Saturday is definitely looking up

Ron has done very well in the rehab unit. He walked down to breakfast this morning, then to physical therapy, and then back to his room. Of course, he has been in the bed the rest of the day but he's still done very well, all things considered.

The hospitalist doctor was in this afternoon and they're going to remove the Foley, the IV, and re-dress his blisters (which no look like healing burns). He looks much better today and although he's in more pain from being up, says he feels better.

I couldn't be happier.

On another note, I spoke with my company's insurance representative and found out that I can enroll Ron in one of the plans my company offers. It's still quite a bit more expensive, for less coverage and for a fairly hefty deductible, but way less expensive than purchasing Part B, Part D, and any "gap" coverages. I spoke with the transitions representative today and he said I'd save hundreds a month by enrolling Ron in my health care plan, if my company allows it. So, the plan is to look into our policies during the open enrollment period and see what kind of coverage I can get for us for the most reasonable amount of money.

I'd like to find a hospital bed for Ron and a twin bed for me. That would give us more room in our bedroom because I'd set them up like an "L" and put the bedside tables on the inside. If I did it right, Ron would have more wheelchair room and a hospital bed would be much more comfortable for him.We shall see. This is a very rough mock-up of our bedroom - obviously not to scale - of what I'd like to do. I'm definitely not an architect or engineer.

I'll look around and see if I can find something that's a reasonable amount of money and then see about selling our king-sized bed.  That's the plan anyway. We'll see how that pans out.

I'm feeling much more relaxed about things (for the moment). I slept in this morning (to 8:15) and then cleaned up my kitchen. Yay! Now when I walk in my front door, the first thing I run into will be a clean kitchen. Our front door comes right into the kitchen. I'd like to get laundry done and the living room swept before the weekend is over. It may or may not happen. I need to clean the 2nd bedroom up and do some crafty things. I never did get any Christmas cards made.

I might actually be able to get some things accomplished.

Thursday updates

Got to the hospital this morning and Ron was still resting. I'm glad that he was able to rest some last night.

The blisters on his arm were merging into bigger blisters. Three of the bigger ones became one about the size of a bagel. Yuck.

I spent hours on the Internet last night researching the Medicare parts and Medigap coverages. I wasn't able to make any determinations that would be beneficial to us. I talked to the insurance company and they informed me that effective 1/1/2012 that they will no longer be providing any kind of insurance coverage - ANY, including prescriptions. That was a very big disappointment.

I contacted the insurance company at my employer and am waiting to see what they say. The best I can come up with on my own makes our premiums nearly 4x higher per month than what we're currently paying, and that does not include co-pays or deductibles. I had a rough day after processing all of that.

In fact, my whole day only had one bright spot... Ron walked about 230 feet this morning and then about 60 feet this afternoon. As soon as he is medically stable, he'll be transferred to the in-patient rehab unit.

Tonight, he's not feeling well. Has a fever, had to get two more units of blood because his hematocrit was 23.7 (should be over 43-ish) and his hemoglobin was 7.9 (should be over 14). Dr. A decided to drain the blisters because they were so massive.

I wish I had better news. I am having a bit of a pity-party today so just not too "with it" this evening. I'm trying but it's a struggle today. It's been a very emotional week.

The news of the day

Ron is definitely better today. He's about back to his normal self. But, the day didn't start out too greatly.

In fact, it started out too early for me - at 6:00 AM. My cell phone rang with Ron's special ringer (Alert! Alert! Your husband is calling...) and jerked me awake. He was frantic, thought they were trying to kill him. He said, "You've got to come down here. They're trying to kill me in this place! They haven't exercised my leg at all, they're not feeding me, I haven't had any insulin, they're giving me too much pain medication, and they didn't take me to therapy yesterday. I'm going to die in here!"

I assured him that he had indeed had his leg put on the exercise machine at least twice (I had been there and helped even one of those times). He had been given stuff to eat; the nurse's aid had fed him once and I had fed him once. He'd been given insulin because I watched an injection. He hadn't had any dilaudid for hours because the pump was empty and disconnected last night. He had been taken to therapy (he told me so himself earlier yesterday) but they had been unable to do anything because of his lethargy.

"Besides," I said, "you wouldn't die if they tried to kill you because there are too many people around the world praying for you." But, I told him I'd be down as soon as I could get ready for work and get there.

He was quite surprised to discover how much he had missed during the previous two days. He was very shocked to discover that I had actually been there for part of the times he was sure nothing had been done for him. Next, he told me that he was overdue to have his patches changed. I'd already checked them (last night) and they were dated 10/24, so they're not actually due to be changed until tomorrow morning. That was another surprise. So far, he's batting 1,000 in being incorrect.

I finally convinced him that he had just lost that time and the reason he was in such bad shape was completely due to blood loss and his red blood count. His hemoglobin count should have been from 14-18 but instead it had dropped to 7, which is dangerously low. He is prone to low red blood count due to kidney disease and the surgery just made it worse.

Dr. A came in while I was there and we discussed the blisters and everything else that was going on. They're keeping a close eye on the blisters to make sure they don't get infected. Then, Dr. K's assistant came in and changed the dressing on Ron's knee. It looks really good. I was impressed. She removed the drain and re-dressed it.

This afternoon, the therapist tried to get Ron up to walk but he'd been so long without his shrinker on his right leg that his prosthesis wouldn't go on. I had to come home after work and get one to take back down to them. If it stays on all night, he should be able to get the socket on tomorrow. The therapist did do several sets of exercises with him, so that is good. She also changed the settings on the range of motion machine to make the range broader. Ron rated his pain at 0 today, which is wonderful. If his patches don't get changed tonight or in the morning, that will probably change. But, he did say that his knee joint did not hurt at all. Big improvement!

The dark spot in today is a piece of mail we received. Because he is on Social Security disability, he is also on Medicare Part A (that's the free in-patient coverage). His private insurance from being a Boeing retiree has been picking up the tab all this time for his care over the years. They notified us today that as of December 31, he would no longer have Boeing retiree as primary and he would have to take Medicare Part A and Part B. I don't consider myself a stupid person, but all these things are very confusing. Part B costs more per month just for him than we currently pay for BOTH of us. Add to that the cost of Part D (which is the prescription drug plan) per month, the associated deductibles, co-insurances, what I'll have to pay for insurance through my employer, my prescriptions, etc. and we have a recipe for disaster. Serious disaster.

Ron's prescriptions run approximately $39,000 (retail) per year. Plan D doesn't even come close to paying this much out. The best I could figure out (online) was the monthly premium would be about $110 but the deductible would be about $7,000, and then the monthly co-pay would be around $300 (some months up to $1,100 in the "doughnut hole" period where the plan covers nothing). It would be sad to think that he's come all this way just to have Medicare kill him because he can't get his prescriptions. If we were considered "low income" he could get outside assistance (Medicaid or something) to help pay for the prescriptions (this doesn't even count the $100 per month for diabetes test strips). But, we're not truly low income.  I thought if we got divorced maybe then he'd qualify for assistance but then that would make things worse for me.

I wouldn't be able to live here if we were divorced (even if he was still in Independent Living). If he did go into assisted living, they'd take everything, even the portion of his retirement pay that as a survivor I'm entitled to.

I called my mom to ask her about how she's covered under Medicare. She retired from Southwestern Bell and was a member of the union. As such, her retiree insurance is secondary and her prescription drug coverage picks up where Medicare doesn't. This makes me feel a whole lot better to think that Boeing might be secondary for Ron and cover his drugs. Based on what I read in the mailing it doesn't sound like they will pick up that tab, but I need to talk with one of their representatives to find out for sure.

Either way, this could be really, really ugly.

Better today!

I'll post a more detailed update this evening, but I wanted to touch base and say how much better Ron is today. The two units of blood he got last night made a big difference in his confusion and "alertness." He was pretty much his usual self this morning.

Wonder how many more lives that man has? LOL - he's got more than your average household cat!

Thank you, thank you, thank you for all the wonderful support, prayers, and words of encouragement!

Wish I had better news...

But, it's not looking too great for the home team.

Recap:

Slept in until 7:45, which was great. I fell asleep in the recliner last night while I was watching TV. Woke up a little after midnight and took myself to bed. Only got up once to use the bathroom (yay!).

Got to the hospital about 8:30 and managed to see Dr. K. He'd already been in to see Ron and was not pleased with how he looked. Said he was moving very slowly and he did not think Ron would be ready for Joint Camp today (that's the rehab program at the hospital). He said that Dr. A is very concerned about Ron's heart and the combination of all of the different medications he's taking. Everything he takes could cause a problem with something else and any of them could send him over the edge. Ron already takes very strong narcotics for pain and received very strong medication yesterday. In the spinal, they included a drug that should have given him pain relief for 18-24 hours post-op. It did not give him any relief at all. The dilaudid should have filled in the gap from the other medicine. It did not.

I got into Ron's room to see him sitting in a chair. That was good. He was non-responsive to communication though. Sleeping between words. That was not so good. His IV had been moved to his other arm and he had a bloody bandage on his arm where the first IV had been. I asked him what had happened. He couldn't tell me. I figured since he bleeds easily that the bandage was there because he'd bled when they removed the IV. I stayed for a while and then left for work.

I called him at 1:45 this afternoon to see how he was doing. Questions I asked him were not answered with appropriate responses so I told him I'd see him tonight.

I got to his room about 6:30 tonight to find him in the chair again, sleeping, but holding onto a cup of liquid (either tea or beef broth). I asked him what he was doing. Silence...

Me:   Ron
Him:  huh? how long you been there?
Me:   a couple of minutes. What are you doing?
~silence~
Me:   Ron!
Him:  huh?
Me:  what are you doing? are you eating?
~silence~
Me:   Ron!!!
Him:  what!
Me:   are you eating?
Him:  I think so.
Me:   then you need to pick up the cup and drink or else let go so you don't spill it.
~silence~
Me:   Ron!
Him:  what do you want me to do?
Me:   either let go of the cup or drink it. if you don't eat you won't keep up your strength.
Him:  they're not giving me anything.
Me:   you have a liquid diet (tea, broth, juice, jell-o), and toast. you need to actually put it in your mouth.
~silence~
Me:   (picking up the jell-o) let go of the jell-o so I can help you. (he lets go)
Me:   you have to shut you mouth on the spoon to get the jell-o off.
(finishes the jell-o)
Me:  (picking up the toast) open your mouth to eat the toast.
Me:  shut your mouth and take a bite (he'd opened his mouth but did not close his teeth on the toast)
~silence~
Me:   Ron! bite, chew, swallow

This went on for every bite until 3/4 of the toast had been eaten. He still had one hand on the tea/broth cup. Then, I noticed that his bandage on the right arm had shifted and looked like it needed to be changed, so I put it back into place and rang for the nurse. While I waited for her to come, I took a look at his arm and it has HUGE blisters (about the size of a quarter and 1/4-1/2 inch raised) all over his forearm. It looks like something burned him. Yesterday afternoon I had said something to the nurse about his right hand being swollen and asked if his IV had gotten infiltrated. My dad had one do that and his arm swelled up so I wanted them to look at Ron's. She turned on the light and said it looked fine.

Evidently, it was not fine. I'd post a picture but it really is quite shocking.  I took several pictures of it for safekeeping. I've seen what an infiltrated IV looks like on someone and this did not look like that.

While the nurse was changing the bandage (she said she'd never seen anything like that before) she told me that his hemoglobin had dropped from 11 (which is low) to 7 (which is dangerously low) so the doctor had ordered 2 units of blood. They couldn't find a new site for another IV so they called in the IV team. They couldn't find one either so he'll probably get a PIC line put in either tonight or tomorrow. She also told me his kidney function blood work shows that his kidneys are struggling.

In order to get him into and out of bed, they have to use one of the lift machines. He can't even transfer on his own.

I am looking into our options. I found out that if he is not able to transfer to the rehab program, he'll be sent to a skilled nursing facility (i.e., nursing home) in this area. Schowalter may or may not have room to take him so he could be in the town (or two) north of us or the town south of us. That would not be very convenient for me at all. Medicare will pay for 21 days a 100% and then we'd have a co-pay or maybe our private insurance would pick up the tab. We don't know. If during the 21 days he's progressed enough to be transferred to rehab, he'd go to where ever there was an opening, either at Schowalter or back at the hospital.

If he doesn't progress well enough then he'll probably be in the nursing home for a long time. This is not good. I could be homeless in a matter of weeks. I'm not worried about me; I can put things in storage and hopefully be able to find a room to rent somewhere. There is a hotel in town that does weekly rent so that might also be an option.

There's also my van. I could put it into an RV camp and sleep there if I had to. There is a little place off the highway that would work. That's a last-ditch resort. (Just kidding. I wouldn't park my van in an RV camp. Trying to keep it light-hearted.)

I think I'm going to call it a night. I got home about 8:00 tonight, took out the trash, ate some chicken and some grapes, and now need to do up the dishes and go to bed. I'm planning on getting up early tomorrow so I'm not too late for work. I can't afford to have more unpaid time on my next paycheck. I'm already at 11 hours and that will be a noticeable amount.

Take care ya'll. Extra prayers would be appreciated.

Fatigue?

I never truly understood the term "bone-crushing fatigue" until today. We went to bed last night at our usual time and got up at 5:00 am. That's a bit earlier than usual but not that much earlier (I'm usually up by 6:30). I didn't feel this tired driving to the hospital or even sitting in the recovery room. Our pastor came by a couple of times and I spent the rest of the time reading a book and surfing around the net.

The surgery took longer than anticipated. Instead of 1-2 hours for surgery, he was in there closer to 3 hours. They had a hard time getting the spinal started. Then, he bled a bit more than they expected. Add to that the fact that he had quite a bit of scarring in the joint and muscles from previous injuries and surgery - and contractures of his muscles. That combination lengthened surgery quite a bit.

The surgeon finally came and talked to me around noon. He'd gone into surgery at about 8:00 am.

After he talked with me, I went and had lunch and then went to move my car from the emergency room parking lot (which is also the parking lot for admissions) to the regular parking lot.  I got out to my car and literally had to sit there for several minutes before I felt like I could drive around the building. I think it was just the relief of the whole thing washing over me that made me feel so exhausted.

I had to go get some lunch stuff for this week and mail a couple of things, so I left about 3:00 pm and made plans to return later. I had an appointment for cable repair this evening between 5:00 and 7:00. I got the stuff unloaded from the car, put away the cold items, and then collapsed in the recliner and slept until the phone woke me around 5:00 or so. I'm not sure how long I actually slept, but it did give me back some energy.

I'm the same age NOW that my mom was when she started doing the "hospital routine" with my dad. She did it for 18 years. I don't know how she coped through the exhaustion. I'm sure none of us kids ever gave her the kudos she deserved for all the things she did. She made my dad's last years much longer than they would have been if she hadn't been there to take care of him. I never heard her complain although I'm very sure she must have been extremely worn out through all the times he was in and out of the hospital.

We should have been more considerate of her. Yep...

I'm turning off my alarm and will get up when my body says it's time. Then, I'll go to the hospital and on to work. I need to put in my 8 hours before I leave, but I'll work through lunch (I know... I should get up but can't do that; I'll heat my lunch up and eat as I work) to cut the day down a bit.

I'll try to post tomorrow with an update. Maybe not until Wednesday.

(Note - I didn't post any pictures. Poor guy... I didn't have the heart to even take his picture today. There's always tomorrow.... )

Relief

No matter how often I am in a hospital waiting room and how prepared I think I am to receive news, it still surprises me how that news and the waiting has worn me out.

I am typing on Keith's tablet and it is quite different from my laptop. But the surgery was a success and Ron is currently in recovery.

I will write more later.

The Thank You Cards

Well, I finished them. I wanted to get them completed before Ron's surgery so I worked on them today. I'll package them up to mail tomorrow.

The pictures aren't the greatest because I took them with my cell phone. They're pretty "busy" but my customer likes them, so that is OK. She wanted them all to be in the same color family so that's what I did.

They are black and white with various shades of green. The neon green flowers were purchased but I made the rest of them.

Truth Is Thursday

I have better things to write this Thursday...

Truth is... I have so much to do at work that I have to remind myself to go to the bathroom.

Truth is... I don't have time to eat a meal, either. I eat my lunch in pieces throughout the day.

Truth is... This will go on through the month of November and then slow down (I hope).

Truth is.... I worked on one chapter - that is ONE chapter - today for FIVE hours (yes, 5) getting the pagination to be correct. For any of you out there who might know what MadCap Flare is, you'll appreciate how much trouble that was. We have one source file and four different target outputs. When you paginate one, it could mess with another. It was a pain in the royal behind.

Truth is... Ron is looking forward to his surgery.

Truth is... I'm not so sure I am.

Truth is... I am looking forward to the finished results.

Truth is... Had a great time last weekend with friends.

Truth is... Looking forward to this weekend. I have cards to make for an order.

Truth is... I'll be posting pictures. Hehehe! I'm such a braggart.

Truth is... I am behind on card making. Need to get going for fall and Christmas cards and orders (which I hope I get).

Truth is... I decided that I'm not making my co-workers anything for Christmas this year. Just decided that I'm not doing it.

Truth is... Would you like to know how Ron got himself into this position?

Truth is... He fell in the bathroom AGAIN. We couldn't get him up from in there so he's in the process of crawling to the living room so he can get up into his chair.

Truth is... Crap. What's next? Luckily, he did not cut anything this time.

Had a great time...

We got to Branson about 4:30 Friday afternoon and needed to be at the Sight and Sound Theater by 6:15. Not much time to get unloaded, get something quick to eat, and get over there. Of course, the traffic was wicked busy but my friends knew how to get there a quick way so we were on our way. McDonald's dinner "to go" and we were in the parking lot by 6:00. Great timing.

The outside of the theater is just beautiful.

The inside was really beautiful, too.

Herb, Debbie, Ron, and Wanda
(Herb and Debbie are my friends; Wanda is Herb's mom)

We did not plan to both wear pink shirts; it just worked out that way.

The road between Sprinfield, MO and Branson is very hilly and cut right out of the mountains. As we were driving, I took a couple of pictures of the scenery. The rocks were really interesting looking.

Saturday evening, we went to Yakov's Dinner Theater.

Yakov wrote a book called Little Ballet Slippers & Big Red Nose and he had performers from the Moscow Circus performing the story as he narrated it. The book is loosely based on the story of a circus performer he met 20 years ago in Vegas who told him how much he missed his wife and son back in Russia.

The story follows Andre, a lowly circus clown, and Marina, a beautiful circus ballerina. They share a special friendship and "heart" connection that Marina's sister (Olga) is very jealous of. She is the ringmaster and the owner of this circus and she gives all of the orders. She makes arrangements for the circus to travel to America to perform, but instead of everyone being able to go, she makes sure that Andre goes and Marina is not allowed to go. Love prevails and eventually Andre and Marina are reunited in America.

The true story is that Andre really was the circus performer in Vegas and Marina was his wife back in Russia. Yakov arranged for them to come to America. They both perform in this play, along with their son. It's a very touching story and beautifully done.

Neither of them looked old enough (far away or up close) to have a son old enough to be performing.

Andre and me.
(It's a terrible picture but I wanted to post it anyway.)

Yakov is a very talented performer and artist. The painting in the picture behind us was done by him. The gift shop was full of his artwork.  He's also a professor at Missouri State University.

During the story, the meal is served by the performers and it was very tasty. The food is prepared by a Russian chef and consisted of a potato soup, beef brisket, chicken breast, sauteed vegetables, mashed potatoes, sweet cornbread muffin, and a "twist" on strawberry shortcake - Russian style.

Sunday, we ate at Cracker Barrel and then headed home. On the way home, I snapped a beautiful sunset.