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Old 5th August 2008, 06:13 AM   #1
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Exclamation RSLancastr - Progress and news

Hello, Everyone.

I just wanted you to know that my hubby will be out of commission for a while. Robert suffered a stroke last night (8/4). Some bleeding showed up in the cat scan, and it's in an inoperable place - dead center in the brain. The good news is that it is draining somewhat into the spinal cord. The stroke has left him paralyzed on the left side - the blood is mostly on the right side of the brain.

Right now we are in a "wait and see" phase. He is in CCU at a local hospital, and I'm told he'll likely be there a week. (Before anyone asks, no - he can't have flowers in the CCU.) He may go on from there to a rehabilitation facility where he may learn how to get the strength back on his left side. That, however, is too far down the road to think about now. There will be another cat scan to see if he is still bleeding or if it has stopped.

I will try to keep you posted on his progress, but news from me may be slow in coming. Please think good thoughts or pray if you are of the mind to. God bless you all.

Susan


Edit: Please read on. As of 8/11, there has been some progress. Robert is doing better.

Darat: Please do not reply to this thread, if you have any messages for Susan or Robert you can post then in this thread: http://www.internationalskeptics.com...d.php?t=120378
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Last edited by Darat; 13th August 2008 at 11:44 PM.
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Old 7th August 2008, 07:18 AM   #2
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Good morning.

I wish I had more to tell you. I believe I will just give you the possitives:

He sought out, found and squeezed my hand, all the while with his eyes closed. Two separate nurses (both male) told me that he can hear me, and that Robert is respnsive but you have to be insistant and loud to get his attention. His son spent some quality time with him yesterday, recalling his favorite "Dad" stories. His eldest daughter, the one who gave up her daughter in an open adoption, came down from Oregon yesterday. He squeezed her hand as well. His eldest sister came in last night and we will see her this morning. My church and his mom's church have prayer chains going. Our family is receiving such an outpouring of love and support that it brings us to tears.

God bless you all (whether you want it or not). I love you. I'll try to give you another update tonight.

Susan
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Old 8th August 2008, 11:02 PM   #3
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HEY! HEY! HEY! HEY!

Do I have your attention? Well, for the first time we have a better understanding of what's been going on, what is to come in the immediate future, and what we have to look forward to. One of the doctors began at the beginning and went all the way into his prognosis. Finally.

The slight difference between the first and second cat scans was not a bad turn. It actually meant there was "no change." The millimeter more blood that showed up in the second was seepage from the original bleed, not new bleeding. The third cat scan done today shows "no change" again. This isn't necessarily bad news. It means there has been no further bleeding, which is good news. Everything he's going through is "expected."

The doctor says Robert will be in the hospital for weeks. The doctor expects him to wake up next week - the week after at the latest. He'll likely be in rehab weeks to months. BUT THEN HE WILL COME HOME!!!!!!

The location of the damage is not expected to affect what we know of as "Robert." His sense of humor, the way he thinks, communicates, reasons, will be the same as it always has been. This got me to thinking . . . so, what if he remains on disability for the rest of his life? What if he can never return to computer programming? What will he do?

HEY SYLVIA, JOHN, JAMES, BENNY, PETER, KEVIN, ETC - ARE YOU LISTENING? IF ROBERT LANCASTER DOES NOT RETURN TO A 40-HR WORK WEEK, IT WILL MEAN HE'LL HAVE MORE TIME TO COME AFTER YOU! Maybe you should be praying alongside all of those praying for a full recovery!

Forumites, the Lancaster clan is ever so grateful for, and a bit overwhelmed by, the outpouring of love for Robert. His mother especially wanted me to express her gratitude to you all.

Good things are coming. They will take some time to get here, but they are coming.

Much love,
Susan
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Old 10th August 2008, 05:37 PM   #4
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I wasn't expecting to be updating you again so soon, but there has been a small but significant event. Robert opened his baby-blue eyes today. The nurse told me when I first got in that he had taken her hand and squeezed it. She said he tried to open his eyes, but could not. This was something that she and I both counted as a huge step towards waking up. When she left the room, I asked Robert to take my hand and he reached out and grabbed it.

Later, our friend Neil, the one who married us, came by. He saw Robert, talked to him a bit, then came to the waiting room where I was having my lunch. After some chatting, I asked if he would try to get Robert to move his big toe or something, as the neurosurgeon had suggested. He was all too happy to be of help, so we went together back to Robert's room. We talked about starting with his big toe on his right foot while at the foot of the bed. I went up to Robert's face and said hello and told him Neil was there. His eyelids started to flicker. Before Neil had a chance to say anything, Robert opened his eyes ever so slightly. I squealed with delight, so he did it again. Then I told him that was quite an accomplishment and to go back to sleep, which he did. I have a witness! I told his nurse and she was ecstatic!

A short time later, I sat down with his "primary" doctor. I excitedly told him what had happened, and he said not to "make too much of it." He's a real wet blanket! Then he told me that Robert now has a feeding tube up his nose. I had noticed that. He wanted to take it out and put one at his belly. He said it would be more comfortable. I agreed. He talked about taking Robert off the ventilator and putting in a traec (sp?). I agreed for many reasons. He also talked about a "pick line," which would remain in his arm and they could give him medications through it that would go straight into the blood stream or take blood for testing without jabbing him with needles over and over again. Since Robert is deathly afraid of needles, I wholeheartedly agreed! This will all take place this week. If he wakes up and can breathe fine on his own, and he can swallow OK, they may not do the traec. The doctor thought it would have to be done, though. After he wakes up, and the feeding tube is in his belly, he will still be able to eat by mouth if he is able to swallow.

So, now "things" are beginning. Here we go. The beginning of a long haul. All I have to say is "YAY!"

Much love to All!
Susan
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Old 11th August 2008, 09:22 AM   #5
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Good Morning, Everyone!

My name is Janie Lancaster-Busch and I am Robert's Beeg Seestor!

I just wanted to say THANK YOU to everyone who is thinking of my baby brother and offering support. Our entire family appreciates it. I am also grateful to see the support and wonderful encouragement given to Susan. As you can imagine, as hard as this is on the rest of the family, it is especially hard on RSL's Better Half (a description we all agree with, by the way!)

I wish all of you could have seen the look on Susan's face when she and Neal came back to the waiting room after the "eye incident"! We were getting worried about her ....she was so tired and worried she looked like she had been hit by a Mack truck! But after seeing RSL's baby-blues she was on cloud nine and it was a wonderful thing to see!

I woke up with a sore throat this morning, so I won't be able to see Robert today. I'm hoping it is just an alergic reaction to something but I want to make sure first. I will be here until next Monday night when I will head back to East Tennessee so I plan on spending tons of time torturing Robert with memories of him from our childhood (like when he drove us all crazy while learning to play the violin! Ouch!)

Thanks again to one and all!

RSL's Beeg Seestor

(And in case you are wondering ...Beeg Seestor (aka Big Sister) came from RSL. He is now, of course, Leetle Brotherness.)
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Last edited by RSL's better half; 11th August 2008 at 09:25 AM. Reason: Oops! Unlike RSL, I am computer impaired. I did not realize this would post as being from Susan. Sorry!
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Old 12th August 2008, 07:46 AM   #6
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Exclamation

Hi, Y'all.

What a roller coaster of a week it has been. From almost the worst news ever to jubilation over the smallest things.

So, today the feeding tube gets changed from the nose to the belly. Man! It's amazing what doctors can do these days! This whole thing sounds unobtrusive and so much more comfortable.

The pick line cannot be done, because the operating table is not big enough to hold Robert. So, they will put one of those things up on his shoulder or neck - like a shunt, I think. That won't be so comfortable, but better than being poked over and over with needles!

Still no word on when the traec will be done. But we still have some time.

I'm off to the hospital now. Love to all. God bless!

Susan
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Old 12th August 2008, 08:13 PM   #7
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Another update:

Today Robert got his belly tube. It's working out nicely so far.

Tonight, the nurses had been instructed to shave off his beard in anticipation of the thingy that will be up between his neck and shoulder for IVs and drawing of blood. The nurse in charge of the shift said "No way!" and just trimmed the beard enough as to not interfere or cause infection. Robert was not happy when he heard what they were doing! He's had that beard at least 25 maybe 30 years! When they were done, they loosened his restraint (he kept trying to pull things out) and allowed him to feel that his beard was still indeed there. He lifted his arm up and touched his beard all on his own.

Janie was there when he was being "trimmed." She kept the trimmings (in a baggie marked "Biohazard waste") so she could put some of it in a remembrance book for him. She got to see him open his eyes and lift his arm to touch his face. It made her feel pretty good.

Thank God - and Science - for small favors!

Good night.
Susan
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Old 13th August 2008, 07:14 PM   #8
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Hi Forumites!

Well, today was another good day. I arrived at the hospital at 8:30 this morning and Robert appeared to be sleeping comfortably. I decided not to wake him because I knew his mom and seestor Janie would arrive by noon, Jim was coming back up from San Diego just to see his baby brother's baby blue eyes, and Trish would be here after work. The neck-thingy was supposed to be some time today as well, so I figured he was going to have a full day.

They took him away at about 4 pm for another ct scan, but not before he allowed Janie and Jim to see his baby blues. Mom was under the weather, so did not come today. As of 6 pm they still had not done the neck-thingy. Maybe they needed the results of the ct scan before doing the procedure, I don't know. I will demand answers tomorrow.

Before I left, I spent several minutes (maybe 20) alone with Robert. His right eye was about half open and his left was open just a slit the whole time. He was looking around, appearing to assess everything around him, including me. He still has the ventilator, so he can't even try to talk. But he held my hand and squeezed it many times. He squeezed Jim's hand as well, which pleased Jim. He also held hands with his best buddy, John, today - which made John a little uncomfortable. They don't hold hands, you see. But it's the only way Robert can express his gratitude to people.

So, a little more alert for a longer period. Waking up is a tough job! He seems to be having a little difficulty swallowing. Luckily he is on a continuous feed directly into his tummy. But saliva is difficult for him to manage, so they suction still. And he doesn't like that at all.

Slightly better than yesterday. I'll take slightly better. That's fine with me.

Much love,
Susan
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Old 14th August 2008, 09:38 PM   #9
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Oh, how I do love reading these posts. Lurkers, bless you! Regular posters, you are the best of the best people ever.

Well, tiny improvements every day. It's going to be a long haul. He keeps his eye/eyes open longer. He squeezes my hand. He's still paralyzed on the left side, but I have hope that will change eventually. Edit: he is being weaned off the ventilator. It should be removed tomorrow or Saturday. Janie has started a board for him to use when he's able. The doctors are getting nods yes or no from him. Honestly, I think he has surprised them!
So, another day of life checked off. And we go on. It's been 10 days now. Months - years to go. But I love him, and I know he loves me. We'll get through it.

Good night, All. I'll post more tomorrow.

Love,
Susan
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Old 15th August 2008, 08:46 PM   #10
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Hi again, JREFers!

Some good news to report:
I spoke with the neurologist this morning, who was the one who ordered the CT scan a couple days ago. He was extremely positive! We talked about the weaning from the ventilator, the possibility of the traec, that the tummy tube is working out well, that Robert is more responsive, and then we got down to the CT. The blood has lessened a tiny bit. This means it has begun to be absorbed by the brain. The brain has shifted to the left about 8 mil due to the blood taking up room in the skull and the swelling on the right side of the brain. I asked what the shift means, wondering if it would cause more damage. He said that, at this time, he didn't think so. It just means it has "shifted," and he has instructed me not to worry about it. I must say that he sounded pleasantly surprised that Robert was awake already. But we have been cautioned that he could, at any time, go back to sleep for a few days.

I can tell you that when I arrived this morning, Robert was awake, and immediately opened both eyes, wider than before, when he heard my voice. He blinks a lot, but those baby blues are a wonderful sight! He knows who I am. He knew Janie when she showed up later. Recognition was all over his face. Trish came in about lunch time, and I think he opened his eyes for her, too, but I'm not sure. It was about that time I went to talk to the neurologist on the phone.

Later in the afternoon, when we were alone, Robert was able to communicate to me that he was irritated by the pulse monitor that had been placed on his right middle finger. It took a while for his nurse to come, and he was not happy about it. She switched it to the left and he settled down.

Just before I left, his Pulminologist came in. I know he told me this before, but it didn't sink in until today: the ventilator was never intended to help with his breathing. When stroke patients are in the "sleeping" stage, they can't control their own "juices." Sometimes, saliva will go into the lungs and cause a problem due to bacteria. Or, he could choke on it. So, the ventilator was meant to suction out his saliva from his mouth and brachia (sp?). This doctor also told me that the 2-week window on the ventilator is not "written in a Bible." If Robert continues to become more and more aware, and he appears to need a few more days on the ventilator, he could go for 16-17 days with no problem. This doctor would like to spare him the traec if possible. As he put it, "Why poke a hole in someone if it isn't absolutely necessary?" Uh, I agree.

And so ends day #11. More "wait and see," but more and more progress. God bless you all, and good night.

Hugs and kisses,
Susan
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Old 16th August 2008, 08:42 PM   #11
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Hello again.

Well, I allowed the resp. tech. to get my hopes up that Robert might go off the ventilator today. Apparently, he didn't know the real reason Robert was on it (for suction, not breathing). Hopes were up and then dashed when the pulminologist reminded me what he said yesterday. I went, "Oh yeah." I felt rather small. Another couple days yet. Then we'll see. Wait and see. This is so hard, and it's only the beginning.

The good news is that he was more or less alert all day today. He would keep his eyes open as long as he could, and then close them for a while but I could tell he was still awake - eye movement under the lid, and he kept moving his right leg like he was exercising it. I gave him a good foot massage on both feet. He seems to like that.

I went to the P.O. box today and there was one card. Thanks, Grayman and the Mrs. I read it to him, and showed him a couple from a few days ago. I think I'll take a book to read to him tomorrow. If he's going to stay awake so long, I want to fill that time with something other than thoughts of being sick. I asked him today if he could believe that I can't think of anything to talk about. He just looked at me . . . with those beautiful baby blues!

12 days down.

Good night.
Susan
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Old 17th August 2008, 08:45 PM   #12
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Day 13.

I went to church this morning (love poured over me), so I didn't get into the hospital until about 10:30. Robert was wide-eyed awake. He is now coughing quite a bit - which means his normal reflexes protecting his airway are working! One step closer to getting the ventilator out. Except that it's a pretty scary thing to watch! His whole body, and in turn, the whole bed, shakes. It is NOT a pleasing experience for him, either. If he does it more than once in, say, a 5-minute period, I ask a nurse or resp. person to suction his mouth and throat, then he settles down again. But he usually does it, like, once in an hour or two.

He had lots of visitors today. My co-worker, Linda, came by and visited, then took me to lunch. Mom, Janie and Trish came by after lunch. Robert's second daughter visited, too. I forgot to mention that his son visited yesterday. It is extremely important to Robert's recovery that his kids visit him, so I was very glad to see both. Then my friend Becky came by. We also had a visit from his primary doctor, who said they would evaluate Robert tomorrow to see if he's ready to be taken off the vent. He ordered blood, urine, and mucus tests.

I can't get in to see Robert between 7 & 8 am, so I'll be there at 8 am and will stay till 10 am tomorrow (Monday). I will go to work for 4 hours, then go back to the hospital. I need the distraction. I have become obsessed with "being there." I'll see how I do. I may just work half time this week, then go to full time next week. My employer has been very understanding through all this. But I have to go back full time sooner or later.

Robert's primary doctor also said that he is "doing great." This from a guy who was pretty gloomy a week or so ago. He said if Robert doesn't do well when the vent is removed, they will do the traech, which means the rest of his beard must go. I heard today that he's had a beard since 1981! Oh well. It will grow back. Small price to pay, I say!

Good night. Bless you all.

Love, Susan
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Old 18th August 2008, 08:15 PM   #13
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Two weeks in.

Robert had a rough night. His blood pressure plummeted, and they had to actually put him on medication to RAISE his blood pressure, if you can imagine that! He was taken off that medication about midday, and was not given anything to lower his BP all day long. As far as I know, his BP is still stable with no meds whatsoever.

When I got in this morning, his breathing was extremely labored. The ventilator was set at CPAP level (the lowest), so they raised it a bit (from 2 to 10) and he settled down. I spoke to his primary to get his opinion about vent vs. traech. He said there are advantages both ways. The biggest advantage with the vent is that they can easily suction fluids. The advantages with the traech (and I'm still not sure of the spelling here, forgive me) are that it would be more comfortable for Robert and he'd have a wider air passage, less chance of fluid blockage. However, they cannot suction as easily with a traech.

I believe Robert is sick and tired of the vent. However, on the advice of my sil, Trish, I will leave the decision of vent vs. traech to the pulminologist. He has had a lot more education and experience than I!

The primary told me that what Robert has been doing since a week ago yesterday is highly unusual. He woke up earlier than expected (yes, he really did say that) and has been progressively getting better. After last night, "he should not be where he is today" - resting comfortably with BP controlling itself. But he appears to be fine now. Dr. Sudan was clearly flabbergasted.

You all know I am a Christian, so what I am about to say should not surprise, shock, or upset you. I believe Robert is still here by the power of Prayer and Science. When men of Science are astounded, I believe God has worked another miracle. Argue all you want, you will never change my mind on that.

Bye-bye to Beeg Seestor, Janie, who heads back to TN tonight. She will monitor the threads from home. She is completing the scrapbook for Robert from home, but she gave me his beard clippings because she didn't think the airline would allow a bag marked "Biohazard" on the plane. I'll put them in the book when she is finished with it and sends it to us.

Good night and God bless.
Love, Susan
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Old 19th August 2008, 09:08 PM   #14
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Short post tonight. I want to get back to the hospital.

Robert has been having breathing issues for two days now. His breathing is extremely labored. He is sleeping a lot again. The doctors are too freaking "busy" to fill me in on what's going on, so I am going to the patients' advocate tomorrow and see if I can't get some help.

I left early today because I was so tired. Then I got home and could not get to sleep. Now it's 6 hours (and several phone calls from people wanting updates I can't give) later and I'm going to go back there. I'll tell you more about my reason later. Sorry to be so mysterious. But I did want to post something.

More later.
Susan
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Old 19th August 2008, 11:47 PM   #15
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Update to tonight's update:

Man, I'm really tired.

OK. I heard from two people today that Robert's breathing problem might be related to the morphine he was being given on the night shift. I walked in on the night crew for the first time this evening. I'm usually there all day. I have been there at night, but left quickly for one reason or another (once I was kicked out). I had never met Eugene before - he is Robert's nurse tonight.

First, I made note of the medications in the IVs. Dextrose. Formula on continuous feed. And one of the "cillan" antibiodics (I didn't think it important at the time to right down the name, it was obviously antibiodic) - probably for his recurring fever. I confirmed with Eugene, the nurse, that these were all Robert was on. Then he said they sometimes sedate him with Ativan, or morphine if that doesn't work. I witnessed Robert's right arm moving about more so than during the day. According to Eugene, he is active at night. I guess his inner clock hasn't changed. My night owl.

I asked Eugene who ordered the morphine. He said it and the Ativan are a "standing order." That means the primary doctor probably ordered it. Something I will discuss with him.

Robert had a chest xray in his room (portable xray machine - first time I've seen one) today, then was taken for a ct scan about lunchtime. I asked Eugene to check the chart and confirm for me who ordered each. He didn't need to check the chart. The pulminologist ordered the chest xray (because of the labored breathing), and the neurologist ordered the ct. I then told Eugene how difficult the neurologist is to get ahold of and that he seldom returns calls. He said I need to be there between 6 and 7 am to catch him, so I'll be there tomorrow morning. He then said, "Don't quote me but . . . the ct shows slight improvement. You need to talk to the neurologist, though."

Then I asked who was on duty Sunday night and he said he was. I asked him to describe what happened and he told me the same story I heard from the primary doctor - After a bm, Robert's heart rate shot up and the bp plummeted. Eugene called the primary dr., who ordered dopamine to bring the bp up again. Robert has not been on any bp meds since yesterday afternoon when his day nurse took him off the dopamine. His bp got a bit low a few times today, but it is mostly in the "normal range."

Prior to this incident, Eugene had given Robert Ativan to try to sedate him. Here's the reason I'm putting so much detail here: Does anyone know anything about allergic reactions to Ativan? Eugene also pointed out to me a rash on Robert's right arm, just above the bp cuff, as a sort of "aside," well before he started talking about the Ativan/morphine standing order. Could that be related? This is another thing I will ask his primary dr.

Robert was being weaned from the ventilator. He was doing very well. Eugene now tells me the breathing problem started because Robert was being weaned too quickly - "he wasn't ready." To my recollection, Robert was on the "CPAP" mode all day Sunday. Could it have suddenly been a problem that night? This is something I will ask his pulminologist.

I spoke to Eugene about the fact that Robert jerks his left leg when his foot is tickled. He tried to tell me Robert has never moved his leg during the many baths he has given him. I asked, "Have you tried to tickle him?" He then tried. Robert moved his big toe. He tried again, and Robert jerked his leg. He was surprised, and said it looked like something therapists would certainly be able to work with. Something I will discuss with the elusive neurologist.

To sum up - it would appear that the news is good as far as the stroke is concerned. Now we need to find out what exactly caused the incident Sunday night, and if Eugene's opinion that it was too soon to wean him off the ventilator is correct. As for the bm, he had been on formula a couple days and had only had one small bm during the day Sunday, according to Eugene. But would that cause the bp to plummet and the heart rate to shoot up? Not sure who I need to ask this one, but I'll start with the primary dr.

I waited all day for three doctors to stop in to see Robert or to call me. None did. This will change beginning tomorrow. You don't want to piss me off.

I'm off to bed now. Gotta get up early. Nite, All.

Susan
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Old 20th August 2008, 09:29 PM   #16
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Hi, Everyone.

For those who want an update, I'm about to give one to you. To those who are offended by this thread but are still reading it, quick! Turn down the volume and turn your head away from the screen! Sheesh.

Robert was still having trouble breathing this morning when I arrived at 6 am. I saw the elusive neurologist at 6:45, and he ran down everything for me, answering all my questions in his monologue. Neurologically, Robert is doing well. The latest ct showed a slight change for the better. He was concerned about Robert's breathing. He mentioned the trach. It is his opinion that Robert will be more alert, plus this would give us the oportunity to find out how well he can talk. He wants Robert to have more stimulation. I asked about the reflex after being tickled. He said reflexes are in a different part of the brain. Robert still has nerves that allow him to feel someone touching him on the left side, as well. His brain just is not able (at this time) to send the signal saying "move your left leg," or "move your left pinky finger." He said that anything could happen with rehab, though. Not that it will, just that it could.

I stuck around till the afternoon, waiting for the primary dr. He and I talked plainly. If I am willing to give him 24 hours after a test is done to give me the results, he will try to coordinate better with the other drs. I agreed. He knew nothing about the standing order for Ativan or morphine, but he agreed that Robert did not need either. He rescinded the standing order. I showed him the rash on Robert's right arm, and he had a nurse take care of it (it's a heat or sweat rash). I told him Robert's head, for the last several days, works it's way over to the left until the left cheek is touching the pillow. So, if someone is standing on his right, holding hands with him, they can't see his face and he can't see them. He had a nurse prop his head to keep it pointed more toward the right. Small victories.

I ran errands after that (picked up more mail and a stuffed baby Koala from Australia). I went home and rested (by getting on the forum), until the time window when I could catch the pulminologist when he paid his visit. When I walked into Robert's room, he was breathing normally - well, as normal as you can breathe with a tube shoved down your throat. Robert did all his tricks for the dr. without opening his eyes. I told him the neurologist's opinion on the trach. We discussed it at great length. It is reversible, the hole will close up leaving a little scar - which would likely be covered by Robert's brand-spanking new beard. It is "six to one, half-dozen to the other," but Robert will be more comfortable with it than the tube. So, he will talk to the primary, and we'll go from there.

When the dr. left the room, Robert reached out his hand, laid it on my shoulder and gave me a little shoove. I talked to him a little longer, and he did it again. The nurse saw it and said "He's telling you to go home and get some rest!" So, I did what I was told!

So ends day 16 . . . I think?
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Old 21st August 2008, 10:32 PM   #17
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Not too much to report tonight.

I saw the Neurologist again this morning - this time at the decent hour of 9 am! He really is a nice fella.

I worked 4 hours today. Will work 4 hours tomorrow. If all goes well, I will go back full time next week. So I sat with Robert from 8 - 9:30, I think.

After work (from 9:45 till 1:45), I picked up a package and a few cards at the P.O. box - I got oatmeal cookies . . . mmmm! One of the cards was as home made as the cookies. When I opened it, a siren went off that startled me, and then I had to laugh at myself. I'm glad I opened it in the car and not at the hospital! Robert will see it later. Thank you, Card-sender - you know who you are. I got a kick out of it, and Robert will, too. I have been showing and reading cards to him as we receive them, but this one will have to wait just a little while.

Well, Robert's nurse called a few minutes ago and told me the trach will be done tomorrow, we just don't know what time yet. I will be looking forward to that.

I bought a wonderfully illustrated book about the human body today. I'm starting with the stuff about the brain and will work my way into the rest.

Mom and Trish came to see Robert. I had good company at dinner.

I'm off to bed now. God bless you all. And, thank you, Mr. Randi, for providing me with a place to put my thoughts and emotions, and for filling that place with such wonderful, caring people. More tomorrow.

Hugs and kisses, Susan
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Old 22nd August 2008, 07:43 PM   #18
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Good evening, Everybody - or morning!

Robert has his trach now. It was a pleasure watching him sleep tonight. He still has the ventilator hooked up at the trach, but he was moving around the way he usually does in his sleep. It was so obvious that this is more comfortable. They will now slowly wean him off the machine. They have much more time now.

His primary dr., Sudan, came in and caught me watching Robert intently. He put an arm around me and gave me a little squeeze. I said that Robert looked so much better now and he said that he is much more comfortable. He was concerned that Robert may wake up during the night and have some pain from the surgery, so he put morphine back on the chart on an "as needed for pain" basis. He gave Robert a once-over, then patted my arm, waited to see if I had any questions, then went about his business. He has never touched me before. I think our talk helped. Plus, he's getting used to me, I think.

The nurses have been informing me whenever they give Robert any medication as to what it is and how much and what it's for. At least while I am sitting there, they don't call me and tell me when I'm not there, and I don't necessarily want them to - they call me for the bigger things like, he's out of surgery and back in the room. I saw Sudan talking to them like a teacher with his students when I left, and I assumed he was telling them about the proper care of the trach. I'm really starting to like these drs. Ain't communication grand?

So, now we wait for Robert to wake up. I told his kids tonight what to expect when they go to see him, and have asked them to try and engage him in conversation - get him to try to communicate with them. Simple questions like, "How are you feeling today, Dad?" So, we'll see.

I'm going to slow down on these updates now. I will send a report when there is something to report. Hopefully there will be something at least a couple times a week. Please remember to keep us all in your thoughts/prayers. You guys are just the best small town ever - a small town that encompasses the globe! Keep the cards and letters coming, too, will you? God bless you all. I love you!

Susan
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Old 25th August 2008, 10:19 PM   #19
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Hi, Forumites!

Robert had a very good day on Sunday. We ended up watching the Olympics together, even though he was going in and out of sleep. We communicated a bit without him speaking. He can get his point across if he wants to.

This morning I learned that they had turned the ventilator down to the CPAP level again. (Cross your fingers it works this time.) I went to work, then back to the hospital. He slept through almost my entire visit. The good news is that he was breathing on his own with the ventilator only there as back-up, and he wasn't breathing really hard like the last time (this time last week). The neurologist is anxiously waiting for Robert to be weaned from the vent so he can start testing and stimulating him.

I saw the primary dr. as well. His big concern? Would I please allow the nurse to shave Robert's beard completely? He was concerned about hygiene around the trach. I consented. All the nurse could get was clippers, so he isn't clean-shaven yet. I'll take his electric razor (which seldom gets used except on his cheeks) to the day nurse tomorrow and ask them to finish the job. Boy, does he look different. I'm afraid his kids won't recognize him. He's had his beard since before his eldest was born.

It will grow back. Honestly, I really like the beard. I suppose I could get used to him without a beard, but I prefer the beard. I would not have believed that before I met him.

Small steps. Let's hope (or pray) there are no set-backs this time.

Love, Susan
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Old 27th August 2008, 08:28 PM   #20
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Robert is off the ventilator, but they are still giving him oxygen through the trach.

He has some other minor issues that need to be taken care of before he can be transferred. He is not ready for a formal rehab facility - where he would have to be able to withstand 3 hours of physical therapy. So, he may be transferred to an acute care facility which, I'm given to understand, will work with him and get him to the point where he can then move to a rehab facility. I'll be taking a look at one tomorrow which his primary dr. has recommended.

Will let you know more when I do.

Love,
Susan
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Old 28th August 2008, 09:44 PM   #21
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Robert is back on the ventilator. He's just not ready yet. He also has a couple other problems which need to be stablized before he can be trasferred to another facility, which they plan to do soon.

Where Robert is now is the Critical Care Unit of a regular hospital. What they usually do there is stablize the acutely ill patient until they can be moved to a regular room. Sometimes it's the last place the patient sees. It is not a place where the patient normally stays for 3 1/2 weeks. Robert's slow recovery will require a Long Term Acute Care Hospital. LTACH specialize in caring for acute care patients for an extended length of time, and they prepare the patient for the extensive physical therapy they will receive at a rehabilitaion facility. So this is like a way-station for Robert.

I went to the Acute Care Hospital where the primary dr. has said he would like to send Robert. My friend from work went with me. We were both very impressed with what we saw on our tour of the facility. It looks fairly new, and the set-up is similar to where he is now. They have a small ICU and less than 100 beds altogether. They do not handle emergencies - those are transferred to the hospital Robert is in now. They are a highly specialized hospital, and I am convinced Robert will receive excellent care there. In their regular rooms (which is Acute Care), there are 5 patients per 1 nurse. In ICU, the ratio is like where he is now, 2 to 1. I don't know which section he will be transferred to. We asked about a bariatric bed like he has now, and the nurse-tour guide said they can arrange for a "big-boy-bed." Our tour guide said their physical therapists will do things like getting the patient to sit up, feed himself, simple, basic things. When they release him, he will go to a rehab facility where he would get extensive physical therapy.

I spoke to one of Robert's high school friends last night about massage for the muscles on his paralyzed side. She is a state licensed massage therapist, and would be happy to help Robert. She will also teach me a few things so I can massage him when she can't be there. She will come to the hospital this Saturday, and, if the primary dr. approves her, she will get started. The hospital could be held liable, I guess, so she has to be approved. However, the primary dr. was the one who suggested massage.

I read to Robert this morning the section in last week's Swift where Mr. Randi talks about Robert and his "work." It was difficult to gauge his reaction. I can only imagine that hearing Mr. Randi use some of the words Robert has used to describe Mr. Randi was a bit strange for him. If you were to ask Robert who his idol is, he'd tell you: "James Randi."

Since Robert was more awake than he usually is when I visit, I also asked him to try to start making his awake periods longer. I asked him to start taking an active role in his recovery. I told him I was going to start getting harder on him, more demanding. He needs to wake up. That was this morning. This afternoon he slept through my visit when I got there after work. I can only hope a seed has been planted.
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Old 29th August 2008, 08:22 PM   #22
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Robert was pretty alert for a little while this evening. He had just had a bath, and he usually can stay awake a little while after a bath. I saw some real frustration in his expression tonight. I asked him if he understood what had happened. He nodded yes. I asked if anyone had explained just what a stroke is to him (I realized I had told him a couple times he'd had a stroke, but I don't think I ever told him just what had taken place in his head). He shook his head no. So, I explained the bleed, and that the blood has to be absorbed into the brain and that it would take a long time, and that the blood was causing pressure and swelling on the brain because there was just too little room in the skull for the blood and his brain. I explained where the damage was, told him that was why he could not move his left side. Then I told him this is only temporary. I explained that soon he would be receiving therapy, and that I have heard about how some stroke patients have retrained other parts of their brain to do what the damaged area could no longer do. I said this was what I'm hoping for and that this is what I'm expecting. Then I again told him this is frustrating but ONLY TEMPORARY! His eyes opened nice and wide and he looked deeply into my eyes. The usual blinking stopped for a couple seconds.

I think I gave him some hope. At least, I hope I did. His demeanor changed for a few seconds. Then he went to sleep. He woke up a few minutes later and reached up and touched my face. It was nice, until his hand moved down to my shoulder and he started to give me a shove. I stearnly told him not to push me again - please. He stopped and stared at me. I leaned in and told him that if he was worried about me, stop. He wasn't going to be able to get rid of me. That I am there because I want to be. He fell asleep and I left about a half hour later.
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Old 30th August 2008, 09:21 PM   #23
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Last Thursday (the 28th), Robert's neurologist came into the room before I left for work. He was very frustrated because he had ordered another CT and the technicians declined the order. He did not know why. He knew the primary dr. was planning to transfer Robert to the LTACH in a few days, and he wanted another CT before that happened. He asked me to speak to Administration. I told him I would.

After he left, his nurse asked me to wait and give the charge nurse a chance to get the problem resolved. I like and trust Jane, and said I would wait. When I arrived Friday afternoon, I asked his new nurse if the CT had been done. She said no. By the time we were talking about it, it was too late to catch someone in administration. But Christie, the new nurse, told me the hold up was on acount of Robert's weight. I thought this was ridiculous, because they had done at least 3, maybe 4 already in the 3 1/2 weeks Robert had been there.

That's when she told me the weight limit on the CT table is 400 pounds, and that Robert was over 500! I said, "What??!!!" And a few other words. Then she looked at the chart. The first time they did a CT on him (from the emergency room), he weighed-in at 150 kilos. Now he was weighing in at 287 kilos. I said, "He's been on a liquid diet for 3 1/2 weeks and has diarhea - and you're trying to tell me he's gained 137 kilos?" Then I asked how many pounds 150 k was, and she said about 300 pounds. Right! He gained 200 pounds is 3 weeks while lying in a hospital bed being fed introveniously. She said she'd look into it.

This morning, another new nurse (but with a bit more brains) told me the CT still had not been done. I informed her I was going to Admin and would be right back. I spoke with a really nice lady named Kim in Admin, who called the charge nurse, who said she was working on getting Robert weighed properly. I don't believe she was until I got Admin involved. Robert's new nurse sprang into action (not the charge nurse), got on the phone and requested a special hammock-type scale be brought to CCU. Apparently, the beds can weigh the patient, and they were going by what the bed said. When they got Robert into the hammock, they learned he was now 141 kilos. They were going to have to recalibrate the bed's scale.

Robert got his CT this afternoon. While he was doing that, I went shopping! I still had a couple gift cards from my birthday and I went out and blew them! So, yeah, I had a good day today. The icing was that Robert is obviously trying to stay awake. He will start to drowse, and then he will open his eyes wide. And, his nurse for today (I never did get her name, shame on me) told me that when the technicians brought Robert back she asked how the CT looked. She told me this is unofficial, but that the tech said there was a "big improvement" over his last CT. I won't cheer until I hear it from the primary or neurologist. But I can hope . . .
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Old 31st August 2008, 06:30 PM   #24
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Official word: The CT showed significant progress. The Diabetes Insipidus is under control. Things are really looking good.

He was more awake today. He's even moving his lips slightly, like he wants to say something. (Probably something like, "Will you get out of here and let me sleep?!)
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Old 2nd September 2008, 09:05 PM   #25
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Wanna talk progress? Today, after several days of me kissing him, Robert kissed back - twice! Now that's what I call progress!
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Old 6th September 2008, 09:40 PM   #26
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So . . . today we had an informal meeting with the primary dr. and 2 nurses. It turns out that lack of communication is not the only problem we have. Misconception . . . on my part . . . has played a role. I guess I'm tired. I'm not sure what's going on in my head any more. It turns out that, once again, the good doctor has only my husband's best interest at heart.

Somehow, I had the mistaken impression that the LTACH was his idea. It was not - it was the idea of a caseworker, working for Robert's insurance company, who planted the seed of the LTACH (Long Term Acute Care Hospital) in my mind. He says I approached him with the idea, and he was considering it because I had mentioned it. The more I think about it, the more I wonder about what else I've gotten messed up in my mind. Dr. "Primary" is trying to keep Robert from going to the LTACH because he thinks it might not be the best place. He's had a lot of experience with this place. It would be his "last resort." Not that it's necessarily a "bad" hospital," just that it would not be an ideal situation for someone of Robert's age and circumstances.

He will reevaluate Robert's situation on Monday. He has also lined-up an evaluation from someone from the closest rehab facility, which is attached to the sister hospital to the one Robert is now in. It turns out there are a LOT of complications to consider. When the doc told me on Labor Day that this was good and that was stable, he was only giving me part of story. I took his positiveness as "Robert is stable." And he had told me that as soon as Robert was stable, doc would consider moving him to Kindred. But that was not what he meant. He freely admitted that communication is not his fortay (well, not in those words).

Doc spent an hour with Robert's family and me. I ended up closing the meeting by telling him that I will trust his judgement, because it is clear he is fighting for what is best for Robert. His opinion matters to me. However, I need better communication and I need to be in on the decision-making process. Doc was in the choir, saying the last part along with me.

God bless all of Robert's doctors . . . and the (for the most part) exceptional nursing staff. Doc will let me know when it's time to move him, and we will decide together where he will be moved to. I plan to be much more assertive with this particular doctor. I will force communication, and I will repeat to him what I hear him saying to make sure I'm getting it right. I am confident that he is giving outstanding care to his patient, my husband.

Borealys was right. A meeting between the doctor and family is a good thing.
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Old 8th September 2008, 08:19 PM   #27
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Good news, Folks! Robert was evaluated by several therapists today, and the speech therapist has already begun her work with him! He is still in CCU, and blood tests revealed that he has another infection somewhere. They'll find it. But he will be in CCU until he is completely stable. He was much more aware and alert today.

Last night, his son and I took him a cd player and a handful of cds. His best friend will be bringing him a bit more variety. It appears Robert is enjoying the music! His eyes remained wide open throughout the entire mandolin quartet cd I put in. If you don't already know, he plays a mandolin - actually several - he has a collection. When that cd was over, I gave him a choice between three others. I told him to nod his head to show me his choice. He nodded at Tom Petty. Nurses were boppin' and hummin' along! I should have done this weeks ago!

Twice when we were alone tonight Robert looked as though he was going to stare a hole through me. Those beautiful blue eyes can surely take my very breath away. He wants so desperately to communicate. Soon, Baby. Soon.

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Old 10th September 2008, 08:06 PM   #28
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HE'S AWAKE!

Holy cow! He's really awake now! Understands almost everything, reponds well, and is even showing his sense of humor! He loves his music, and was even mouthing the words to songs on a cd by The Band!

His high school girlfriend, whom he has stayed in close touch with over the years, came down from San Jose to see him. He even tried to tell her goodbye when she left, but his trach wouldn't let him. Hopefully they'll swap this trach soon for the kind with the button he can press when he wants to talk. She said he knew her immediately and was very animated. She made a photo album for him with pictures from their youth. He was much thinner at 18! And he had a big 'fro!

When it was just him and me, I had to force my eyes away so as not to stare at him. And, when I looked back, I caught him staring at me. He'd turn his eyes away as soon as I'd catch him. It was really sweet. When I left, I got another kiss. God help me, I'm falling in love all over again.
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Old 11th September 2008, 06:33 PM   #29
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I don't think I told you guys the central line was taken out the day before yesterday. He is still getting IVs, though, in the usual way - a vein in his hand.

Robert was not as alert today. One of his work friends, the one who took our wedding photos, came to visit and brought a blown-up photo of the office gang. I was allowed to put it up on the wall. Robert barely acknowledged that he was there. At one point, his friend told him that I was a pretty special woman. I told his friend I thought Robert might be tired of hearing that and Robert shook his head intently.

I spoke with the primary. He has not ruled out the LTACH. Apparently, Robert did "ok" but not well yesterday with physical therapy, and today he didn't follow direction at all. Doc said he has requested physical therapy every day as opposed to three days a week as the therapist suggested. He still would rather avoid LTACH, if possible. He wants to try and get Robert's strength up so a rehab will take him. He said he never transfers anybody on a weekend, so he will reevaluate early next week. I tried to explain to him that the speech therapist seemed to think he did well the other day. He gave me one of those "I know better than you" looks that I will no longer tolerate and I told him he needed to talk to the therapist.

Doc explained that Robert will go through days like yesterday, when he is extremely alert - his high school girlfriend said he seemed to know her as soon as she came through the door - and other days when he is not so alert. It will be up and down for some time. I tend to agree, judging from what I've seen. That's ok. Slow is ok.

Love, Susan
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Old 13th September 2008, 05:49 AM   #30
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I got a call at work yesterday from Robert's speech therapist. She was very excited. I think it was only the second time she has worked with Robert. She used my list of words to ask him questions - names of his kids, my and my son's names, names of his siblings.

HE SPOKE HIS ANSWERS.

He mostly whispered, but some sound came out sometimes. He still has just a regular trach - nothing made for speaking. At one point, he seemed to be getting tired so she asked if he'd like to try pen and paper. He said yes. But she said he wrote too quickly and his writing was illegible. I told her that's the way he always writes! Heck, his signature is just a scribble - normally!

When she got to the other side of my list of words, she began to ask things like, "What is JREF?" "What does SSB mean?" When he started about SSB, she could see he was tiring. So, she said they'd wait for her next visit to discuss that.

Before leaving, she asked if there was anything he wanted. "I want . . ." "What do you want?" " . . . a kiss." "From me?" she asked. He shook his head and said, "No! From Susan!" So she told him she would go call me and tell me to give him a kiss when I got there.

She called about a half hour before I left work. It took me almost 2 hours from the time I left work to get to him. I fought traffic in one direction to get to his P.O. box, pulling over to talk on my cell phone twice. Then I had double the distance I had just gone to get from the P.O. box to the hospital. I put all the cards, letters and packages down and went up to him and gave him several kisses. Then we went about the business of opening and reading mail and opening the packages.

All the nurses know me, and most of them have had Robert as their patient at some point. As I left for the evening, as the outgoing and oncoming shifts merged, all eyes (and smiles) were on me. Finally, someone asked, "Well? Did he get his kiss?" I said "He got lots of kisses!" The staff was elated!
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Old 14th September 2008, 09:56 PM   #31
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Robert was moved to a regular room today. He will not be given a roommate, even though there is another bed in the room. Robert's bed takes up a good portion of the room, so I don't think they could get another patient in there. It's a nice room, without all the noise of the CCU. It's a much more relaxed atmosphere.

Here's the new game plan: Doc will call his doctor-friend at the sister hospital, which has a rehab facility attached, and ask him to reevaluate Robert. He wants to move Robert to the acute care department at that hospital, where he will continue to get the therapy he is now getting until he is strong enough for the rehab facility. I will go check out the rehab facility Monday. Doc is pretty impressed with this facility, plus Robert will get to keep all his doctors if he is transferred there. Until the sister hospital says they'll take him, he will stay where he is until he is strong enough.

After almost 6 weeks in the CCU, it was hard to leave. The staff is great, and they all love Robert. It was hard for them, too, watching him leave. I gave them about 30 printed pages of the thread I started about all this, because I wanted them to know Robert a little better, and who better to describe him than all of you?

The day nurse on the "surgical" floor is very sweet. She heard me telling Robert I needed to go home and get something to eat, so she brought me a tray! It wasn't too bad, either - chicken breast with like a Hollandaise-type sauce on it, rice and veggies. Fresh fruit cup for dessert! Not bad at all. She even invited me to stay over night if I wanted. If it had been a Saturday night, I would have taken her up on it. But, I have to go to work in the morning.

This has really been my day. My adult Sunday School Class gave me a huge poster-board get well card for Robert, signed by just about everybody in the class. Then I got a free full-body massage from Robert's high school friend who is a massage therapist. (I've never even been in a "spa" before, let alone gotten a professional massage!) When I finally got to the hospital, they gave me the good news that his condition has been upgraded and he was to be moved "upstairs." Then I got a free hospital meal and an invite to stay as long as I like. I saw another of Robert's high school friends who came to visit, his best-bud, John, and my friend, Becky. Icing on the cake - more kisses from Robert! Today was a really good day.
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Old 17th September 2008, 08:40 PM   #32
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Just a note to let you know that Robert used a purple (his favorite color) stopper of-sorts in his trach today to use his voicebox for the first time in more than 6 weeks! Another major achievement! His speech therapist says he's doing G-R-E-A-T! The physical part is a bit harder, but he is working on it. She asked if there was anything he wanted to tell his wife, and he said very plainly, "Tell her I love her." I imagine he'll be telling me himself soon!

Love,
Susan
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Old 19th September 2008, 09:19 PM   #33
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Hello, JREF Forumites.

Today I had my first conversation with my husband in almost 7 weeks. I was elated!

I was there when the speech therapist came in. As I told you in my last update, she's been putting a little purple device over his trach the last few days so that he can have a voice. He has only lasted 4 - 6 minutes at a time with it before becoming anxious and his blood pressure increasing. Today, he had so much to say to me that he lasted a full hour, and could've gone longer. He continued to try and talk to me after the device was removed and the therapist left. I didn't understand most of what he was saying, so he tried to write on a little whiteboard I got him. That, too, was difficult to understand. He kept trying, and the more he concentrated the better able I became to read what he was writing.

OK. A little heads up here: This is where you may need to grab a Kleenex.

One of the first things Robert said to me was "Thank you for everything you have done for me." I welled-up and said, "It's been my pleasure." This was the point when the therapist excused herself so we could have a private (sort-of) conversation. She informed both of us that she would be just outside the open doorway. We said a lot. She must've given us at least 15 minutes alone (sort-of). When she came back in, we were all very relaxed and jovial. Robert's sense of humor really came through and I got to see him smile big when he saw me laughing.

I finally told Robert today that the insurance company has been pressuring the doctor to send Robert to a nursing home. Doc says "Absolutely not!" I spoke to the insurance company yesterday and have been assured that it is the doctor's decision when Robert will be transferred and to where. But, I told Robert, he needs to become more active in his recovery, and not allow the therapists to do everything. That way, Robert will become stronger and the doc will have more to show the insurance company that he is just where he needs to be and he will be strong enough to go to rehab at some point. And, btw, I told the insurance company I wanted it in the "notes" in their system that whatever Doc says, I will support - if anyone says or does anything to the contrary of what Doc says I will fight it with every ounce of my being. The CS rep said, "Understood."

Doc even came in while I was there and I told him I had explained the situation to Robert, who also "understood." I had seen the physical therapists today, too. Both they and Doc told me I can help Robert get stronger by moving his left arm and leg just the way the therapists did. Robert told me it "Hurts," and I told him he will need to grin and bear it until it no longer does. (Now, before anybody gets too excited about Robert feeling pain in the arm and leg he cannot move - he can feel his left side, he just can't move it. The part of the brain that is damaged only handles the movement of them.)

So, Robert had a busy and lucid day. I had one of the best days since all this started. We got to have a heart-to-heart conversation! Robert now understands he needs to start moving. He also just learned that he's been in the hospital for almost 7 weeks - he thought it was a few days. So it was a wonderful and productive day! I can only pray that he continues tomorrow to be as lucid and willing as he was today, but will not be surprised if he is not. Keep the prayers and good thoughts coming, Everyone.

God bless.
Susan
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Old 20th September 2008, 08:42 PM   #34
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So, today Robert was - which is it - upgraded or downgraded? He is now on a regular surgical floor. He moved from CCU to a floor where the care is a step below CCU on the 14th, and today he went to the surgical floor. No more monitors all over his chest for him to pull off! He's still got the trach with a small oxygen mask over it and some ivs.

The move was, like everything with Robert is, a big production - Robert in center stage. We also had a VIV (very important visitor) from our bank coming, so Robert was working very hard at remaining awake and aware. He answered her questions, signed some papers, then finally relaxed. What a huge day - very tiring for me, too! He recognized Mom this time and even talked to her at great length. Without the device over the trach it is extremely difficult to understand him. But he slowed down his speech and really concentrated and got several topics covered.

I wonder what tomorrow will bring? We are experiencing a very positve upswing here. May it continue!
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Old 23rd September 2008, 06:32 PM   #35
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Hi, Everybody! {big wave}

I visited a rehab facility yesterday that would knock the socks off any other rehab facility in Southern California. It is fantastic! It has homey-looking rooms, and a structured environment which won't allow Robert to get lazy or procrastinate. It's reputation is exemplary. They have an acute care hospital (but no emergency room), as well as buildings for outpatients with various disabilities. I know it is the right place for Robert. If he has an emergency situation, there is a large hospital only blocks away.

I was worried about how we might pay for it, as Robert's insurance company does not have an agreement with the facility. However, I have discovered that my insurance plan does, and after adding him to my plan his care there will be covered 100%. It will mean my payroll deduction will more than double this year, but it's a small sacrifice for the excellent treatment I expect him to receive.

Until he can be transported to the new place he will have to stay in the hospital he's been in now for over 7 weeks. The effective date of adding him to my plan is October 1st, and his primary doctor says he's ready. He is very alert, though still a little confused sometimes. His buddy, John, made an analogy, and it made sense to me. Here is the Susanese version: Different parts of his brain are coming on line, kind of like a computer booting up. It won't be long before he is (mostly) back on line.

He got a new trach today, and the pulminologist says in a week to 10 days they will likely get rid of the trach altogether. He is lifting head and shoulders off the mattress in an attempt to sit up. He is coughing so well, everybody stands back, and the RT's are not finding anything when they try to suction, which is not very often any more. His speech therapist couldn't be happier with his progress. He can joke around better than any of us. All we gotta do is get his body moving!!!

I spoke with his primary dr. today, who told me that Robert would likely spend several weeks in rehab, then they'd send him home on an outpatient basis. I said "Several weeks? I was expecting months!" He said, "No. Not with the rate he is progressing."
{Better Half does a little dance and hugs Doc!} But we will know more once Robert is in rehab. Wouldn't it be something to have him home before Christmas?
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Old 26th September 2008, 09:05 PM   #36
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Today, a woman from the rehab facility I told you about came by to evaluate Robert. He was asleep when she got there. I started waking him up, and she went to look at his chart. While she was away, I started describing the place to Robert. When she came back, she didn't want to see if he could do anything. She told him - not me - that he is "almost there, but not quite." She told him he needed to start exercising. She told him that once he's sitting up, things will start to come back quickly. He listened . . . intently.

When she left, he said he wanted to sit up. I told him that I have seen him raise head and shoulders off the mattress, so I know he can do it. So we practiced lifting his head and shoulders off the mattress with me as resistance - 10 times before I forced him to rest. I had to leave for a couple hours, and when I came back he wanted to exercise again. We lifted 10 more times, then I forced him to rest. He quickly fell asleep.

This woman will be back early next week. This time, we will be ready. Starting tomorrow, head and shoulders lifts and leg kicks (right leg) will be the order of the day. I will exercise his left leg and arm the way the therapists at the hospital showed me. She may turn him down again, but it will be the last time, I'm sure. Robert finally has the motivation. (I have a feeling that the motivation just might be the library I told him about in the rehab facility - it has a computer and internet access.)
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Old 28th September 2008, 07:30 PM   #37
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More good news, Folks!

A little determination on my part, along with loads of cooperation on the part of Robert's nurse for the day, and the ingenuity and knowledge of hospital equipment available of a CNA (Certified Nurse's Assistant), Robert sat up for the first time today!



They had a "table" which could be raised or lowered to the bed's height and placed alongside the bed. They then slid Robert onto the "table" and strapped him down in two places and raised side guardrails. Then, they converted it into what looked like a recliner - with Robert strapped onto it! It was totally amazing! There were 5 or 6 guys, two nurses, a CNA and an RT (Respiratory Therapist) in on this operation! He stayed in a sitting position for about 30 minutes, then had me call for help to get him back into the bed he's been in for almost 2 months. The "back in bed" production was not as big - 3 staff guys, a security guard, the CNA and the RT.

hcmom came by earlier to help me exercise him, too. With her help we did leg lift/knee bends and arm raises, then some head and shoulders lifts. So, by the time the chair-sitting was through, Robert and I both were exhausted! He went to sleep and I came home!

Tomorrow, JPL (Robert's brother) is coming up to spend the day and help out with Robert's exercises. hcmom will be there in the early afternoon as well for a round of exercising. I will supervise and get a much needed break. Tues and Wed, his sister who lives in the LA area will be by to help and I'm hoping I can recruit a couple other people. I want to do 2 sessions of exercising a day, and the "chair production" each day for as long as he can stand it. I'm hoping the rehab facility rep will be back Wed for another evaluation. She can't possibly turn us down this time!

Robert was such a trooper through the whole thing! I can't believe how strong he is becoming! I told him today that if I ever had any doubts about his recovery he just dashed them all away today.
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Old 3rd October 2008, 09:19 PM   #38
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Well, he's been rejected by the rehab facility again. They claim he's "too low level." This judgement was based on the "notes" of the hospital's Physical Therapy team. This "team" has consistantly treated Robert like a permanately bid-ridden patient who just needs muscle movement to keep from cramping up. They rarely challenged him, and yet put in their notes that Robert did not respond to commands. The only "command" I've ever heard one of them give is, "Press your left foot against my hand." DUH! They would spend 10 minutes with him two to three times a week - how do they know what "level" he is??? They didn't even know he could talk!

I told the head of the department yesterday how I felt about the treatment her staff has been giving Robert. Robert's best friend provided moral support and focus. Robert's PT session today (he will now receive therapy 6 days a week) went extremely well. He really showed these "therapists!" They had him sitting on the edge of the bed, helping him balance while giving him instructions for movements. I had to turn away for a couple moments in tears. The charge nurse hugged me and I said to her, "I knew he could do it! They thought I was just a crazy wife with unrealistic expectations!" The entire nursing staff on that floor was at the door to Robert's room, watching the session with huge smiles.

His best friend and I gave him a mild workout at lunchtime. I had him reading aloud from back issues of Swift when the PT folks came in. He had a really good session with PT. And a couple hours later he was helped into the Geri-chair (the gurney-like table that converts to a recliner-like chair), where he spent more than an hour. One of the brakes on the chair was left unlocked, and Robert played the last half hour or so, moving the chair around in place. He had no idea that he was also exercising when he reached out for things to help him move the chair around.

At several people's suggestion, I asked the charge nurse to see if she could get Robert a "trapeze." This would be something suspended over the bed which he could reach out and grab and pull himself up with. By the time I left my snoozing hubby she told me she was hoping to have one up before I come back.

A lot was accomplished today. You should've seen the pride on his face as the charge nurse praised him and told him he made her day.

The rehab facility says that Robert "must withstand 3 hours of therapy (combination of physical, occupational and speech) per day." pa-shaw! Piece of cake!
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Old 5th October 2008, 06:41 PM   #39
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I need to get back to 8-hr days at work. Is there anyone who would like to volunteer to sit with Robert during the day for a couple hours? Now that PT is doing what they should 6 days a week, we don't need to give him PT. I just want someone to occupy part of his day so he doesn't get bored. Please PM me for directions.
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Old 8th October 2008, 09:07 PM   #40
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The latest: Robert's pulminologist will plug his trach tomorrow, forcing him to breathe through his nose and mouth. He will be moved to DOU where he can be monitored for 24 hours to see how he does without the trach. If all goes well, the trach will come out on Friday. Then, a waiting period of 48 hours before they begin to introduce food - liquids first and so on.

I have been speaking with the assistant to the Medical Director at the rehab facility. I explained my opinion that the Physical Therapy Dept in the hospital has unfairly evaluated Robert. Robert's case worker (who up to this point has been pushing for Robert to go to a nursing home) listened to my complaints today and has taken my side. She was going to fax the latest PT notes to my contact, and include some notes of her own that she believes Robert is ready for rehab. My contact at the rehab will also set up a conference call between her boss and Robert's primary physician, who is also of the opinion that now is the time to start talking transfer.

I'll keep you posted.

Hugs, Susan
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