Ariane and Walter send an email to Julie and me to say hi during this time.
I answered a bit in German, followed by explanation of Mom's status in English...
===========================================
---------- Forwarded message ----------
From: Dave Ruden
Date: Sat, Jun 20, 2009 at 12:08 PM
Subject: Re:
To: Walter & Ariane Roy
Hallo meine lieblich Familie,
Danke fuer deine Email. Ich bin derzeit mit neue Arbeit und Kuemmern-nehmen(?) fuer meine Freudin, sehr beschaeftigt. Ich habe zu wenig Zeit meine deutsch zu ueben. Julie ist jetzt zurueck von Hotel. Ich schlief gut gestern, und folglisch kann ich Heute wenig Arbeit tun.
Also, nur eine kleine Brief auf deutsch "Hallo" zu sagen.
Bitte, kanst du mir die Email-addresse fuer Horst und/oder Florian schicken. Ich moechte gelegentlich ihnen schreiben. Ich hoffe dass Florian ganz-geheilt wird!
Als die bestimmten Daten ueber Mom's Bedingung kompliziert ist, ich beschreibe es fuer Euch auf englisch...
Chuess!
---Dave.
---------
Mom's doing really well. She slept through the night with only a couple short exceptions. As I've been taking the 'night-shift' while she's in ICU, I'm much better rested this morning than I was yesterday :).
Starting to get some of the IV's and probes out today. She sat up in the chair yesterday for more than an hour. Complaint about pain is much reduced. Complaint about difficulty breathing has subsided as well this morning. Eating easily. Still pretty sleepy, but when she's awake she is very awake. Also her feet, which almost always feel cool, feel luke-warm - and that's not wearing socks! Still in Atrial-Fibrillation (mostly in the 70 to 100 bpm range), yet they are less concerned about that, given that it is not in a life-threatening status - blood pressure is still good, and she doesn't feel badly from it. Still, they're likely to prescribe some kind of anti-fib medication for it. I really hope we get her moved to private room today. Would hate to leave tomorrow while she's still in ICU. Dr just came in and said he'll keep her in ICU for another day. Going slow to be cautious. So it's not today but she's real close to getting out of ICU.
Doctor also said that she's got a bit of fluid in her right lung ("odd cause they didn't do anything there"). They're watching it, getting up and down - being a bit more active - might very well help clear that up. If not, they'll aspirate it maybe tomorrow. Mom hears about fluid in her lung and she starts thinking fatalistic again. I was in for my collapsed lung operation 25 years ago, and similarly had fluid in my lung and a chest-drain tube for a good handful of days afterwards. So fluid is not what we want, but it isn't the sign of the beginning of the end like she can sometimes be looking for. I relay my experience to her, and she asks the nurse and doctor about it. Everybody is telling it straight, and they're saying that it's related to having such surgery and being in bed for several days, and it should clear up on its own. And if it doesn't the aspiration will take care of it. So after chewing on this for an hour or so, she starts to feel more up beat.
She also finally had a bowel movement, on her own, this morning. That's really good. Unfortunately, the exertion subsequently had her feeling very fatigued. That coupled with thinkng again about the doctor's note of fluid in her lung started her thinking fatalisticly again. So we keep reminding her that it is part of the process. Julie is good at forcing her to stop talking in fatalistic terms. I'm good at giving he time to express herself, ask questions and giving her answers at a technical level that she appreciates - she is into "explanations". Also, I can give her insight that comes from my own very similar chest-operation experience.
So she's back in bed now and resting. In a couple hours or so, she'll get her energy back and be more cheery.
Love to all.
Saturday, June 20, 2009
Friday, June 19, 2009
ICU recovery
We went in to see Mom Wednesday early evening. She was sedated and not awake. The nurse said she'd be that way until morning. So given that there was also no place in the ICU room for another person to stay overnight with her, we went to the hotel for some much needed rest. We walked around the grounds, and then sat outside the restaurant again for dinner.
Before turned in at Midnight, Julie called the hospital to check on Mom's status. The nurse said she let her come out of sleep briefly to check on her mental state - do you know who you are, where you are, what's going on. The nurse said she was cogent enough to respond by hand squeezes.
Julie planned to be at the hospital by 7am Thursday. I pretty much knew that wasn't going to happen. Too much sleep needed to wake that early, and too much to do getting dressed and checked out. We finally made it to the hospital at 10am. Mom was no longer intubated (breathing tube was removed), and she was fully awake and communicative, albeit in small amounts.
She was in significant pain, and getting jolts of morphine to help. It only dulls the pain down, but it's good enough for a little while. She was also talking fatalistic, saying "she shouldn't have done it", it was too painful, too much trouble. Julie tried to help by pointing out why she'd done this, what the decision process was, how she was getting better. It wasn't very helpful. Julie doesn't understand, or more than this, when it comes to Mom, she can not back away from pushing for optimistic attitude.
At this moment, Mom needs to be able to express the pain, be acknowledged and validated, and that's all. No offering of solutions or positive argument/reasoning.
Also, when Mom needed some help with something, like shifting her posture, or adjusting the bed or pillows, she speaks slowly with breaths inbetween her words. Julie is so focused on immediately helping that she tries to finish her sentances for her, and then do the adjustment she finishes - without waiting to hear confirmation or correction. It was frustrating to Mom because Julie was often wrong. It was frustrating to me to sit there and witness cause I knew Julie was wrong and overly eager. I also knew that my jumping in and trying to resolve the aggitation would result in even more aggitation.
So eventually, Julie went out for a smoke break while I remained behind. We decided not to leave her alone, and she asked us to be sure to have one of us there as she found it difficult to get the staff's attention sometimes.
While Julie was out, I listened to Mom and gave her that simple, pure validation of discomfort and pain. It really helped. I was also able to 'relate' real well to her discomfort by reminding her that I had gone through very similar pain when I had my operation in '82. She appreciated that.
Julie arranged for another hotel a little further away, but half the price of the nearby one. Later, she went down for dinner, and after her, I went. While there, I spoke to Lenny and to Pam. My conversation wtih Pam was nice and long. It was well past 9pm by the time I finished. I had sat outside for dinner, and it turns out they lock the doors at 9pm so I and 3 other people were locked out. We managed to waive down someone inside to unlock it for us and I headed up to ICU again.
I took the night shift at ICU, and Julie went to the hotel for the night. I was awake until around 3am, and Mom was up and down until then as welll. Then she fell asleep until 6:30am or so.
Before turned in at Midnight, Julie called the hospital to check on Mom's status. The nurse said she let her come out of sleep briefly to check on her mental state - do you know who you are, where you are, what's going on. The nurse said she was cogent enough to respond by hand squeezes.
Julie planned to be at the hospital by 7am Thursday. I pretty much knew that wasn't going to happen. Too much sleep needed to wake that early, and too much to do getting dressed and checked out. We finally made it to the hospital at 10am. Mom was no longer intubated (breathing tube was removed), and she was fully awake and communicative, albeit in small amounts.
She was in significant pain, and getting jolts of morphine to help. It only dulls the pain down, but it's good enough for a little while. She was also talking fatalistic, saying "she shouldn't have done it", it was too painful, too much trouble. Julie tried to help by pointing out why she'd done this, what the decision process was, how she was getting better. It wasn't very helpful. Julie doesn't understand, or more than this, when it comes to Mom, she can not back away from pushing for optimistic attitude.
At this moment, Mom needs to be able to express the pain, be acknowledged and validated, and that's all. No offering of solutions or positive argument/reasoning.
Also, when Mom needed some help with something, like shifting her posture, or adjusting the bed or pillows, she speaks slowly with breaths inbetween her words. Julie is so focused on immediately helping that she tries to finish her sentances for her, and then do the adjustment she finishes - without waiting to hear confirmation or correction. It was frustrating to Mom because Julie was often wrong. It was frustrating to me to sit there and witness cause I knew Julie was wrong and overly eager. I also knew that my jumping in and trying to resolve the aggitation would result in even more aggitation.
So eventually, Julie went out for a smoke break while I remained behind. We decided not to leave her alone, and she asked us to be sure to have one of us there as she found it difficult to get the staff's attention sometimes.
While Julie was out, I listened to Mom and gave her that simple, pure validation of discomfort and pain. It really helped. I was also able to 'relate' real well to her discomfort by reminding her that I had gone through very similar pain when I had my operation in '82. She appreciated that.
Julie arranged for another hotel a little further away, but half the price of the nearby one. Later, she went down for dinner, and after her, I went. While there, I spoke to Lenny and to Pam. My conversation wtih Pam was nice and long. It was well past 9pm by the time I finished. I had sat outside for dinner, and it turns out they lock the doors at 9pm so I and 3 other people were locked out. We managed to waive down someone inside to unlock it for us and I headed up to ICU again.
I took the night shift at ICU, and Julie went to the hotel for the night. I was awake until around 3am, and Mom was up and down until then as welll. Then she fell asleep until 6:30am or so.
Wednesday, June 17, 2009
Heart-Valve Replacement Surgery
Mom went in for the valve replacement surgery this morning. They went back and forth on what time frame it would be, from 10am to 1pm, to 10am again to 1pm again. Finally, they came at just after 10am.
Julie and I went with her to the pre-op prep room. There we consulted with the anesthesiologist. Shortly after that, he began his work getting her ready. Julie and I gave hugs and kisses, and 'checked into' the waiting room. Then we went to drop off into the car-trunk all the 'stuff' we had from the hospital room. Whew, now we were a less encumbered and could walk more freely.
Julie was very tired, and very much wanted a bath. The night before was difficult because of the errors the nurse-staff kept making, so Julie was pretty frazzled. Still, she said she just couldn't leave the hospital while Mom was in surgery. So we stopped of for lunch in the cafeteria, and then settled into the waiting room.
Tea, coffee, smoke break, computer working; tea, coffee, smoke break, computer working... Over and over again. At around 2:30ish, someone called us on the phone at the front desk to tell us that they were proceding to put the valve into place.
Tea, coffee, smoke break, computer working; tea, coffee, smoke break, computer working... Finally at around 3:30pm, Dr Guyton came out to update us on the progress. Mom was finished with the surgery, it went well, and they were 'closing up'. They said that due to her age, they had to be extra careful with the closing.
At 4pm, Dr. Thourani came out to discuss the same stuff with us. Surgery went well. There is slight leakage around the new valve, but that's to be expected - probably permanent. The flow through the valve is way better than it was before. They decided not to use the groin aortic artery for catheter observation, and instead went in through an artery in the upper right shoulder. In closing their heart incision, they removed a small portion of one of the ribs in order to have access for the closure. The rest of closure continued and should be done soon.
At 4:30pm, the pager went off, and I took the call at the front desk. Mom was all done with surgery and in the ICU on the 4th floor. Julie was out on a smoke break, so I waited until she returned, and then we moved up there to wait another hour or so for her to get comfortable enough and conscious enough to go in and visit with.
Julie and I went with her to the pre-op prep room. There we consulted with the anesthesiologist. Shortly after that, he began his work getting her ready. Julie and I gave hugs and kisses, and 'checked into' the waiting room. Then we went to drop off into the car-trunk all the 'stuff' we had from the hospital room. Whew, now we were a less encumbered and could walk more freely.
Julie was very tired, and very much wanted a bath. The night before was difficult because of the errors the nurse-staff kept making, so Julie was pretty frazzled. Still, she said she just couldn't leave the hospital while Mom was in surgery. So we stopped of for lunch in the cafeteria, and then settled into the waiting room.
Tea, coffee, smoke break, computer working; tea, coffee, smoke break, computer working... Over and over again. At around 2:30ish, someone called us on the phone at the front desk to tell us that they were proceding to put the valve into place.
Tea, coffee, smoke break, computer working; tea, coffee, smoke break, computer working... Finally at around 3:30pm, Dr Guyton came out to update us on the progress. Mom was finished with the surgery, it went well, and they were 'closing up'. They said that due to her age, they had to be extra careful with the closing.
At 4pm, Dr. Thourani came out to discuss the same stuff with us. Surgery went well. There is slight leakage around the new valve, but that's to be expected - probably permanent. The flow through the valve is way better than it was before. They decided not to use the groin aortic artery for catheter observation, and instead went in through an artery in the upper right shoulder. In closing their heart incision, they removed a small portion of one of the ribs in order to have access for the closure. The rest of closure continued and should be done soon.
At 4:30pm, the pager went off, and I took the call at the front desk. Mom was all done with surgery and in the ICU on the 4th floor. Julie was out on a smoke break, so I waited until she returned, and then we moved up there to wait another hour or so for her to get comfortable enough and conscious enough to go in and visit with.
Tuesday, June 16, 2009
Atlanta, Heart Valve Surgery
Mom has been feeling more and more lethargic and short of breath over the past 6 weeks. This is due to the heart-valve calcification condition she was diagnosed with several years ago. The prognosis was that the condition would continue to get worse over time, leading to congestive heart failure where breathing simply becomes more and more difficult until total heart failure.
Up to 6 weeks or so ago, the situation has been getting slowly worse, but not to a point where life was very seriously curtailed. In the past 6 weeks, however, the situation has become precipitously worse. It has gotten uncomfortable enough for her that when mom heard about a heart-valve replacement study at Emory hospital in Atlanta, Georgia that involved using a catheter to do the replacement rather than full blown open heart surgery, she decided to go for it. So she and Julie packed the car and they drove up to Atlanta.
I spoke to my boss about taking time off to go to Atlanta, and he agreed. I spent as much of the weekend as I could with Pam, and then drove down to Atlanta Sunday to meet Julie and Mom at the Emory Conference Hotel about 3 blocks from the hospital.
We all three spent the night in the hotel, Julie and I had a pleasant dinner outside the hotel restaurant, and in the morning went to the hospital.
Plan was to get some tests to evaulate if she was a good candidate for the Study's catheter-from-groin surgery. Turned out she was not. Calcium buildup in her aortic arteries in her groin was too excessive and the arteries were too small to support the size catheter needed for the replacement procedure.
This was disappointing, and we had to evaluate what next to do. There were three options offered: (1) valvoplasty - temporary (4 to 6 months) fix using a balloon inflation to clear the valve of calcium buildup; (2) full open heart surgery; (3) Trans-Apical procedure - enter through lower ribs with catheter tool.
Because option (3) was also part of the study and not FDA approved, the choice between options 2 and 3 had to be randomized.
Long discussions and deliberations ensued. Chosen stragegy: If option (3) was selected, she'd do it. If option (2) was selected, then do option (1) and go home to think on what to do.
Doing the latter makes sense from a "don't rush foolhardy into something" perspective, but makes for rather an emotionally stressful decision process that needs to be made going forward.
As luck would have it, the randomization selected option (3), the TransApical procedure. Mom seemed somewhat relieved about this, as were we all. Now the sweat of decision making was basically resolved.
Numerous tests followed this afternoon to ascertain Mom's fitness level prior to surgery. It seems that other than the heart valve problem and the congestive heart failure that it brought on, her health was really quite good.
The various doctors on the surgical team, one by one, showed up for introductions and pre-surgical consultations. Questions and answers. Getting to know each other personally and get comfortable with the physicians involved.
Surgery is scheduled for Wednesday. She is the 2nd patient of the day, and they said she'd probably go in at around Noon time. Probably she'll get taken for 'prep' an hour or so before that.
I asked the cardiac surgeon (Dr. Babaliomos) various technical questions regarding the heartvalve and replacement procedure:
o) The new valve is bovine valve (bio-material).
o) The old valve is simply pushed out of the way.
o) The new valve is inside a stent. This is how the old valve is pushed out of the way. The stent is placed inside the old valve and then 'sprung' open, pushing the flaps of the old one to the edges.
o) The new valve is not sutured into place, but rather stays in place by heart-action/blood-flow pressure. The new valve is slightly larger than the aortic artery aperture. Pressure of blood flow holds it pressed against the aortic exit.
o) The stent/valve combo are compressed very small, placed inside the catheter tool, and fed through the incision on the lower chest, and to the heart.
o) The heart is not stopped for the valve insertion. Rather, it is "galloped" up to 200 or so beats per minute for 15 to 30 seconds. This results in 0 efficiency in pumping, therefore 0 blood flow, and therefore no pressure to get in the way of the insertion. Once in place, the heart resumes it's normal rate and blood flow/pressure take part in holding the valve where it belogs.
The anesthesiologist stopped by earlier this afternoon while Mom and I were away on a test, so we missed him. He left message that he'd stop by in the morning. I'd like to speak with him to specifically ask "how will they know that she isn't doped and unable to move but still conscious"? Usually these days they have some kind of monitor (brain activity monitor or something) to see the expected brain-wave pattern of unconsciousness.
I may not be in yet when the anesthesiologist shows up, so I'll tell Julie to ask about this in my stead if that's the case.
Tomorrow is a big day. Many people are offering prayers and well wishes.
Up to 6 weeks or so ago, the situation has been getting slowly worse, but not to a point where life was very seriously curtailed. In the past 6 weeks, however, the situation has become precipitously worse. It has gotten uncomfortable enough for her that when mom heard about a heart-valve replacement study at Emory hospital in Atlanta, Georgia that involved using a catheter to do the replacement rather than full blown open heart surgery, she decided to go for it. So she and Julie packed the car and they drove up to Atlanta.
I spoke to my boss about taking time off to go to Atlanta, and he agreed. I spent as much of the weekend as I could with Pam, and then drove down to Atlanta Sunday to meet Julie and Mom at the Emory Conference Hotel about 3 blocks from the hospital.
We all three spent the night in the hotel, Julie and I had a pleasant dinner outside the hotel restaurant, and in the morning went to the hospital.
Plan was to get some tests to evaulate if she was a good candidate for the Study's catheter-from-groin surgery. Turned out she was not. Calcium buildup in her aortic arteries in her groin was too excessive and the arteries were too small to support the size catheter needed for the replacement procedure.
This was disappointing, and we had to evaluate what next to do. There were three options offered: (1) valvoplasty - temporary (4 to 6 months) fix using a balloon inflation to clear the valve of calcium buildup; (2) full open heart surgery; (3) Trans-Apical procedure - enter through lower ribs with catheter tool.
Because option (3) was also part of the study and not FDA approved, the choice between options 2 and 3 had to be randomized.
Long discussions and deliberations ensued. Chosen stragegy: If option (3) was selected, she'd do it. If option (2) was selected, then do option (1) and go home to think on what to do.
Doing the latter makes sense from a "don't rush foolhardy into something" perspective, but makes for rather an emotionally stressful decision process that needs to be made going forward.
As luck would have it, the randomization selected option (3), the TransApical procedure. Mom seemed somewhat relieved about this, as were we all. Now the sweat of decision making was basically resolved.
Numerous tests followed this afternoon to ascertain Mom's fitness level prior to surgery. It seems that other than the heart valve problem and the congestive heart failure that it brought on, her health was really quite good.
The various doctors on the surgical team, one by one, showed up for introductions and pre-surgical consultations. Questions and answers. Getting to know each other personally and get comfortable with the physicians involved.
Surgery is scheduled for Wednesday. She is the 2nd patient of the day, and they said she'd probably go in at around Noon time. Probably she'll get taken for 'prep' an hour or so before that.
I asked the cardiac surgeon (Dr. Babaliomos) various technical questions regarding the heartvalve and replacement procedure:
o) The new valve is bovine valve (bio-material).
o) The old valve is simply pushed out of the way.
o) The new valve is inside a stent. This is how the old valve is pushed out of the way. The stent is placed inside the old valve and then 'sprung' open, pushing the flaps of the old one to the edges.
o) The new valve is not sutured into place, but rather stays in place by heart-action/blood-flow pressure. The new valve is slightly larger than the aortic artery aperture. Pressure of blood flow holds it pressed against the aortic exit.
o) The stent/valve combo are compressed very small, placed inside the catheter tool, and fed through the incision on the lower chest, and to the heart.
o) The heart is not stopped for the valve insertion. Rather, it is "galloped" up to 200 or so beats per minute for 15 to 30 seconds. This results in 0 efficiency in pumping, therefore 0 blood flow, and therefore no pressure to get in the way of the insertion. Once in place, the heart resumes it's normal rate and blood flow/pressure take part in holding the valve where it belogs.
The anesthesiologist stopped by earlier this afternoon while Mom and I were away on a test, so we missed him. He left message that he'd stop by in the morning. I'd like to speak with him to specifically ask "how will they know that she isn't doped and unable to move but still conscious"? Usually these days they have some kind of monitor (brain activity monitor or something) to see the expected brain-wave pattern of unconsciousness.
I may not be in yet when the anesthesiologist shows up, so I'll tell Julie to ask about this in my stead if that's the case.
Tomorrow is a big day. Many people are offering prayers and well wishes.
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