A Day at the Drs.

G and I spent the entire day at Drs...and the emergency room.

Sunday night G's surgical site for the fistula busted open.

It was really ugly, but not really bleeding, and it did not hurt, and did not look infected.

I asked for him to have the nurses at dialysis look at in Monday, but they didn't.

He had Drs. appts at the VA on Tuesday, one of which was the renal Dr., and she looked at it
and said we had to get into the surgeon that day.
So I called the surgeon's office, who said he was in surgery all day, and to go to the emergcy
room.
G. had OT therapy at 1:30, which I had already rescheduled once and was not about to
cancel, so decided we would go after that. Besides, I knew the surgeons would be in
surgery until at least 3:00.

Finally around 4:30 the surgeons showed up at the emergency room (after 4 other
people looked at it...lol). They cut off some bad stuff, and resewed it.

At least we get to cancel his appointment with the surgeon on Thursday, and make
another one for 2 weeks out.

Other than that G is doing OK. He isn't in pain, which is great. OT will start soon,
and then will also look at getting PT.

Busy, busy, seeing Drs...
That is our life!
'

Great News!

Finally, some good news.

The surgeon was able to place both the catheter in the abdomen for peritoneal dialysis,
and do what he called a "good" fistula in the right arm for hemo dialysis. Both will
probably take about 6 weeks before they can be used.

G will be in the hospital for at least a couple of days, until they get his
blood thinned back to the correct level on coumadin.

At least it appears they are now taking this blood thinning thing as seriously as
they should.

So I feel much better.

And I knew G was feeling better last night, when he called me at 10:00 PM, wanting
me to bring him some food. As I was in the middle of staining some wood in the house,
I declined and suggested he get something from the nurse. They have sandwiches and
fruit cups on the floor.

He phoned back later and said he had.

I am trying to get some projects done inside the house while he was out, as I don't
think the fumes are good for him.

Well, gotta run.

G update

G was having dialysis this morning in his room. When you are in ICU they
do they dialysis there.

He said he threw up last night, the meatloaf, but otherwise feeling OK.

They will move him back to the floor when there is a room available.
Hopefully this afternoon.

The fistula surgery will be done on monday, so he will be in the hospital
all weekend, on the heparin drip.

His head (actually his neck) looks swollen, guess it could be from the surgery,
but also concerned it's from the blockages. Not only does he have blockages
in the arteries which take blood to the head, he has blockages in the veins which
allow for return of blood from the head.

I guess they will put him back on the heparin this afternoon. I will go back
up around noon, to check on how things are progressing.

One must really check everything. I overheard a long discussion (so much for
patient privacy) between a man and a social worker regarding the man's wife.
He said when she was moved the last time from the hospital to the skilled nursing
facility, they did not start her again on her coumadin, and then she got blood
clots in her legs. He described what they had been through before with getting
the coumadin adjusted, but then, apparently the Dr. or whomever just didn't order
it when she went back to the nursing home. Because of this, she ended back
up in the hospital.

So, note to everyone. Know what meds you or your loved one should be taking,
and make sure they get on the list when you are in the hospital or other care
facility, where you don't control your own meds.

Update on G

G just phoned. The results on the neck (carotid artery) for the left is not good.
Very blocked (didn't say how much)

They will talk to the vascular surgeon about doing something, which is what we
knew needed to be done, it's just that (in our opinion) the VA was waiting see
if G would die first...lol.

As we already knew, because of this blockage G is very high risk for another stroke,
which is why his blood needs to be thin.

They will also do vein mapping on his right arm, so see about a fistula. This is his
last site for a possible fistula, so fingers crossed.

No mention of the other thing in the stomach...guess we will find out more tomorrow.
At least we feel he is in the right place to get these things done.


he is B

Update on G

G did not have viral pneumonia, but he did need a pint of blood.

I got a call from his nurse about 2:30 PM after the Dr. appointment this morning saying that G had to come in to get a blood transfusion.

G wanted to do it the next day, because he had an appointment with his renal Dr. in the morning, but the nurse phoned back to tell me "if he doesn't get this blood, he might not live through the night".

Well, that scared the S out of me...so I put him in my car and drove him there myself. There had been a mix up by the wheelchair transport company and they took him home instead of to the VA....it just all gets so frustrating.

Anyway, he gets to the VA and they don't have a room ready in telemetry, where they want him so they can monitor him during the transfusion. So he hangs around for a couple of hours. Luckily my brother R is in town so I can go to the VA.
So I ask the chief Dr. (who is now taking care of G since it's the beginning of the month and all the residents have just started to work)...."so if this was so critical, why isn't anything being done?", to which he replied "well, I think they were must being a bit dramatic".

So the new Drs (residents) came in to do the history. Of course the VA is basically run by residents, and lets face it, Drs. have to learn somewhere. So G and I took a lot of time and went over his whole history, which is quite interesting. They were concerned that G was losing blood somewhere, so they sent him for a CT on the leg where they did the procedure last week.

Of course as G said, they could just look at it and see it wasn't bleeding, but, Drs. can't just look at anything these days and see what's wrong. They must have a diagnostic test. That's why G didn't get blood when he was in the hospital. He was discharged with a hemoglobin count of 7.1, and they won't transfuse less than 7But by Wed. it had dropped down to around 6. The thinking is that because of the volume of fluids they pumped into him to get his blood pressure up, somehow (I guess) this masks the true hemoglobin level.

So once again, if someone with a brain looked at him (as I did) and said "this guy is sick", and, if the Dr. who did the surgery had the guts to say "this guy lost a lot of blood during the surgery, he probably needs a transfusion", maybe they would have given him blood, like they would have in the old days before all this testing.

G pushed to get released on Thursday morning in time to make his Dr. appointment. Once again he had to irritate the nurse to get her to do her job. And, when the renal Dr. nurse came out to the waiting room she said "we thought you were in the hospital", despite the fact that the hospital nurse said she had called the renal Dr. nurse to let her know he was being released.

Now, there are some very, very good nurses at the VA. We know them. Generally they are working in the general part of the hospital. For some reason all the bad nurses have been shifted to the ICU/telemetry part, or, the nursing home.

G's renal Dr. called him at home yesterday, to tell him the VA surgeon can do the surgery he needs for access for dialysis, which is BS, the guy just forgot.
So G should see him next week, and then he will remember, and then G should be able to get a referal from the VA to the Dr. in town who can do the surgery, as that is his specialty. The VA surgeon is just a general surgeon.

G's catheter has been running slow for dialysis the last 3 times, but he took an extra pillow to sit on, and that helped. He now wants to go in the car to places, and I guess we will. If he were to die soon, it would really suck I was so careful and didn't enjoy life a little bit. And now that catheter has been in him so long, it is probably well "set".

G is feeling much better, which is good for me, because with all I am going through I can't handle him being grouchy.

That is not an option!

Today, as I was driving to the VA, I got a phone call from the case manager.

Long story short, she was under the impression G had refused medical treatment, and if he did not want continue procedures, then perhaps they would not be aggressive, and essentially, put him on "palliative care" (ie; hospice).

Well, you can imagine my reaction. Essentially I told her the Drs. just needed to try harder and do a better job, and no, I know for a fact that G had not refused medically treatment. I got a call at 5:00 AM from the incompetent nurse, telling me the same thing, so I got up and drove to the VA. What had happened was this nurse has trouble getting an IV into G (G is hard to stick), and called in another nurse, but then he also was trying, and G told him they didn't need to be trying 2 IV sites, try just one first.

Anyway, we agreed to meet. So she sat and talked with me for a while, and then she and I went into G's room, and she talked to him, which made his blood pressure go up (which was actually good as his blood pressure was low)...anyway, we are to have another meeting tomorrow with all Drs. involved to be sure we all know the plan of action going forward.

Also, the Dr. filling in for the renal Dr. came in today. We talked about all the problems getting access, and he mentioned a couple of new things they have had success with, so perhaps tomorrow he can enlighten others as to what can be done.

Not Good News on G

I will make this brief.

G had procedure yesterday to open of the vein connecting to the new fistula.
He was 7 hours on the table, surgeon put in stents, but the vein would hold for a while but then collapse.

They decided to keep G overnight as a precaution, and good thing. His blood pressure dropped dangerously low. They don't know why.

He ate breakfast this morning OK, but says when he sits up he gets lightheaded.
They will keep him again tonight.

Drs. are debating the next course of action to try and get a fistula going.

Update on G

Since I have been so busy with M, G has been left to fend for himself
in many aspects.

He had an appointment with the surgeon last Friday, to see if the new
fistula site is ready for use. Normally I would have gone with him,
but of course can't now that I am taking care of M.

G came home Friday after dialysis, a little after 3:00 and said "I screwed
up". I asked what happened and he said "The surgeon asked me how long
it had been since the surgery, and I told him 6 weeks, rather than
insisting he look it up....and I now realize it's been 6 weeks since
I saw the surgeon, not 6 weeks since the surgery".

Well, I went nuts. What kind of a *** Dr. asks a stroke victim a question
like that, especially when the VA has a good computer system.

I immediately phoned the VA to try and get G an appointment for next week, but the Dr. had put in orders for an appointment in 4 weeks (which is what he told
G, that by then the fistula should be ready...), but the appointment person
couldn't go against Drs. orders, so she sent a note to a nurse who was to call me, but as it was 3:30 on a Friday afternoon, no one did, because no one at this VA facility works after 3:30 on Friday ....believe me I have watched the exodus.

(I overhear people saying "I worked through lunch so I am taking off early...)

Anyway, when G goes to dialysis on Monday he tells them what happened, and they phone for the VA renal Dr. whom we like. She was on vacation until Tuesday, and then Wed. when G went back to dialysis they told him he had an ultrasound scheduled for 8:00 AM Thursday. G asked me to phone for transport (he always gets wheelchair transport, and good thing, with me being busy these days).
\
The company assured me they would pick him up at 7:30, but when I phoned at 7:09 the next morning to confirm, I was told "we might be a little bit late"....I am quite sure they forgot (good thing I called).

Anyway, after G left I laid down for a nap, and M didn't bother me, (amazing), so I woke up around 11:00 and wondered why G wasn't back, an ultrasound doesn't take that long. Finally a little after noon I phoned the VA and found out he was having a procedure.

Apparently they went in with a balloon to try and open up the vein, as there is not enough blood flow. G has narrow veins. He says they don't think it will work.

We haven't talk about what they will do next....

I have decided I will start giving G aspirin. Maybe it will be the wonder
drug for him also.

Ups and Downs

First for the good news. G is walking better. And, much further. He is now back to walking as far as he was before the surgery. He says his balance is better.

He is also starting to try to use the keyboard on the computer, something he has not done for some time. I think his coordination was quite bad.

Now for the bad news. The catheter for dialysis is again not running well. And, the surgeon saw G on Friday and said to come back in 6 weeks, and by then he thinks they will be able to use the new fistula site. So, this catheter has to hold out until then.

G said he would take a pillow to sit on Monday, as he hasn't done that the last week or more, as the catheter was running OK. As the catheter is in his groin area, sitting on a pillow will make the area flatter, as where he goes for dialysis they only have recliners to sit in, no beds to lie on.

So, once again, keeping fingers crossed.

Incision a little infected..??

Good thing the surgeon who knows G came in to look at the incision.

The resident looked at it initially...I showed him the 2 spots which I thought were "suspect". He said they were OK.

Then the surgeon came in, looked at the same 2 spots and said they could be a problem, and called Dr. B to have G put on a round of vancomiacin for a week. They give the vanco IV at the end of the dialysis run (which was today).

I don't think there is anything I could have done to prevent the infection - it's just a problem with G, and good thing the surgeon knows this and took action.

So, after the meeting with the surgeon, G and I had some time to kill so we went to the cafeteria and had biscuits and gravy. We eat healthy at home, so this was a treat. That, plus we don't get out much now as it's not good for G to go in a car.

That fact was also reinforced by the surgeon today, who told G to stay in his wheelchair as much as possible.

Oh, and the really good news is the surgeon could feel 2 fistulas going, so we hope in 6 weeks or so G will have a functioning fistula. Yeaahh!! Now, if only his catheter can keep running until then. It's doing fairly well so far.

Now, back to the vancomiacin. So I know the dialysis center should have the order for the Vanco by say 11:00 (the Drs. spoke around 9:15), but as I know one cannot just assume things will get done, I call. Sure enough, the nurse taking care of G at dialysis knows nothing. I make sure to call while I am still at the VA, and when I find out the dialysis nurse knows nothing, I try to get the phone number for Dr. B's nurse...but the operator won't give it to me, I go into voice mail hell, so I go to the office area.

Well, wouldn't you know it, neither Dr. B nor her nurse are around. I, looking as foreorn and and frustrated as possible, ask someone going by to help me.

Lucky for me she was nice (she is a nurse who works in Oncology, and I think anyone who works in that field has to be nice). She tracked down Dr. B., who asked the nurse to try and pull up something in the computer, but apparently there was not an order on file for this anti-biotic. So, the nurse phoned Dr. B. back, and then Dr. B said she would call Dr. C. (the Dr. at the dialysis clinic).

And, sure enough, when I check around 12:15, the clinic had the order.


It's Friday, and we just can't put this off until Monday.

Yea!! Score one for the caregiver.

Long Day

G saw the speech therapist this morning. He told me when we were eating lunch, that the therapist asked him to say words that began with S, he couldn't think of any. He did better coming up with name for fruits. I could tell this bothered him.

The the renal Dr. (Dr. B) happened to see us eating lunch and stopped by. Apparently G's catheter didn't work very well yesterday. They might have to go for a longer run if it keeps clotting up. But, I suspect that by tomorrow or Friday, it won't run at all.


I mentioned my concern with the lack of blood to his brain. She said he should be put on Plavix, so we discussed this with Dr. M., the primary Dr. He said pharmacy won't let him prescribe Plavix unless there is a stent. (I know Plavix is very, very, expensive). But I told him there is a stent, in the arm, which is when the stroke occurred. I could even remember the date, so with this information he was able to find it in the computer. I don't know it this will make any difference, and based on experience with my Mom, it really takes 2 months to clear out any blockages.

Dr. M. listened to the fistula G has in his left arm. He said the fistula is very strong. We told him that the surgeon says the site is unusable, but Dr. B. thinks maybe something could be done to open up the veins which are blocked.

I told Dr. M that I think the problem, that neither of the Drs. want to mention is if they use that fistula site, due to the blockages, it could send out a blood clot. Not necessarily to the brain, but to the lungs. This is what Dr. Z had mentioned to me (from the nursing home). I guess since Dr. Z is a geriatric dr., he is more accustom to delivering bad news.

Dr. M thought about this, mapped out the vein flow in his head, and said, OH, yea.

He did give G encouraging news about recovering from his stroke, although I think he just wants to remain positive.

Of course, if they can't get a fistula going, or a catheter to work....well, enough said.

The surgeon wrote Dr. M that he plans to do the surgery in the right leg, to do some sort of "loop", to get a fistula going there. Problem is, 2 weeks away for surgery, and then at least 6 weeks before you have a functioning fistula, if it works.

That's 8 weeks out.

Well, maybe G's kidneys will decide to start working.

A new NetFlix disk arrived in the mail today. Mad Men, so we will enjoy a nice evening watching it.

G generally spends his time watching TV shows and Movies on his computer. He is finding all kind of things to watch, NOVA, History Channel, and NetFlix recommends things he might like, most of which are now available as downloads.

At least this is how he passes the time, and I know it keeps his mind off of what the future might hold.

We don't talk about it. I am afraid if we did, I would start crying, and that's not good.