Monday, Season 2, Episode 3--Redjeb Back Home

Redjeb came home (again) today.  Yeah!
They got the infection under control (fingers crossed) but not yet "cured."  He still has to take anti-botics.  That still poses some questions, as one has to see if the particular antibiotic and dosage will work--even though they did cultures etc.

So we have added on more doctor visits and visiting nurses...and just when we thought we were through with the later.  This time if possible I will try to learn how to do the wound care (even though will be harder, as have to learn to dress the wound).  But it will free us.  But till I learn--just hope the nurses do show up cause don't know what we'll do if they don't.

Although I am very tired, will try to briefly explain a problem we had during the discharge.  We were given a prescription for a drug and told to fill it at the hospital pharmacy.  So we tried, except after some time the pharmacist said he had to talk to us...seems Redjeb's co-pay for this drug was over $1000 !   No that is not a typo.  Naturally we freaked out.  After an hour of phone calls etc we got a prescription for a different drug, and the co-pay was only $6.  We only hope this later drug is effective enough.

Now you may wonder, as we did, what is going on here.   For one thing older drugs are cheaper, and those that are now used much are more expensive.  But at the bottom of it is of course all the horse trading in Congress when they passed Medicare Part D, which is the drug coverage:  A little gift to the insurance companies called a "donut hole."  Apparently when you reach some magic limit in terms of the medication that you have used during the year and that they have paid for, you fall into a donut hole.  The hole is over $4000.  Once you have paid that sum for your meds, then apparently the insurance picks up again.  This is what we have been lead to believe, and will have to double check it tomorrow when we are more awake.

Redjeb barely takes any medications so we never had to consider this.  All we can think of is that all the meds he has taken recently during his hospital stays (including the infusions of antibiotics this time) must have caused him to fall into this hole.  Just love this US health care system, just love it.

I hope he will be on a good enough drug to kill all those lurking microbes.

I think this will be the last of my postings, enough of this health business.  We will think positively and persevere.

So this Season 2 has been short.  A mini series I guess.

Anyway we are both wiped out right now.   So I am signing off.  Bye.
Talk to you all in the real world.

Sunday: Season 2, Episodes 1 & 2 Back in hospital

Was thinking that I would have nothing to say on this posting, but alas:

Feels like we are part of a TV-like serial and a new season has begun:

Episode 1 of New Season:

Last week Redjeb's nose began to bother him, sort of sore.  He went to the doctor on Tuesday and was given antibiotics.  They didn't seem to help.  I will spare you the awful details, but he developed a very serious infection.  We were urged by a retired doctor-friend that he go to an ER and get a culture done.  NYU Medical Center Hospital is our hospital of choice and all Redjeb's doctor's are affiliated there.  So late Saturday afternoon we made our way down there.

Redjeb is now getting intravenous infusions of antibiotics and also had some very uncomfortable procedures none to drain the infection.  When they told him he would be admitted to the hospital he said no way.  I thought he was going to get up and run out of there.  He, as you can well imagine, has had his fill of hospitals etc.  But the nurse and I coaxed and there he is.  They will probably keep him at least 2 nights or maybe more.  Depends how he responds to the antibiotics.    They did cultures and that will help clarify what kinds of bacteria he has, and then they can pinpoint the proper antibiotic.  Not sure how long it will take to get that information.

I know he doesn't want to be there, but as hospitals go, it is of the best, probably in the US and maybe the world.  The staff have been wonderful and all kinds of specialists have come in to examine him etc.  It is a teaching hospital, so one expects some of that.  They ask him the same questions over and over, and of course everyone looks at his name and hears his accent, and asks him:  Where are you from?  He told the last person he wasn't going to answer, but then I encouraged him just to say France.  Usually they also get curious about his name.  I think after so many many decades of dealing with his name and accent he gets a bit tired of it.  But I confess I ask people where they are from.

But he is basically a very good pleasant patient.  And of course they are all utterly surprised when they notice his age in the chart.  Even with his infected face and his loss of weight he doesn't look or act anywhere near his age.  Maybe someone made a mistake on his birth certificate.

Given that this is a new "season" on this reality show, I will start doing some postings each evening.  I realize that now that I went to once a week some of you won't even realize this right away and Redjeb may be out of the hospital by the time you read my posts.

He has his new Kindle with him, but I'm not sure how good he is with it, but he should be able to get emails.

He's feeling well except for his sore uncomfortable nose.  But the infection is quite serious and they don't want it to spread.  And by the way, probably has nothing to do with his recent problems (except that he may have picked up some new germs).

Will do a posting each day for a while to keep you up to date.   ....and just when everything was going so well....

Sunday eve, Episode 2:
Redjeb's spirits are up but he'd like to get out tomorrow, but I am not sure that will happen.  He has been in there over the weekend and the real staff comes in on Monday.  So it is my thinking that they'd like to have a day to watch him.  Also I noted on their computer that the analysis of the cultures re which bugs he has and which antibiotics to give does not seem to be finished (or they have just not entered it).

He is able to walk around when he is not hooked up to the IV, which they do twice a day for 2 hours each time.  So this afternoon, first we went to the visitors lounge on the 16th floor (his floor).  It has windows looking out at the river and lots of light.  We hung out there for a while and then went up to the 17th floor.  That was fun cause their was an Hasidic family there and the young man, maybe 18 years old had a violin.  I had heard him playing a little earlier, so Redjeb asked him to play.  The family--even the younger ones--was very old world, and they didn't seem to want to interact with us.  I wasn't sure they even spoke English.  But the boy insisted that Redjeb take his seat and he took out his violin and stood right in front of Redjeb.  He played two Jewish pieces.  Really nice.  Could have stayed there and listened to more, but he shyly put his instrument away.  Redjeb even had to ask for the second piece.  That was one of the few times I did not have my phone (and camera) with me, as what a picture:  this young man with his two long curls framing his face, dressed in black, wearing a black top hat...and Redjeb with his nose all bandaged up!  Would have made a neat photo or video.

Afterwards, we really went AWOL.  Redjeb is doing very well, so there is no reason he should be in bed.  So we went down to the lobby, and then before long were sitting outside in front of the hospital trying to get a little of what was left of the sun.  Then Redjeb, who has not been eating much of the hospital food wanted to go down First Avenue to a deli for lox and cream cheese on a bialy.   I convinced him to stay put, and I went to get it for him.  He said it felt like he had gone on a vacation, just sitting outside.

So I shall try to get there early tomorrow, just in case they let him go.  But I think they will try to really knock this bug out of him before doing that.  We shall see.

PS.  Give a try on writing me a comment, if you are one of the people who was unable to do so before. I changed the settings, as I mentioned earlier, as wonder if it works now.

Sunday: Goodbye Brace

 The spine surgeon finally called.  He had a chance to look at the x-rays I sent him and also my letter, asking when Redjeb could take off the neck brace.  We had pretty much given up hearing from him, as he is not in his office very much; does surgery non-stop it seems.  We had today finally resigned ourselves to waiting until the scheduled appointment the second week of October.  And then the phone call at 5:30 on Friday afternoon:  Dr. Morelli gave the OK for the brace to be taken off!!  Yes, indeed.

Getting the word to take the brace off was a bit of an ordeal in-and-of itself.  I sort of remembered in early July that the surgeon had said the brace would be on for 2 months. That seemed long.  But later in the hospital people kept saying 3-4 months.  That shocked me, but then I thought maybe I hadn't heard right the first time.  In the nursing home the orthopedic doctor said they usually stayed on for 3 months.  I asked the nursing home to send their recent xrays to the surgeon Dr. Morelli and wrote him a letter asking when it could come off.  Some time went by and then I heard from his secretary that the nursing home had neglected to include the neck xray in the series they sent.  So I had to start again.

By this time we were home.  I called and requested the home send the correct xrays and also a set to me (as they had before to me).  I waited a while, and then called to see if the surgeon had gotten them and when would I hear from him.  His secretary was out sick for days.  When she got back, she told me he had not received the second set of xrays; she also told me that he would never agree to take the brace off before he said he would.  I tried to explain to her that he never really said when it would come off, and we hoped he would consider sooner than the Oct 10 appointment that she had scheduled for us on the assumption it would be 3 months.

So we agreed that I would send her a copy of the neck xray myself, which I did and with another cover  letter.  There were a few more phone calls between me and the secretary and others, and we also found out that we could not move our appointment earlier as he was all booked up till the 10th. We resigned ourselves to just wait till the 10th.  So you can see that we were surprised and delighted when Dr. Morelli called at the end of the day on Friday to say all looked good and Redjeb could remove the brace.

At first when I told Redjeb, he's like, but I don't want to take it off.  I think he was beginning to feel secure with it on or something....But off it came, Yeah!!!  Another milestone, and this one a big one.  We don't have to keep putting bandages under the brace and all that cleaning and stuff, and the nurse won't have to come anymore, etc. etc.

The doctor was surprised when I told him that Redjeb goes out by himself now, close by, to coffee shops or to sit in the sun (with his walker).  He only knew Redjeb that night of the accident and the first week in the hospital when R was in really bad shape.  Redjeb was pretty much out cold both times.  The surgery was done a week after the accident and the brace was on over 2 months.  We are still planning to keep the appointment in Hampton Bays with the surgeon in October just so he can see the results of his handiwork and to see how fit Redjeb really is.   And so onward we go.

People who visit often express surprise at how good Redjeb looks.  In fact even when he was in the hospital he looked quite good.  The big difference is that he has lost a lot of weight, so his face is thinner.  He is of course wandering around with his walker (rolater).  But basically it's Redjeb.

In the last post I mentioned our living in an accessible apartment (includes being in an elevator building).  Those of you who have known me for decades remember my 5-floor-walk-up on West 22nd Street.  Lived there most of my NYC life.  At some point we decided to move, which was partly my concern that we were getting older and may not always be able to make it up the stairs.  [Note.  1) I used to work in rehab, and also 2) I observed what happened to some of the other tenants on 22nd St who got older and had problems with the stairs, 3) I also had a patient years ago who told me he volunteered with meals-on-wheels and was taking food up to an old lady who lived in a 5-floor-walk-up and could not get down.  I got the message. ]  Anyway, sometimes it is good to be Cassandra and think of the possible disasters. So we got out of our five floor walk up years ago and are in our accessible building.  But I do miss 22nd Street.  I always liked that part of town, and now it is even better down there.  Alas, here we are on the UES--Upper East Side.

We have restarted Netflix and have gotten hooked on the French TV serial Spiral.  It is an exciting cops and gangsters thriller.  Don't watch it if you have a week stomach, however, as there are some grisly scenes.  But you can look away till they are over. That is how we are spending the recovery time, that and reading escape books.

Amazing: Another Sunday & more re comment writing

Redjeb continues to show gradual improvement. We are still here in the city.  Redjeb's overall weakness and tiredness, plus the home health care visits contribute to keeping us here.  Would have to change health care agencies if go to East Hampton at this point.

All but the nurse have done their last visits this week. We will miss the two guys (Les, the speech therapist--right out of Woody Allen, and Cristopher, the PT--warm, friendly and very talkative), but I will not miss having to wait around and wonder when they might appear.  Had a different nurse come for a visit this week.  She was to have been a wound specialist.  We didn't like her personality as well as the regular one, Anne Marie, so we are hoping we get AM back on Monday.  Funny how different people can be. The other nurse just seemed to have a chip on her shoulder as they say.  Redjeb is having a reaction and some skin breakdown under the brace.  Also the trach is not healing as fast as we had been lead to believe it should.  So the nurses are working on this.  It has been said that I should be doing the nursing tasks...this is very annoying to me. There is insurance coverage.  Wonder if it is sexist. Would they be dumping all this on a male? Also, really upsets me that those professionals out there just think that I am supposed to be doing everything.  You can do this, you do that.  Just who do they think they are....etc etc etc....and some swear words ##*!!#!

Redjeb went to see two doctors this week.  Getting to them by cab was not bad but coming back was horrible both days.  Taxis would avoid us because they would see Redjeb's walker and not want to stop to put it in the trunk.  They would be pulling toward me and then zoom away when they'd see Redjeb approaching. One guy even locked his doors when I tried to get in.  On top of that the Third Avenue buses are terrible, they hardly run, particularly the local which when we finally get on it stops right in front of our apartment building.  It took an hour to get back and those were the hot days.  Redjeb was exhausted for 2 days afterwards.

The doctors gave him just general look over followups, and all was as well as could be expected.  The important upcoming appointment will be with the neck surgeon, who is out on Long Island and not easy to get to, particularly from NYC.  We have an appointment to see him on Oct 10, but have a call in to him to see if he could see Redjeb sooner and be willing to take off the brace sooner.  That would be helpful in so many ways.  We could do away with the nurse (or my having to learn how to do what she does), and also it might help his eating, etc.  But depends if the doctor thinks his neck has healed enough.  I hope he calls early next week to let us know if we can have an earlier appointment for its removal.  Once we know for sure when that date will be, then we will go out to East Hampton just before that.

In the meantime NYC is working out just fine.  Although our little apartment is cluttered and cramped, being in Manhattan means that everything is so convenient.  Redjeb can walk (with his walker), right downstairs, to a coffee shop, drugstore, post office, deli, store, bank.  In EH we would have to jump into the car and make a thing out of it, and of course the exercise of walking would be more limited. Today I am trying to encourage him to get a move on and try a new coffee shop down the hill on Second Avenue.

By the way, for those of you who don't know Manhattan, we actually have some pretty steep hills in parts.  I was very pleased when moving into our current apartment many years ago, that the building and apartment are accessible for wheelchairs.  But I never thought about the hill.  Our building sits near the top of this fairly steep hill.  Even the little walk to the top from our door can be difficult when a person is recovering from surgery or whatever.  But Redjeb is already not only going to Third Ave on the top, but almost from the beginning of getting home, he has been making his way all the way to the bottom and even able to come back up from Second Ave.  He has had to stop a few times to rest, but yesterday made it up with only one stop.  These are the little milestones that he reaches each day.

Always happy to see friends to break up our routine, such as it is.  I unfortunately was under the weather one eve last week when friends stopped by.  Felt funny for me to be the sick one.  Fortunately I think it was just something that I may have eaten, as didn't last long.  Redjeb even took care of me, going down to the drugstore to pick up some Ginger Ale, a remedy from my childhood for what ails you.  Colds are going around, so delay your visit if you feel achy or are sniffly.

Today there is a street fair on Lexington (one block from us), so that will be our outing.

P.S.  A little late in finding this out, but I just figured out why most of you have been having problems contributing comments.  There was a setting that I didn't know about that stopped you from doing so unless you were "registered."  I have changed that now, so making comments should be easier (except I allowed one of those things that makes you copy crazy letters).   If that is a hindrance I can get rid of that too.  All this to say, it is a bit late in the game for your enthusiastic supportive comments, but live and learn.

Sunday: ...a pound of peaches in Pittsburgh

Another week has passed.  We are still in NYC and probably staying here through the month, though we miss East Hampton.  But it is so convenient here just running out to stores, the drugstore, the post office, restaurants, etc. And of course NYC is a good place to people watch. But the apartment is small and gets a little claustrophobic.  

Days are filled with urging Redjeb to do his exercises (legs, arms, swallowing/throat muscle strengthening  (which involves yelling out sounds and funny sentences, e.g., Perry paid for a pound of peaches in Pittsburgh.)  Our days are scheduled around so-called appointments from the physical therapist, the speech therapist (for the throat exercises), and the nurse.  I say "so-called" cause they give a range of time, usually two hours, when they might arrive, but frequently surprise us by arriving one or two hours earlier.  Twice we almost missed the person, as we would be sitting outside getting some sun and not expecting the professional to come early.  Today was an example.  The nurse called in the morning to say she would be here between 2 and 4 pm.  So about noon we went out for some exercise and fresh air.  She called about 1:20 pm and left a message that she was outside our door ringing the bell and we weren't home.  Fortunately she called back about an hour later, and did come by.  Another day she actually arrived 2 hours early, but fortunately Redjeb was here. Typical.

But not to be to hard on these professional folks, as they are never sure how long an appointment will take and are dependent upon public transportation that is not itself always predictable re time.  And all three of them are very nice people.

So this is why we often can't tell you when is a good time to come by.  Redjeb has these so-called appointments that are floating.  But I know that he enjoys seeing friends, whether you stay for just an hour or a few.  And of course I do too.  So I usually just tell people, give me the time when you might come by, call before you leave home, and call again when you get to our building.  The first is to let you know if we hope to be available, the second is to let you know if there have been changes, and the third is to let you know if we are outside getting fresh air or are in the apartment.

Should also add that some of you have said that you put comments on the blog, but I haven’t seen them. You should check after you think you have posted one.  If you don’t see it under my posting, then you didn’t do it right.  There are more people who think they’ve written comments than comments that are appearing.  That’s ok, an email, card, or whatever is fine too, though I know is fun to put a comment immediately when you have the impulse.

Just for your info, in addition to the Homecare people, Redjeb has two doctors’ appointments this week, Wednesday and Thursday, which will take us away for a while.  Thinking of this, I realize that traveling to these appointments will be a first for him, going so far that is.  I assumed we would go by taxi or car service.  Redjeb is announcing that he wants to go by bus.  I’m not sure he is up to that, but actually in many ways the buses are more equipped to handle his walker with the wheels and seat (is a bit big), so maybe he is right.  I hope he has the stamina.

He did not have his Eggs Benedict yet, as says he can’t eat that much yet.  But he does get himself to a little coffee shop/bakery that is a couple blocks from here.  He still has to stop along the way and sit on his walker seat a couple times, but he does get there.  And today was a first:  he walked to 85th Street from our place on 90th (with some stops).  But he got there.  That is good cause his favorite haunt is there:  Barnes & Noble.  There is also a good place for croissant down that way.  Things are certainly looking up.

So we are hanging in there.  Not getting on each other’s nerves too much.  I can’t be in-charge-bossy anymore since he is no longer sedated.  He has a mind of his own.

Till next Sunday….

Sunday: The Beginning of the Weekly Blogs

So it's Labor Day weekend, the end of the summer that wasn't.  Figure that Redjeb was in the hospital through July and part of Aug and then the nursing home till Aug 28.  All this is unreal.

I sat down last eve to write the blog and just couldn't bring myself to say anything in particular, so signed off.  Then of course I thought of things, but now forgot again.  But I have decided that starting today I am not doing daily blogs:  I shall do a blog each Sunday in September and then re-evaluate.

Somehow the days are busy, just getting dressed, making and eating meals.  Redjeb took a shower of sorts using the new tub bench.  It seems to work well.  Yesterday his daughter Nicole went down to Virginia to be with her sister, who is baby-sitting the grandson.  Then she and the little one go back to Georgia this week.   Friends came by this afternoon and evening, which was quite pleasant and of course interesting (since all you, our friends out there, are of course smart and interesting).

Redjeb has been getting outside.  He takes his rolator or whatever it's call:  a walker with a seat.  He goes out to the 91st Street side of our building, which is a pedestrian walkway and sits there or down to the park further down the street.  This is all on a pretty steep hill, but he manages.  He can only go about 15 feet and then has to sit down for a spell.  But he makes it.  Told me today his goal is to get to a small restaurant  a few blocks away and have eggs benedict.  So he is exercising for that trip.

Even though it's Labor Day weekend, the physical therapist came on Saturday, and the Speech Therapist is to come tomorrow afternoon,  Labor Day Monday.  Then as the week goes on they all return as does the nurse and maybe an Aid.  I'm not so sure about how helpful having an Aid will be, but will give it a try.

Redjeb ate much more today, which I was happy to see.  We are trying to find foods that he can eat that are also pleasing to the eye and tasty.  So for breakfast we had smoked salmon and cream cheese:  typical New York breakfast.  He ate a nice lunch too, slacked off a bit in the eve.  But still all in all was good.

Some of you have asked what he can eat, so you can bring something.  Is hard to say.  I looked up "soft diet for swallowing problems" on Google and read some articles. Not sure where it leaves us.  Some good foods would be fish, pureed vegetable soup (on the thick side),  steamed vegetables,  flan, creme brulee (though he's staying away from sweets as too much was sweetened in the nursing home & hospital.) I bought the ingredients for a beef stew.  He will skip the beef part, but it will flavor the stew and give it some nutrients.   Now that I read what I have just written is probably hard for you to bring food.

But he is getting back into reading as I think I mentioned before:  spy and detective stories, science fiction, historical novels.  He has a new Kindle so he can now download but he does like to hold a real book in his hands.  We are also going to start up Netflix again, but if you have a CD of a really good movie we could perhaps watch that.  But in reality just coming to visit is enough.  We both enjoy seeing our friends and getting back in touch with what is going on in people's lives and in the world.  Our own world has become too narrow.  The country is about to go to war again, and it seems to belong to a different universe. One thing I would add to the visits is don't kiss us hello and goodbye, as is probably best that we avoid getting "germs" for a while.  Sounds silly but just thought I'd add this precaution.

I like to hear about good movies, so I can see them maybe and then tell the stories to Redjeb, or maybe watch them on Netflix, when we finally get our act together to restart it again.

So I shall say adieu for now.  Tune in next Sunday--or Monday in case I get the blog done on the late side.