Beat me to the punch...

Well, I am glad Emily finally posted something here on the blog. As you can tell - a lot has been happening, and I have been feeling horribly negligent about NOT updating the blog. I JUST got back from visiting Dad and was all determined to update here - only to find that Emily had beat me to the punch.

So - I will tell you all a little more about Manor Care. As you can gather, initially we were a little surprise/disappointed in the care Dad was getting here at Rehab. The facility - as with most rehabs - is also a nursing home. So it has the depressing atmosphere that we all associate with nursing homes. There are so many "old" people there - who will never be anywhere else. There are really sick people, who you wonder how they are surviving still at all. Then there are my favorites - the poor people suffering from dementia. There are all different levels of dementia. There is one great charming gentleman from Budapest. (Well, he says he is anyway - and he has the accent.) He is pretty normal. He walks the halls and can carry on a normal conversation. (Although - as Mom was waiting for the elevator one day he came up next to her and asked her if she liked to drive. Mom told him, yes that she did like to drive somewhat. So he said "Thank you." and stood waiting for the elevator with her...) Then there is the poor man in a wheel chair outside of Dad's door who spends most of the day yelling and moaning. He also has concerns about driving. However, in his case he thinks he is driving down the highway - and either CAN'T drive, or thinks he is driving on the wrong side of the road. Dad't roommate is a very nice man names Marlow Mason. He, initially, watched TV all of the time - which made us crazy (as I think we mentioned). Now - he enjoys listening to Mom reading to Dad. He is also in charge of the book table at the rummage sale they are having next week. He still watches TV - but I have seen him doing this in the lounge more than in his room. He also is always pleased to see me when I arrive - although, he mumbles when he speaks - so I can't have a conversation with him. I am not sure why he is there... (he is, however, in a wheelchair most of the time...)

I go to see Dad every day during my lunch break. Manor Care is about 10 minutes from where I work - which is more convienent than Sinai was. Mom really likes Dad's case doctor - and the therapists. The nursing staff still isn't the crack staff we came to expect from the second floor nurses at the hospital - BUT Manor Care isn't the hospital - and so once we adjusted to that notion we have been pretty pleased with Dad's care. Everyone is very plesant (at least in my experience). The thing I have noticed here is that many of the people have regular visitors like Dad does. In the hospital I never noticed many "regular" visitors (although I am sure there were some...)

I asked Dad today if it bothered him to be in the nursing home atmosphere. He said "No. Not really." He realizes that this is a step forward and that most of the people there are in much worse shape than he is. I was relieved to hear this. I was concerned that all of the truly sad cases would be cause for further depression. And that he may fall under the delusion that he was as bad off as the others there.

Dad has had one of a series of cognative assesments. He passed it just fine. (The only question he flubbed was when he was asked who had come to see him that day - he listed everyone, except Mom - who was sitting RIGHT there!!!)

So that's all the news thats fit to print right now. I hope we will not be so negligent in the future.

If anyone wants to give Dad a call let me know - I have his phone number. If you want to write to him - his address is 7001 North Charles Street, Towson, MD 21204 room 237.

See ya!
Amy

After Two Weeks of Rehab -- and All Tubes Out!

It's been an up-and-down two weeks, more up than down, thank goodness. The first weekend was very rocky -- they wouldn't feed Dad because his paperwork didn't indicate that he'd been getting anything other than bits of pureed food under the swallowing therapist's supervision, and then when his J-tube got blocked after a day and a half they were overly eager to send him straight back to the hospital to get it fixed! After Mom got over her initial shock she called them back and tried to talk them out of sending him there, and then she got the hospital involved, and they gave instructions on how to get it unblocked. Sarah visited that same day, and in the course of all this it came out that the rehab center thought he was 96 (!!), not 76, and we weren't completely convinced that they realized he was there for rehab, not as a permanent resident. But we got all that cleared up, and they got his tube unblocked, and once the regular staff came in during the week things began to settle down a bit. (And we snuck in some applesauce and yogurt over the weekend so that Dad wasn't limited only to hard ice chips in the meantime!) The swallowing therapist supervised Dad through a few meals and then started allowing him to eat three meals of pureed food a day. The food is pretty terrible -- it's bland, institutional food -- but it's better than the alternative of no food at all. They want him to get 3500 calories a day, which is an enormous amount, but Dad has been making a heroic effort.

On Monday of this past week he had his TPN (IV feeding) line removed! We were all pleased -- this line is an infection risk, not to mention an inconvenience to Dad. His food intake was enough that they thought with the stomach tube he was getting enough calories. Hooray!

Dad's physical therapy has been coming along slowly. For the first weekend they left him in bed the whole time, but early last week they started getting him into a wheelchair (very uncomfortable on his still-unhealed bedsore) and by the end of this week he was learning how to propel himself around in it (and he propelled himself to right next to Mom when she arrived! Isn't that cute?). They made him practice walking between a set of parallel bars, and this went so poorly that they really didn't believe us when we said he'd been walking substantial distances in the Sinai hallways before he was transferred. But once they got him a walker things went much more smoothly, and he's making steady if not exactly rapid progress.

He has had two trips back to the hospital since he first arrived. The first one occurred in the evening in the middle of the first week, and nobody called Mom to tell them he was going or anything! Poor Dad was stuck on a gurney (on that awful bedsore) in the ER for a substantial portion of the night before they finished treating him, so he had a lousy night with no sleep but the medical problems turned out to be minor. It took him several days to get his sleep cycles back to normal, from what I can tell. The attendant at the rehab center got a reprimand for failing to contact Mom -- he was full of excuses but very short on apologies!!!

The second visit occurred in the middle of this week. Dad has been upgraded to chopped food (which is very tiring for him to eat, after four months of no chewing, but at least it's usually recognizable) and a little bit went down the wrong way. His lungs were clear, but he had some chest pains which everyone guessed were nothing (no more than any of us would have after inhaling our food), but with his history of heart failure they couldn't take that risk and had to take him to the ER. This time Mom was there and was able to come along, and as we hoped, everything turned out to be normal. His blood pressure was a bit low, and his heart rate was very good, so they kept an eye on him for a little while and then sent him back to Manor Care.

Mom was worried that because of this they'd put Dad back on pureed food and delay the removal of his J-tube even further. But the next day, Dad's doctor came in and took a look at Dad's J-tube. It was still an oozing mess, so Mom said, "Why don't you just take the damn thing out!?" The doctor was amused but agreed to remove it if Dad would be very, very good and eat all the food he could stand. The doctor pulled it out (and was amazed it was so long) and said it would heal up quickly, perhaps within a day (ha! This man doesn't seem to understand the "expect complications" rule with Dad!). Dad wasn't allowed to eat for the rest of that day, and as a result he was very light-headed for the next day, but he is recovering from that. As of yesterday the site was still leaking a bit every time Dad ate, but we're hoping it will heal up eventually anyway.

I saw Dad when he was transferred to the rehab center, but now I'm back in Virginia for a while (at least until the baby arrives and we have some time to recover), so most of my news is second-hand, as usual. Nevertheless, I'll try to keep the blog updated a little more often than we have of late, at least with any major events!

Four months

I can't think of an appropriate title for this entry!

Dad is out of the hospital!!!!!

After exactly four months, he's finally out! It happened with very little warning--Mom was told this afternoon that there was a bed available at Manor Care (a nursing home in Towson that is able to take patients receiving TPN) and did she want to have him moved today or Monday? Well, today, obviously! They started the ball rolling and made arrangements for an ambulance to come transfer him at 7 p.m.

I got to the hospital around 6:30--it was strange to see Dad in bed with no IV's or monitors of any sort. He said he was excited about getting out, but that he would miss the place (or at least the people and level of care at the hospital) and was also a bit nervous about the move. I was too, to be honest--even though it is a step forward, it also means that he won't have specialists on call all the time, that the nurses won't be as available or attentive, and that any emergency care will require an ambulance ride, not a trip down the hall. Of course, I was nervous about the first move out of CICU and into the main hospital back in January!

7:00 came and the ambulance arrived and the move was made with no complications at all--by 8:00 he was settled into his new room (not a private room--we're so spoiled! And I hope his new roommate's devotion to television abates a bit. The man was up watching t.v. when we arrived and then went to bed, turned the t.v. around and fell asleep watching it. That'll drive Dad nuts pretty quickly!) and his new nurse was checking him over, getting familiar with his history, and making him comfortable. When Mom and I left at 9:00ish, he was settled in for the night and very tired (although they still hadn't started his food or TPN). I think it'll take a few days to get adjusted to the new circumstances, but I hope he very quickly sees more progress in his strength and independence. His physical therapist today said that she thinks that if he works hard, there's no reason why he couldn't regain all of his strength eventually.

Dad says hi!

Food, glorious food!

Dad has been progressing like mad in the past week. Since his not-quite-pass in the swallowing test last week, he was supposed to get soft foods and thickened liquids from the SLP only, but early this week, that got put aside in favor of allowing him to eat these food under the supervision of a nurse. Mom brought in homemade applesauce and his favorite yogurt so that he wouldn't be stuck with just hospital jello and applesauce and things like that. Now it appears that they are bringing him three meals a day and just letting him eat on his own. I just spoke with his nurse (Mom being out of town for a couple of days for a funeral) and found out that this morning he ate all of his pureed french toast and orange juice, although he wouldn't eat the grits (can't blame him--it would take more than a heart attack and stroke to get me to eat grits!). He had pork chops for lunch but wasn't hungry, again not surprising since he's so unaccustomed to food at this point. His nurse said that he seemed really pleased to be eating three meals a day again.

They physical therapist has been coming by almost daily (she missed yesterday, so I called today to nag) to take Dad for a walk in the hall, and he's spending more and more time in his chair, although he is more comfortable in bed and needs a great deal of assistance getting in and out of the chair/bed. Yesterday Katie and I took Dad outside for a while in the evening. It was such a beautiful day and it seemed too good to miss, and Dad really seemed to enjoy being outside for the first time in four months. The trip turned into a comedy of errors, although a lot of it wasn't that funny--when I got to the hospital (later than I had hoped) the shift change was taking place, which means that all of the nurses are tied up for up to 45 minutes. They had already said it was o.k. to take Dad outside, but they wanted to start his tube feeding first (to avoid having the tube get blocked, they need to flush the tube regularly and keep the food flowing as much as possible) and then they all disappeared for the shift change. Katie and I realized pretty quickly that not only would they not be starting the food anytime soon, but if we didn't get moving, the sun would set before we got Dad out. So we just left with him--unplugged the IV pump and pushed him down the hall and out the door. As soon as we hit the front door, his pump started beeping (low battery warning). We plugged up the alarm as best as we could and just stayed outside enjoying the fresh air until it started to cool off. As we headed back inside (did I mention that he was in his big armchair and not a wheelchair? It was like trying to manoeuver a barge.) the batteries failed entirely, but fortunately Brenda (one of the assistants) met us on the way out and helped get Dad quickly back upstairs and plugged in.

So all should have been fine except that the pump decided to not work properly, and Dad's evening nurse was dealing with an emergency with another one of her patients (which would continue the rest of the evening). Brenda tried her best, got in another nurse or two, switched lines, pushed buttons, tried to find a new pump (they assured us this had nothing to do with going outside), and somehow, eventually, got it working again, although it kept stopping and beeping for the next two hours. Once that was going, Dad asked to get back in bed--it was 8:30 (much later than he was used to being out of bed), he had been in the chair for two hours, and he was tired. But again, it took a long time for this to happen since we had to wait for his nurse to be available. Finally she came in and we got Dad back in bed--and then his bed wouldn't work (it's an inflatable water filled fancy thing). For the next almost two hours he sat in this rock hard uncomfortable bed not complaining, while again the nurses and assistants tried to get the bed working. His nurse promised to call for service, but kept getting called away by her other patient. I tried wedging pillows under Dad to make him more comfortable, and I was really worried about his bedsore and all the pressure on it. The nurse finally called for service and we were waiting for a technician to call and tell us when he could come in (oh, maybe next Tuesday?) when another person on the hall somehow managed to get the bed working. Thank goodness! By then I was asking if we could just switch him to any available bed since it might have been a long time before a technician could come and we BOTH were really tired. So it was a long frustrating evening, but at least Dad and I had a long visit!

Steps forward

Thirty five of them, to be precise. Yesterday the physical therapist asked the nurse's help in getting Dad out of bed. In the process, they disconnected him from all his various wires and lines so they figured, what the heck, may as well go for a walk in the hall. Dad took 35 steps on his own (with a walker). He says it isn't progress until he's *really* walking on his own. Sheesh.

Today he took 48 steps down the same hall. If he keeps going, maybe he can make it out the door! ;-) Mom says his heart rate soars during these walks, but settles right back down as soon as he's back in bed. This is hard exercise for him, akin to the rest of us going for a long run, but obviously he's making progress!

His swallowing is also progressing. The speech therapist was encouraged enough by his progress to allow another barium swallow test today. He had so-so results--not a clear pass, but not a clear failure either. They've decided to allow him soft foods and thickened liquids under the supervision of the speech therapist. Yay!