would have pitched it) ate and called him...still sounds up. YEA Gonna have a glass of wine and try to relax.
On Saturday Sept. 1, when I got to the hospital it was lunch time. Bill's nurse brought me a tray too. He didn't look so good and only barely picked at his food. I started to head home around 3:30 as Richard our dear friend and dog sitter was at the house again. Well, my jeep wouldn't start so not having my brain engaged, I went back to the nurses station on Bill's floor. The great flood started down my cheeks and his nurse said I could NOT go in his room in tears. She got in touch with a maintenance man to see if he could help. The nurse was going to let me use her car to run get an RX at Walmart that I had left to refill...how cool is that?? Anyway, no luck with the jeep...deceided it was the battery. Called Richard and asked him to load up Dixie (the "problem child" of our 4) and come get me...said I'd be in Bill's room...so back in the hospital I go. Now it's dinner time...his nurse brought me a tray saying it was an "extra" and insisted that I eat. Richard arrived, we visited for a few..not long as Dixie was locked in the truck. Bill looked awful when we left. Maybe I should not have gone back to his room?? but I figured if I had to wait, I might as well wait with him. Didn't get home until a bit after 8.
Sunday Sept. 2 Richard came over, we loaded up Dixie and headed to Panama City for a new battery and then to Chipley. New battery and success. We locked Dix in the jeep with the AC running full blast and poked in to see Bill for a few. Richard was going to stay and visit, but Bill said NO in case I had trouble on the way home, so off we went.
Monday Sept. 3 I didn't go to see Bill, but we talked several times on the phone...he sounded good in spite of one of his IVs comming out...took about 45 mins. to start a new one. He got a shot of morphine for headachs and fell asleep a happy camper.
Tuesday Sept. 4 Richard came over once again to ride heard on the dogs and I headed off to see Bill. His doc told him to tell me to bring him some fries as his sodium level was low...no problem. Since he told his nurse I was on the way she ordered me a tray and saved it till I got there. It was GOOD and I made a happy plate. Bill looked good and actually ate some of his fries. Still having big trouble getting his BP where they are happy with it as well as the heart rate. When I was fixin' to leave he had another episode with the BP dropping too low, so I waited. When it was looking better I headed out. On the way, Bill's doc took me aside and put cards on the table BIG TIME. Saw his CT scan...such a mess. Tumur is huge and so much spread to the lymph nodes and chest wall. In doc's opinion, no light at the end of the tunnel. Now he is saying likely 3 months insted of 6. If Bill opts for agressive treatment it "might" gain him another 2 or 3 weeks only since there is so much other stuff going on. Bill also said if it came down to it to put him on a ventilator which I know he REALLY doesn't want. Told the doc as much and also that I was against it if no hope or light at the end of the tunnel. He said ok...if it came down to it he would not be aggresive. I so feel like I'm caught between a rock and a hard place knowing that Bill would NOT want to be kept alive on machines, but also realizing that he truely doesn't know or is unwilling to accept how VERY sick he is. I don't know what to say to him that won't make me sound like an uncareing bitch. I don't want him to go through a bunch of stuff that in the end won't help. I'm overwhelmed and tired.
Monday Sept.3,2012
After carping at Bill for two months to go to the ER, he FINALLY let me take him last Friday Aug.31,2012. He had lost quite a bit of weight, was caughing up junk and in general miserable. When we got to the ER he was a VERY sick puppy!! Dehydrated and his BP was very low. IVs were started...4 as I recall. His heart rate began to race and BP bottomed out. Drugs to fix one did not "play nice" with the other problem. They even zapped him twice trying to get the rate back where it should be...once or twice he almost coded. The doc deceided he was just too sick for the small community hosp. in Chipley and planned to ship him to Bay county, but first ordered a CT scan. When he returned from the scan, the BP and heart rate had settled down, so it was deceided to keep him there. Bottom line between x-rays and the CT scan the doc said cancer. Big time in the left lung, likely in the right, but worse it had already spread to most of the lymph nodes and chest wall. Without a biopsy and path report he could not say for certain the type or stage, but in his opinion six months left. I headed home around 4:15 as we had a friend who had spent the entire day at the house riding herd on our 4 rotten dogs.
When I called that evening, Bill said his ER nurse had stopped in with her husband to see him...think he's a preacher, but not sure.Someone had also called Hospice, and the "on call" nurse (?) had visited and left a handbook for us. At first he wasn't going to try to see an oncoligist, but after talking to her and getting the names of several in Bay Co. who would likely see him even without insurance he wants to get a second opinion.
OK...here is another place to "chat" other then the Sand box forum. Stupid stuff, nonsense or whatever. Just wanna have fun. Only request is we all play nice and don't get in any bodys face. We all at times need to "blow off steam" or whatever and I want this to be a "safe haven" to do that. I am new to blogs....if something important happens I mark it on the calander and make note of it on next years calander...(this beast does not always play nice.) For instance the last time I got a tetnus shot was in 1989. This I know because I marked it on the calander and have done so for ? years. Anyway, let's play and have fun...feel free to start a new post here.
