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Kil
Evil Skeptic
USA
13477 Posts |
Posted - 08/20/2008 : 11:09:20 [Permalink]
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A sticky threadhas been started at the JREF Forum to get all of the updates together and in order. Seems I missed one post and got another out of order, because they became hard to find. Now it will be easy to keep up. These go up to today.
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 |
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 |
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 |
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 |
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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Uncertainty may make you uncomfortable. Certainty makes you ridiculous.
Why not question something for a change?
Genetic Literacy Project |
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Kil
Evil Skeptic
USA
13477 Posts |
Posted - 08/21/2008 : 10:44:41 [Permalink]
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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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Uncertainty may make you uncomfortable. Certainty makes you ridiculous.
Why not question something for a change?
Genetic Literacy Project |
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Kil
Evil Skeptic
USA
13477 Posts |
Posted - 08/24/2008 : 12:22:48 [Permalink]
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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 |
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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Uncertainty may make you uncomfortable. Certainty makes you ridiculous.
Why not question something for a change?
Genetic Literacy Project |
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Dude
SFN Die Hard
USA
6891 Posts |
 Posted - 08/24/2008 : 14:28:19 [Permalink]
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ack... somebody should take Mrs Lancaster out and give her some ativan!
Just an FYI to all you people who are not healthcare professionals. If you have a family member in the ICU, and you are in the face of doctors and nurses (like this woman is), you are going to provoke the opposite response to what you intend. The absolute minimum will be done for your family member. Her behavior (I see this personally all the time) makes doctors and hospital staff avoid her.
You want to get doctors and nurses on your side, not make them think you are a high lawsuit risk. Bring candy, doughnuts, or something for the staff. Ask as many questions as you want, but as soon as you become accusatory (like Mrs Lancaster and her clear failure to comprehend what an allergic reaction is ans is not, and her questioning why her husband recieved sedation), you set staff back into self protection mode. Hell, most nurses will sit and answer questions for you until you run out of questions to ask. Doctors, if you catch them (busy bastards) are mostly the same.
As soon as you turn it into a you vs them situation though, you have just purchased a first class ticket to minimum standard of care land.
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Ignorance is preferable to error; and he is less remote from the truth who believes nothing, than he who believes what is wrong.
-- Thomas Jefferson
"god :: the last refuge of a man with no answers and no argument." - G. Carlin
Hope, n.
The handmaiden of desperation; the opiate of despair; the illegible signpost on the road to perdition. ~~ da filth |
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Kil
Evil Skeptic
USA
13477 Posts |
Posted - 08/29/2008 : 21:25:57 [Permalink]
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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 |
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 |
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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Uncertainty may make you uncomfortable. Certainty makes you ridiculous.
Why not question something for a change?
Genetic Literacy Project |
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Kil
Evil Skeptic
USA
13477 Posts |
Posted - 09/06/2008 : 13:23:26 [Permalink]
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I am now going to include dates because of the sporadic nature of my visits to the JREF.
August 30th:
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. |
August 31st
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 . . . |
September 1st
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?!) |
September 3rd
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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Uncertainty may make you uncomfortable. Certainty makes you ridiculous.
Why not question something for a change?
Genetic Literacy Project |
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filthy
SFN Die Hard
USA
14408 Posts |
Posted - 09/06/2008 : 13:53:40 [Permalink]
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Excellent! "Each journey must begin with a single step."
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"What luck for rulers that men do not think." -- Adolf Hitler (1889 - 1945)
"If only we could impeach on the basis of criminal stupidity, 90% of the Rethuglicans and half of the Democrats would be thrown out of office." ~~ P.Z. Myres
"The default position of human nature is to punch the other guy in the face and take his stuff." ~~ Dude
Brother Boot Knife of Warm Humanitarianism,
and Crypto-Communist! 
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Kil
Evil Skeptic
USA
13477 Posts |
Posted - 09/21/2008 : 10:19:58 [Permalink]
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I have skipped some posts to get to the exciting part. Sorry I haven't been more consistent on doing this.
September 11th:
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. |
September 12th:
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.
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September 12th:
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.
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Uncertainty may make you uncomfortable. Certainty makes you ridiculous.
Why not question something for a change?
Genetic Literacy Project |
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HalfMooner
Dingaling
Philippines
15831 Posts |
Posted - 09/21/2008 : 23:18:58 [Permalink]
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This is very fine progress. Robert's wife -- her attendance, loving care, and insistence that he cooperate with therapists -- is probably one of the greatest factors in his ongoing recovery. Good for her!
To one who is recovering from a stroke (I should know!), physical and speech therapists often seem like demented sadists from Hell. A patient needs to be reminded constantly that the things the therapists are doing -- and what they expect the patient to do -- are vital to his recovery.
Now, folks it may seem to many of you that Robert is in pretty terrible condition. In a sense, he is, but consider that he was completely oblivious to the world a few weeks ago, and now he can talk, and sign papers!
Hang in there, Robert. I want another chance to tease you in one of our chat sessions.
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“Biology is just physics that has begun to smell bad.” —HalfMooner
Here's a link to Moonscape News, and one to its Archive. |
| Edited by - HalfMooner on 09/21/2008 23:20:02 |
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Dave W.
Info Junkie
USA
26022 Posts |
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Kil
Evil Skeptic
USA
13477 Posts |
Posted - 11/03/2008 : 10:15:13 [Permalink]
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Sorry. I should stay on top of this better than I have. I have not included every post. But hopefully this will bring you all up to speed. If you want to read all of them you can find them at:
http://forums.randi.org/showthread.php?t=120873
12th October 2008, 08:29 PM
I know it's been a few days since my last post, but I wanted to have something to report. I don't have too much, but here goes:
He was moved to DOU, to a room off in a corner but where he gets constant care. He made it through the 24 hour waiting period with no problem. But when the doctor tried to remove the trach he discovered that Robert's skin had sort-of grafted itself to it. He's only had this trach for a couple weeks, and dr. was not expecting this. He said he would have expected this to happen to the last one which had been in for several weeks, but it didn't happen then so he certainly didn't expect it to happen now. So, now Robert has to go through surgery to have it removed. And, because the area could bleed and drain into his lungs, they will replace it with another trach and wait a few days (maybe 3) and do what was originally intended - remove the trach and let the hole heal itself.
So, as of last night at about 7, Robert was to have surgery today. We did not know what time, so the staff suggested I arrive this morning between 7 and 7:30. Robert and I waited 3 1/2 hours to be told the surgery would be tomorrow (Monday). For Robert, this means he still cannot eat or drink until the end of this week at the earliest. Now that he is "aware," not being allowed to eat or drink is difficult to accept.
Now I'm thinking it was a good thing that the PT staff has held him back - but for reasons that have nothing to do with them. It looks like at least another week in the hospital.
I had my first "night out" on Friday. Robert's mom and I had dinner and saw "Gypsy" at the community theatre. We stopped in and saw Robert before going to dinner and he was actually very lucid and was very much the old Robert. Forumite, Gilmar, sat with Robert from about 3 pm until 8 pm for me. They had conversations about a range of topics and Gilmar read a Sherlock Holmes story to him. Turns out they had things in common. Robert says "he's a pretty good guy." I agree. Thanks, again, Gilmar. You're terrific!
Since Robert will be in the hospital probably all this week, I am again asking for volunteers. hcmom and Gilmar are the only ones who heeded the first call. I have to work. I have no choice. Is there anyone in our area who can give Robert a couple hours of their time during the day? |
This is something I will look into. We live in the same general area.
16th October 2008, 05:18 AM
Robert came through the surgery just fine. As a matter of fact, they removed the replacement trach today. He is now back in the "regular" room he was in before he was put in DOU. He seemed upbeat, though still not making a lot of sense.
Again he tried to get me to help him stand up and walk. This time I told him I'd make him a deal: if he moved his left leg, I'd help him get out of bed. I had to tell him several times that I won't help him get up until his left leg is moving. I explained that the rehab was where they'd teach him how to use the leg and his left arm. He would appear to be contemplating what I said, then go right back to planning how he was going to get out of bed. I finally told him I was tired and needed to sit down and did so. But I did tell him I was very glad that he wants to stand and that I hope he'll do whatever the therapists want him to do to get there.
So now the next hurdle is the swallowing test. Doc said a few days after the trach is out, so we have to wait. I imagine my next post will be about the test after he's taken it. Maybe when he gripes about the hospital food, things will seem a little more normal. |
12th October 2008, 08:29 PM
I know it's been a few days since my last post, but I wanted to have something to report. I don't have too much, but here goes:
He was moved to DOU, to a room off in a corner but where he gets constant care. He made it through the 24 hour waiting period with no problem. But when the doctor tried to remove the trach he discovered that Robert's skin had sort-of grafted itself to it. He's only had this trach for a couple weeks, and dr. was not expecting this. He said he would have expected this to happen to the last one which had been in for several weeks, but it didn't happen then so he certainly didn't expect it to happen now. So, now Robert has to go through surgery to have it removed. And, because the area could bleed and drain into his lungs, they will replace it with another trach and wait a few days (maybe 3) and do what was originally intended - remove the trach and let the hole heal itself.
So, as of last night at about 7, Robert was to have surgery today. We did not know what time, so the staff suggested I arrive this morning between 7 and 7:30. Robert and I waited 3 1/2 hours to be told the surgery would be tomorrow (Monday). For Robert, this means he still cannot eat or drink until the end of this week at the earliest. Now that he is "aware," not being allowed to eat or drink is difficult to accept.
Now I'm thinking it was a good thing that the PT staff has held him back - but for reasons that have nothing to do with them. It looks like at least another week in the hospital.
I had my first "night out" on Friday. Robert's mom and I had dinner and saw "Gypsy" at the community theatre. We stopped in and saw Robert before going to dinner and he was actually very lucid and was very much the old Robert. Forumite, Gilmar, sat with Robert from about 3 pm until 8 pm for me. They had conversations about a range of topics and Gilmar read a Sherlock Holmes story to him. Turns out they had things in common. Robert says "he's a pretty good guy." I agree. Thanks, again, Gilmar. You're terrific!
Since Robert will be in the hospital probably all this week, I am again asking for volunteers. hcmom and Gilmar are the only ones who heeded the first call. I have to work. I have no choice. Is there anyone in our area who can give Robert a couple hours of their time during the day?
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26th October 2008, 06:58 PM
Almost 12 weeks now . . .
The approvals are all in, Robert is healthy enough, we're now just waiting for the paperwork to go through, which should happen tomorrow (Monday). Rehab hospital, here we come!
His PT sessions have been very promising. Therapists still have to get him into a sitting position, but once he's there they let go and he sits on his own. When he starts to lean, they remind him to counter and he does. A therapist I'd not met until Friday's session said that there is not only "resistance" in his arm and leg, but actual muscle movement. I didn't see any when she worked with him, but she had her hand in strategic places while working with the arm and then the leg and she could feel the muscles trying to move. She felt thigh muscles tighten as she bent his knee and pushed toward him. He also gave a yell in pain, so I thought at first she was feeling a reflex, which, I'm told, comes from a different part of the brain. She assured me it was not reflex, but Robert trying to move his leg. She's worked with him a few times, and the last two he's apparently been a lot more cooperative and compliant to her commands. Everyone is saying he is definitely ready now for more intensive treatment - everybody that is, except for Robert, who isn't so sure he wants to go through all that pain! I wish he didn't have to, but he does have to.
There is still no way of knowing how much of his left side Robert will get back. We don't know if he'll walk out of the rehab, or end up in a wheelchair. I am a planner, and all this "not knowing" has been very difficult for me. First, not knowing if he'd survive the first 72 hours. Then, a week later when he started to show signs of recovery, hopes were high. A week after that, hopes were dashed when he suffered a set back doctors said he should have died from. Then it was, will he wake up again, or will he end up comatose? He slept, with occassional semi-awareness moments, for a month. When he began to wake up again, he was finally moved out of CCU. Finally, I could start to plan, I thought, because physical therapy will begin and we'll see what he's capable of. Here we are, 6 weeks from that point, and I've learned I can't plan anything. I still have to wait for Robert's brain and body heal. And I don't know how long that will be.
However, because I am a planner, I have begun to look at expenses for our "worst case scenario." If he comes out of rehab in a wheelchair, what will a power chair cost? What about a converted van? Where will we live? If he ends up on permanate disability, he won't have the income we're used to. It's daunting, I can tell you.
We discussed our goal this weekend. Our goal is to get him to the point where he can walk into TAM7. Which leads me to a shameless plug. Please visit Chillzero's website at:
http://chillzero.blogspot.com/2008/1...lancaster.html
Yes, we could probably use the money, but that's not why I want you to buy the items on offer. I want to see as many SSB and "Dark Entity" shirts and hats in the conference room at TAM7 as possible! There is internet access at the rehab, and he will be back home well before TAM7, so there is no way to keep this a surprise for Robert. JREF Forumites (and folks on other skeptical sites) have contributed a lot of money for Robert's medical expenses, and I am ever so grateful! I want your purchase to be a show of love and respect for the man himself more than a donation. Can we unite in this way? The first batch order is October 31st. I hope you will consider this gesture - and wear your support at TAM7!
God bless you all. I love you - including all you other "interested parties" at other sites where my posts are being copied to. Your outpouring of love has been overwhelming. I can't thank you enough.
Hugs, Susan |
28th October 2008, 03:06 PM
Robert moved into his new home for the next several weeks last night. His room is 2 1/2 to 3 times larger than his hospital room was. He has a roommate who didn't say much while I was there. He has a "big boy" bed - it's longer than the one he spent the last 12 weeks in, but narrower. He seemed to be quite comfortable. He has a TV on a bendable arm which he can bring right up to him in bed. There is a built-in dresser/closet/shelves in a corner that has a pull-out table or desk. It will be perfect to put the laptop he was given at TAM6 on. I was told there is internet access in the rooms - I will double check on that.
This morning he will endure a series of evaluations, among which will be the "swallowing test" he's been waiting for to determine if he can eat more than popcicles. I will head out shortly to join the "festivities." Today we will hear from the experts what he is presently capable of and what their expectations will be. They will also be telling him what he needs to be doing over the next few weeks and setting goals. This is my time to step down a bit. I've had a lot of control over his life the last 12 weeks. This is where he begins to take control back.
The physical/occupational therapy room, what I like to think of as the "gymnasium," is right across the hall from his room. I know I saw the speech therapy room, but can't remember where it is. There is a communal room down the hall, across from the nurses' station, which is like a comfortable livingroom. Practically next door to his room is a patio or garden area. I remember it from my tour weeks ago. There are several different surfaces to learn to walk or navigate a wheelchair on, as well as beautiful plants and flowers.
His nurse last night was very friendly and understanding. At one point he told Robert he was going to put a pillow under his left knee to help alleviate the aching he felt from being moved so much. Robert refused to allow it. Rom was extremely patient and kind, and said "Tonight, you may have it your way." To which I added, "But tomorrow you need to start letting the experts do what is needed, even if it hurts at first." He was OK with that . . . but he'll forget that today.
Everything he will endure today will likely exhaust him. At some point, he will need to go to the nearby hospital to have his feeding tube removed. Don't know if that'll be tomorrow or just when. I wish that had been taken care of before we left the previous hospital. But we will deal with things as they occur.
Here we go . . . |
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Uncertainty may make you uncomfortable. Certainty makes you ridiculous.
Why not question something for a change?
Genetic Literacy Project |
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Robert Lancaster has had a stroke
