Getting Better All The Time…Whew November 9, 2009

Since the last post TB’s gotten stronger and has become much more confident with the walker. He’s also learned to not push it and by not pushing it, he’s in a better frame of mind as well about doing his exercises.

Last Friday the physical therapist had him practice going down the front steps. Knowing he had a follow-up / post-surgery doctor appointment today (he’s there right now, I can’t be there as I’m leaving for school in just a couple of minutes) we knew we needed to know the process for going up and down stairs so he could leave safely to go to his appointment.

Though he was a bit shaky going down the steps during the process he did that very well, it was when he was attempting to go back up the steps that he froze in front of them. Apparently it’s totally normal but it still freaked him out badly, he was shaking. I’d never seen him like that before, I felt so bad but he had to do this, I couldn’t and nor could anyone else. He said he had no faith in either leg, the one that had the surgery OR the one that didn’t. Once he was confident that the two of us were there to stabilize him going up he managed to do it. Yeah!

Over the weekend we did more of the exercises and he did quite a few ‘walk-abouts’. That’s what we’re calling his trips using the walker to the bedroom, through the dining room and the kitchen and back to the living room. At first he was almost panting when he finished one round, but last night he wasn’t at all. The leg doesn’t have the horrible pain anymore, it’s more of a deep ache. He still requires pain meds and he’s a bit tired but it’s all expected and all normal.

Today the therapist came and helped him go down and back up the steps twice and TB said he felt so much more confident now that he had done that. One of his good friends came to help finish cleaning out the gutters today and he’s the same one who took TB to his appointment. We’re both comfortable with him as he’s a big guy (6′ 3″ or so and over 200 pounds, strong!) and with the stablizing belt TB can use when he’s using the steps it should work out much better on their return trip. Fortunately, we don’t have much in the way of steps – there’s only one step to get out of the house to the top of the stoop, then it’s two steps to the sidewalk. So in that respect we’re very fortunate. Plus the wrought iron railing is a bonus.

Cross your fingers all goes well at this appointment. The scar looks really good – if you can call an earthworm-looking scar that’s nearly 13 inches long good – so hopefully the staples will come out and he won’t have to wear the embolism stockings anymore. Those are so hard to get on and off, oh man, worse than nylons for a woman!! If you’re a man and reading this – just trust me – it sucks.

Okay, must fly to school. A sincere thanks to everyone who has been so supportive – family, friends and strangers alike. We thank you.

Quit Pushing, Dude! November 5, 2009

On Monday this week, the physical therapist came to give TB a work out session. But TB ended up over doing it. He keeps telling his friends and whoever else will listen, that I was worried he would overdose on the amount of Oxycodone and Oxycontin he was taking after the session and through to Tuesday morning, and that there was no need to call the nurse to come by to check on him on Tuesday. He’s wrong – allow me to explain.

During the session, the therapist explained to TB that the intensity of the exercise should be just to the edge of when pain begins, then he should stop the bend/kick/lift/whatever he’s doing. The fact he had taken a pain pill before the session may have worked against him because doing so probably caused him to think he was only pushing to his limit, but because the medicine masked some of the pain, he actually exceeded what he should have done and didn’t realize it until later. Unfortunately, he paid in a very painful way.

While the therapist was here, one of TB’s friends came over and cleaned out the gutters of the house and blew the leaves off the roof, typical fall type work that TB can’t do right now. Another friend came over on the weekend and blew all of the leave out of the window wells, the lilac and flower beds and all of the other nooks and crannies so that I could take the mower and crunch over them (we don’t bag the leaves, we mow them so they basically get mulched into the grass). That friend also put up Christmas lights along the carport – I know it seems early to do that but in our state you take advantage of the good weather in the fall to get the lights up. But never fear, though the lights are hooked up they do not get turned on until the day after Thanksgiving.

TB also did a ‘walk about’  during that session in the house using the walker. He’d been hesitant to do any additional walking on it other than to go to the bathroom. He said there’ s a confidence level you have to attain and that using a walker is not intuitive so he really has to concentrate. I was okay with especially once he started to ask me for pain pills. Lest you think he is incapable of making his own decisions on what meds he needs to take, I monitor them for the simple fact it’s easier that way. Plus it’s not just pain meds he’s taking, he has meds for blood pressure, cancer, and phosphates plus he takes a med that helps stimulate his appetite, a med for his blood, laxatives (because of the narcotics), and aspirin and something else that I can’t think of. So it’s my job and I think on Monday he didn’t like that it was my job.

From about 5:30 pm on Monday night until 6 am Tuesday morning, TB was in agony. I kept a list of how much of the pain meds I had given him and to me it was high since it was 2 to 2 1/2 times the dosage he normally has but he was so insistent and pissy about it. When I checked him about 2:30am I noticed the bandage had blood on it up near the top of the leg. I didn’t like that much since we’d been home nearly a week and not once had there been blood on any part of his leg. So in the morning I called the home care folks and while I was at school the nurse came by, looked at it, changed the bandages and said he was fine. But – and there is a but – the dude over did it. Hence the blood. Hence the pain. Hence the fact that it was good I had the nurse check him.

Today he had another session and this one went much better. Except he’s had a couple of what he’s calling panic attacks – he needed to have the windows open today even though it was quite cool outside so he could HEAR sounds other than what he could hear in the house. I’m trying to type quietly now so he can relax but since my natural typing speed is quite fast it’s very difficult to go slow and be quiet. So I’ll have to end for tonight.

More tomorrow or Friday.

 

Happy Halloween! October 31, 2009

My previous post ended with:

I bet you any amount of money that some other thing will happen or change between the time I leave here and arrive there.

I was so correct. Not all bad, but disconcerting none the less.

After I got off the phone with the social worker (on the cell phone) and with TB (on the land line) while at home, I saw our neighbor and asked if she would take me to pick up a walker. Since he was coming home that day, Tuesday, Oct ^27th, we knew he’d need one at the very least by the next morning. Once we picked that up I asked her to just bring me directly to the hospital if she could and I’d bring the walker with me because I didn’t know if he’d even need it to leave the hospital.

I got up to the 5^th floor, went to room 510 and stopped in my tracks. There was someone mopping out the room, no patients, no personal items, no nothing. I think my heart stopped beating for a second.

My initial thought? Oh. My. God.

I turned and walked to the nurse’s station and in an unbelievably calm voice said that my husband wasn’t in his room and that I’d like to know where he was. They asked who he was and just as I told them his name I heard from behind me, hey Patty, I’m in here. I turn around there he is in room 503, getting his bandage on his leg changed.

Apparently, after his roommate was discharged earlier in the day, there came a request for a room for two women who would be coming out of surgery so they needed the room. TB was moved to another room until getting discharged later in the day (his new roommate was getting ready to go into surgery, very old – perhaps late 80’s – he was in really bad shape with a broken his hip, problems from Parkinson’s plus hallucinations, really sad to see) and so that the room could be cleaned and readied for the women.

Over the next number of hours (I got there around 3, I think, and he was officially discharged about 10:45pm) he had his two blood transfusions, I learned how to change the bandages, we ate, we tried to figure out transportation because there were still questions about the timing of discharging so who was going to take him home, do we arrange it, are they going to, made a list of medical equipment he’d need, etc.

When all was said and done, he was transported home in a Life Link ambulance on a gurney. We’ll be billed for a wheelchair transport because that’s what we were promised (far less expensive) but because that wasn’t available, he got the ‘big rig’. Think that boosted his ego a bit? Of course!

The ambulance attendants, both women (cool!) really took a liking to TB. Most people do, he’s pretty charismatic in his own way. They got him all set up on the couch in the living room when we got home and made sure we had all of his valuables from the hospital and the walker, etc, etc.

Since then it’s been a very busy but productive number of days. We have a physical therapy schedule all set up (they’ll come to the house), a nurse will come at least once a week as well to check his blood and do other lab work, we’ve got the necessary medical equipment that will make life a bit easier, and I finally got to go to school to take my exam I missed on the 22^nd. I know I didn’t get a 98/100 (what I’ve gotten every test so far) but that’s okay, I think I still got an A but even if it’s a high B I’m okay with that. There’s plenty of time to make up any points if I need to in order to maintain my A.

My instructors have been amazing, providing moral support plus giving me extra time if I need it to complete assignments. But except for that exam that I finally got to on Friday, I only have a couple of chapters of work to do and then I’ll be caught up. That’s what this weekend is all about, catching up and giving both TB and I a bit of time apart. Even if that means I’m just down in the office and he’s hanging on the couch.

If family or friends would like to visit, you certainly may and he’ll appreciate it because he’s considered housebound, per the nurse, until she says he isn’t. But be sure to call first to see what time works best because of his physical therapy schedule and the nurses, etc., and also to see if he’s in the mood. He’s definitely getting stronger but he does take an occasional nap (works for me!). The really good thing is? He’s eating!!

Must…Calm…Down… October 27, 2009

A frustrating day. First, we’re informed that TB needs to go to a transitional care unit and that the social worker is attempting to find him a bed somewhere. Then this morning TB was told that they can’t get him a bed because he’s a chemo patient. I then spent the next half hour trying to figure out how to get him home (he really needs a van type vehicle) and was really peeved because then why was anyone looking for a room in the first place, plus, what equipment do we need to get now that we have just been told this with only hours before he’s discharged?? To top it all off he now needs a blood transfusion that will take a good 7 to 8 hours.

 

So I’m on the land line phone here at home with TB while he’s telling me this and my cell phone rings, it’s the social worker who says she has a room for TB but I told her I didn’t understand, he was told he can’t go somewhere because he’s a chemo patient. No, no, no, that’s not true. I told her she had to go in his room and tell him what’s going on and then call me right back.

 

While I’m waiting for her to call me back the surgeon must have conferred with her and Frank and they now told him that no, you don’t need to go to transitional care, we’re going to set up home care. You’ll leave tonight after the blood transfusion.

 

Good God, could the group of you get on the same freaking page???

 

TB calls me and tells me this and I had to calm him down which was so difficult because I am not calm right now myself – not in the least.

 

I’m leaving now to go to the hospital, I’m absolutely furious. And I bet you any amount of money that some other thing will happen or change between the time I leave here and arrive there.

Sunday Update October 25, 2009

TB called me last night and was very medicated and apologized for being in a bad mood when we visited him. I told him because he was in pain, that he deserved to be in whatever mood he wanted to be in!  He babbled on for about 5 minutes, clearly the meds were working as the things he talked about were totally random yet suddenly something completely coherent would slip in.  I had to talk rather loudly at the end of the conversation to tell him to hang up the phone  because he was falling asleep.

I went to the hospital late this afternoon with one of TB’s good friends. TB was up in a wheelchair when we got there and looked a bit spaced out but nothing like he did yesterday.  It was amazing to see how much he’d improved since I saw him last,  he’s certainly not 100% ok but he’s far better than what he was.

He had a physical therapy session yesterday after which he fell asleep in his wheelchair and two sessions today. I should point out that he does not have a cast. His leg has bandages over the incisions and a brace. When he’s sitting in the chair his leg is hanging from cloth loops to keep it elevated. When he’s in bed he’s using something he referred to as a CPM, I haven’t done the research on what the letters stand for but his leg sits in it while he’s in bed and it’s constantly moving to keep the leg in motion.

About an hour after we arrived we took off. I had noticed that about every minute or so TB’s eyes would get a glazed look in his eyes and then boom, he was back – but there was more checking out then staying checked in and his dinner had arrived so it was good timing to leave anyway. I’ll be heading back sometime in the morning to check on him. I should also know tomorrow where he’ll be going for transition care and for how long. He is completely on board with that, by the way, but only if he gets a private room. That means I didn’t have to convince him – he actually mentioned first that he was not ready to go home yet. That’s a huge relief, trust me.

Well, I’ve gotten some of my homework done from missing school last week but still have more to do so I’m going to end this post for tonight. I plan to go to class tomorrow afternoon but Tuesday is still up in the air until I know about transitional care, since I’m his decision-maker I need to be there. Once he’s in transitional care I’ll be back to my regular schedule (for the most part) and he’ll develop one that will be in a more relaxed environment than the hospital.