Dad's made it to the SCU (Surgical Care Unit). He's fairly chipper all things considered. He's still a little out of it from the anesthesia and wired up from every possible extremity.
I'm realizing that I'm pretty tired as well from the details I forgot to put in my previous post.
They way they managed to avoid the iliac bypass since the bottom end of the aorta was marginal for the stent was to install one or two other stents - the kind they use to keep cardiac arteries open (have to get the terminology for that) - to get the clearance they needed. I say
"they" because the surgeon came by with his practice partner whom he said had been in the procedure with him.
Dad has an IV line in his neck which is something I haven't seen before. Be glad when that's gone but don't know what the plan is for that.
Don't know how long we'll be here in the hospital visiting - till dad gets tired or they throw us out I guess.
Monday, October 19, 2009
ALL GOOD!
Just finished talking to the surgeon. The whole process took towards the longer side rather than the shorter side. But the iliac bypass was not necessary, and the surgeon is happy with the absence of leakage ("type 1 or type 2" - research item). The surgeon was also pleased with the way his system had withstood the anesthesia and the procedure in general.
Dad apparently came up out of the anesthesia very well, and has already had the breathing tube removed. I warned him me might come into the recovery room with the tube, as it was the thing that annoyed him the most with his lung surgery 25 years ago.
He'll be in surgical recovery for about an hour, then on to the ICU, which is where we'll get to see him. More news after we see him.
Dad says he slept like a log last night. But Mom says she didn't sleep a wink, which seems likely given that she's spent the entire morning dozing in the wheelchair we borrowed to drive her around the hospital. Between naps she's been reading "Team of Rivals" on Dad's Kindle. Don't know what will happen when he's awake enough to want to read his book on it. Maybe she'll end up with one of her own!
Jordan
Dad apparently came up out of the anesthesia very well, and has already had the breathing tube removed. I warned him me might come into the recovery room with the tube, as it was the thing that annoyed him the most with his lung surgery 25 years ago.
He'll be in surgical recovery for about an hour, then on to the ICU, which is where we'll get to see him. More news after we see him.
Dad says he slept like a log last night. But Mom says she didn't sleep a wink, which seems likely given that she's spent the entire morning dozing in the wheelchair we borrowed to drive her around the hospital. Between naps she's been reading "Team of Rivals" on Dad's Kindle. Don't know what will happen when he's awake enough to want to read his book on it. Maybe she'll end up with one of her own!
Jordan
Getting started
Never thought I'd be live-blogging but we have the technology and not much else to do so...
Just met the surgeon. Honestly, didn't have much to say to him after our conversation on Friday. The dude is YOUNG, but we're going with trustworthy, so off to the races...
He said it will be an hour or so before he even does his incision, so we're probably going to get some breakfast. His timing was perfect since I had gone home to get the iPod and had been back for literally less than a minute when he came in to talk to us.
He's expecting the procedure to take between three and four hours, so there won't be any news for a while.
Jordan
Just met the surgeon. Honestly, didn't have much to say to him after our conversation on Friday. The dude is YOUNG, but we're going with trustworthy, so off to the races...
He said it will be an hour or so before he even does his incision, so we're probably going to get some breakfast. His timing was perfect since I had gone home to get the iPod and had been back for literally less than a minute when he came in to talk to us.
He's expecting the procedure to take between three and four hours, so there won't be any news for a while.
Jordan
Sunday, October 18, 2009
A Day in Limbo
I've been hanging out with my folks today. Dad and I went to the UU church in Princeton and caught up with some old friends. But mainly it's been a weird day, knowing that tomorrow Dad, who feels fine right now, is going to feel really really crappy at best.
He's been on Prednisone for the allergic reaction to the dye (prophylacticly
We went over some of the paperwork, and we're ready to get up at 5:15AM to be at the hospital at 5:45.
I'll be posting by SMS and e-mail as things progress tomorrow.
Wish him luck, keep him in your thoughts, and pray if you're so inclined.
Thanks
Jordan
Friday, October 16, 2009
Many Questions Answered
I had left a message with Dad's surgeon indicating that I had a couple of questions, and was very pleased to get a call back from him today. I basically had one question, but he ended up answering three for me. Overall, it was an excellent conversation.
1) Why not a bifurcated stent rather than an aortic-uni-iliac (AUI) stent?
Back in our first conversation, the surgeon had mentioned that he was uncertain from the imaging whether he would have sufficient "margins" to "land" the stent at the lower portion of the aorta. He mentioned that he would therefore be doing an iliac-iliac bypass. In today's conversation, he clarified that the bifurcated stent is definitely the first option. However he needs 17-18mm clearance at the bottom of the aorta to make that device work, which seems to be just about what there is there. So depending on what he finds, he'll install the bifurcated stent if possible. If not possible, then he'll install the AUI stent, close off the un-accessed iliac artery, and perform the iliac-iliac bypass. At least from the literature, this shouldn't impact the ultimate outcome.
2) What about the reaction to the dye?
The surgeon did mention that they are going to have to use contrast enhancers in order to do the imaging during the surgery. Given that it looks like Dad has a bad reaction to this dye, he's prescribing prednisone and benadryl before the surgery.
3) Anesthesia.
I thought I had heard of people doing this procedure a spinal block rather than general anesthesia. The surgeon said that one of the larger risks in this procedure is going to be the general anesthesia. And that he has done this with local, since that doesn't achieve the immobilization that is necessary for precise placement of the stent, that is far less preferable. The only issue about the general anesthesia is whether his heart is strong enough to tolerate the general. (At this point, I don't how those things interact, but I don't think I need to right now.) His assessment based on the input from the cardiologist, is that this should not be a problem either.
So we're all "go" for Monday morning. I'll be flying down on Saturday morning.
1) Why not a bifurcated stent rather than an aortic-uni-iliac (AUI) stent?
Back in our first conversation, the surgeon had mentioned that he was uncertain from the imaging whether he would have sufficient "margins" to "land" the stent at the lower portion of the aorta. He mentioned that he would therefore be doing an iliac-iliac bypass. In today's conversation, he clarified that the bifurcated stent is definitely the first option. However he needs 17-18mm clearance at the bottom of the aorta to make that device work, which seems to be just about what there is there. So depending on what he finds, he'll install the bifurcated stent if possible. If not possible, then he'll install the AUI stent, close off the un-accessed iliac artery, and perform the iliac-iliac bypass. At least from the literature, this shouldn't impact the ultimate outcome.
2) What about the reaction to the dye?
The surgeon did mention that they are going to have to use contrast enhancers in order to do the imaging during the surgery. Given that it looks like Dad has a bad reaction to this dye, he's prescribing prednisone and benadryl before the surgery.
3) Anesthesia.
I thought I had heard of people doing this procedure a spinal block rather than general anesthesia. The surgeon said that one of the larger risks in this procedure is going to be the general anesthesia. And that he has done this with local, since that doesn't achieve the immobilization that is necessary for precise placement of the stent, that is far less preferable. The only issue about the general anesthesia is whether his heart is strong enough to tolerate the general. (At this point, I don't how those things interact, but I don't think I need to right now.) His assessment based on the input from the cardiologist, is that this should not be a problem either.
So we're all "go" for Monday morning. I'll be flying down on Saturday morning.
Wednesday, October 14, 2009
Background and Numbers
At least one person has asked if this surgery is in fact indicated for someone of Dad's age and condition. Beyond the assurances of the surgeon, I think so. Here's one article suggesting that it is:
Abdominal Aortic Aneurysm Repair Outcomes For Seniors Reviewed
Another thing that people tell you to do is determine the rates at which these surgerys are done at the hospital you're planning on using. I did not find these figures easy to come by. But here's what I found for New Jersey hospitals. By happenstance EVAR is one of the six or eight procedures that New Jersey has chosen to report on. Reassuring for me, but I have no idea what you would do if you were having something else done. But the data are for 2005, so while better than nothing, they're probably only marginally reflective of what's happening now.
In summary: At the hospital dad is going to, in 2005 they performed 19 of these procedures, meeting "threshold 1" for procedure frequency (10), but not threshold 2 (32). This is important because
On the other hand, none of those 17 patients died, which is encouraging. The quality data is from "Inpatient Quality Indicators - New Jersey 2005" pages 10 and 14. http://www.state.nj.us/health/healthcarequality/documents/iqi2005.pdf
Finally, the question of whether to do the single stent and bypass to ensure blood flow to both iliac arteries, or to do a bifurcated stent and supply both arteries directly. Total absent of the particulars of the case, the following article seems to indicate that the bifurcated stent is slightly preferable:
Overall, I've found the process of getting good data to be rather frustrating, and I'm very skeptical of all the people who say that if you don't do a complete statistical run-down on your prospective hospital and surgeon you're not doing due diligence. The data either aren't out there or are very hard to find. I would have expected good data from the government, who claims to have an interest in limiting health care costs and improving outcomes. And indeed the best data I've found has been from the government, but it's pretty outdated.
All in all, this is not an issue for us because A) the hospital where Dad is getting his procedure done (and the surgeon, to the best of our knowledge) are pretty good, and B) He's decided that he doesn't want to shop around anyway.
So this is about as much due diligence as I've done.
Abdominal Aortic Aneurysm Repair Outcomes For Seniors Reviewed
Another thing that people tell you to do is determine the rates at which these surgerys are done at the hospital you're planning on using. I did not find these figures easy to come by. But here's what I found for New Jersey hospitals. By happenstance EVAR is one of the six or eight procedures that New Jersey has chosen to report on. Reassuring for me, but I have no idea what you would do if you were having something else done. But the data are for 2005, so while better than nothing, they're probably only marginally reflective of what's happening now.
In summary: At the hospital dad is going to, in 2005 they performed 19 of these procedures, meeting "threshold 1" for procedure frequency (10), but not threshold 2 (32). This is important because
One study that evaluated the impact of total vascular surgery volume found a significant effect for both ruptured and intact aneurysms.40 Empirical evidence shows that AAA repair volume and mortality—after adjusting for age, sex, and APR-DRG—are independently and negatively correlated with each other (r=-.35, p<.001).41
40 Amundsen S, Skjaerven R, Trippestad A, et al. Abdominal aortic aneurysms. Is there an association between surgical volume, surgical experience, hospital type and operative mortality? Members of the Norwegian Abdominal Aortic Aneurysm Trial. Acta Chir Scand 1990;156(4):323-7; discussion 327-8
41 Nationwide Inpatient Sample.
AHRQ Quality Indicators
Guide to Inpatient Quality Indicators:
Quality of Care in Hospitals – Volume, Mortality, and Utilization
http://www.qualityindicators.ahrq.gov/downloads/iqi/iqi_guide_v31.pdf
On the other hand, none of those 17 patients died, which is encouraging. The quality data is from "Inpatient Quality Indicators - New Jersey 2005" pages 10 and 14. http://www.state.nj.us/health/healthcarequality/documents/iqi2005.pdf
Finally, the question of whether to do the single stent and bypass to ensure blood flow to both iliac arteries, or to do a bifurcated stent and supply both arteries directly. Total absent of the particulars of the case, the following article seems to indicate that the bifurcated stent is slightly preferable:
We do not know the long-term patency of a femoral artery to a femoral artery bypass graft. By placing the AUI stent, the blood supply to both limbs are at risk if the iliac portion of the device has a mechanical complication.
The Use of the Aorto-Uni-Iliac Device in the Treatment of Abdominal Aortic Aneurysms
VOLUME: 5 PUBLICATION DATE: Nov 01 2008
Issue Number: 6 Nov/Dec 08
http://vasculardiseasemanagement.com/content/the-use-aorto-uni-iliac-device-treatment-abdominal-aortic-aneurysms
Overall, I've found the process of getting good data to be rather frustrating, and I'm very skeptical of all the people who say that if you don't do a complete statistical run-down on your prospective hospital and surgeon you're not doing due diligence. The data either aren't out there or are very hard to find. I would have expected good data from the government, who claims to have an interest in limiting health care costs and improving outcomes. And indeed the best data I've found has been from the government, but it's pretty outdated.
All in all, this is not an issue for us because A) the hospital where Dad is getting his procedure done (and the surgeon, to the best of our knowledge) are pretty good, and B) He's decided that he doesn't want to shop around anyway.
So this is about as much due diligence as I've done.
Tuesday, October 13, 2009
Back on Track
Monday October 12th dad finally went in for the stress test. It sounds like his rash isn't totally gone, but it's not acute anymore.
Typically, a stress test is where they put you on a tread mill and run you till you drop. Well, I'm sure it's more scientific than that, but that's the common (and my) perception. This is not such a good idea for the aged and infirm, so when the Portsmouth NH hospital said they wanted to do a stress test on my mom when when she fainted dead away on Star Island in 2005(?), I was alarmed.
It turns out, we observed, that (in the words of Wikipedia), "patients ... who are unable to walk safely can be 'exercised' pharmacologically instead of by walking on a treadmill. The patient will typically receive a ... vasodilator or [a drug] which stimulates heart rate and pumping force while a cardiologist or physician assistant reviews the ECG tracing and checks blood pressure periodically."
This is the kind of test they gave mom back in 2005, and the kind they elected to give dad on Monday the 12th. We were a little surprised at the results. Although I wasn't on the phone with the doctor who gave dad the results, I gather the conversation went along the lines of, "So when did you have your heart attack?" To which my dad responded, "What heart attack?"
I knew that heart attacks leave chemical markers in the blood, but apparently they also leave scar tissue on the heart (which isn't to surprising upon reflection, since some heart muscle probably dies from lack of oxygen during the event). From the changes they saw in dad's heart, they concluded that he had had a heart attack.
There was some base-line data to work from, from a 1997 (or was it 1992 - details to be confirmed) stress test this same cardiologist had done on dad. Since then, dad did have a fairly major stroke the effects of which wore off almost completely after a couple of months. This led us to believe that it had been a minor event, but I recall the Dr. saying that though it had been largely asymptomatic, it had been relatively big.
Dad's characterization of his surgeon's attitude towards this was, "Well, that's all very interesting but we're going to do this anyway." As in fact we are.
So at this point, the EVAR stent procedure is scheduled for Monday, October 19th. Some time later this week there will be a conversation with the surgeon, at which I hope to be present by telephone so that I can ask my questions about the bypass.
Travel plans to be determined.
Nothing is Ever Simple
Thursday night (October 1st) Dad called me. He had the most horrible rash, and said that he hadn't gotten much sleep the previous night. I don't think I understood just how bad it was. He had a dermatologists appointment the following day and was wondering if he should take benadryl just to get more comfortable for the night. I thought not, because if there's nothing to see, then what can the dermatologist do?
Turns out that was not a problem (unfortunately). Dad took the benadryl and was still in extreme discomfort overnight. The dermatologist's diagnosis was allergy to the dye used in the CAT scan, for which the only cure was topical - oatmeal baths etc.
But the stress-test folks (on Monday the 5th) took one look at him and said "No way." So for most of the week we were just "on hold" waiting to see what would happen.
In the event, they re-scheduled the stress-test for Monday the 12th.
All through this, the cardiologist's advice has been to carry on as usual, leaving out the heavy lifting (not a problem), and trips to the gym (something dad still enjoys 2 or 3 times a week).
Turns out that was not a problem (unfortunately). Dad took the benadryl and was still in extreme discomfort overnight. The dermatologist's diagnosis was allergy to the dye used in the CAT scan, for which the only cure was topical - oatmeal baths etc.
But the stress-test folks (on Monday the 5th) took one look at him and said "No way." So for most of the week we were just "on hold" waiting to see what would happen.
In the event, they re-scheduled the stress-test for Monday the 12th.
All through this, the cardiologist's advice has been to carry on as usual, leaving out the heavy lifting (not a problem), and trips to the gym (something dad still enjoys 2 or 3 times a week).
Waiting for the Shoe to Drop
Monday, September 28 dad went in for his CAT scan. I wasn't around, but by all reports it was uneventful. We waited on tenterhooks all afternoon for results because at that point we didn't really know the size of the aneurysm, nor its exact location. Anything above the renal arteries is more complicated, and anything under 5.5cm might just be a "wait and see" kind of thing.
No news.
Tuesday we're still waiting on tenterhooks. Finally, in the afternoon dad unearths a piece of paper that says "We'll call you with results 48 hours after your CAT scan. After some good natured ribbing from me and serious kvetching from mom, we attempt to relax and wait for Wednesday.
Wednesday, just as I'm walking in to the local store with Zac to buy him some clothes, my cell phone rings. I had been at pains to make sure that I could participate in the conversation my parents had with the surgeon and he called while he was talking to them.
That is when we learned all the particulars about the aneurysm (6cm infra-renal), and when the surgeon let us know his preference for a procedure: a stent. The Wikipedia article is brief, but gives you the idea: you thread a hose liner up into the widened part of the artery to relieve the pressure on the (presumably) weakened arterial walls. Relieved of pressure, they then settle back around the "liner" (stent) and all is well.
The slight complication, which I'm still trying to understand, involves the fact that, due to an insufficient "landing zone" at the bottom end of the stent, the surgeon expects that he will be unable to supply blood to both iliac arteries. He needs an 18mm margin at the top and bottom, and has only 17mm at the bottom. I have no idea what the tolerances are here, but he clearly doesn't believe that he'll get what he needs.
So the plan is to do a bypass from below the end of the stent to the other (right, I think) iliac artery. I don't understand why that's preferable to one of the bifurcated stents illustrated in the wikimedia commons picture.
So at that point, the major piece of work-up remaining before the surgery was a cardiac stress test, scheduled for Monday, Oct 5th. Surgery was scheduled for Monday, Oct 12.
No news.
Tuesday we're still waiting on tenterhooks. Finally, in the afternoon dad unearths a piece of paper that says "We'll call you with results 48 hours after your CAT scan. After some good natured ribbing from me and serious kvetching from mom, we attempt to relax and wait for Wednesday.
Wednesday, just as I'm walking in to the local store with Zac to buy him some clothes, my cell phone rings. I had been at pains to make sure that I could participate in the conversation my parents had with the surgeon and he called while he was talking to them.
That is when we learned all the particulars about the aneurysm (6cm infra-renal), and when the surgeon let us know his preference for a procedure: a stent. The Wikipedia article is brief, but gives you the idea: you thread a hose liner up into the widened part of the artery to relieve the pressure on the (presumably) weakened arterial walls. Relieved of pressure, they then settle back around the "liner" (stent) and all is well.
The slight complication, which I'm still trying to understand, involves the fact that, due to an insufficient "landing zone" at the bottom end of the stent, the surgeon expects that he will be unable to supply blood to both iliac arteries. He needs an 18mm margin at the top and bottom, and has only 17mm at the bottom. I have no idea what the tolerances are here, but he clearly doesn't believe that he'll get what he needs.
So the plan is to do a bypass from below the end of the stent to the other (right, I think) iliac artery. I don't understand why that's preferable to one of the bifurcated stents illustrated in the wikimedia commons picture.
So at that point, the major piece of work-up remaining before the surgery was a cardiac stress test, scheduled for Monday, Oct 5th. Surgery was scheduled for Monday, Oct 12.
Jordan Sr's Aneurysm Drama Begins
This section of blog entries will be about Jordan Sr., who's having one of those health episodes that happen when you're 89 years old. Actually, our story starts when he was just about to turn 89, on September 24th, 2009. I was planning to surprise him for his birthday and just show up on the eve - September 24th, for what I expected would be a quiet but celebratory day on the the 25th.
While my train was pulling in to Penn Station in New York (from Albany), I got a text message from Margy saying that my dad had an aortic aneurysm. That's the brave new world: bad news by text message.
As you might imagine, much telephone calling ensued while waiting to change trains in New York, culminating in a taxi ride from Princeton Junction to my folks' house.
The story: Dad had what turned out to be a urinary condition that led him to his doctor that day. The doctor (the urologist, I think) was sufficiently concerned that he walked dad over to the hospital for the ultrasound. That's when they discovered the aneurysm.
These come in several sizes: the "don't worry about it but watch it" size, the "holy smokes, this could go at any time" size, and the "we'd better do something about this" size. Dad has the medium sized one - close to 6cm in diameter, where the limit of "don't worry about it" is 5.5cm.
Aneurysms also come in several locations, the most common being below the renal arteries and above the iliac ones. The renal location is why they found this in the course of looking at what was wrong with his kidneys. And that's exactly where his is. The wikimedia commons picture is quite good; follow the link if you're interested; the Wikipedia article is quite good as well. All of this was, of course, unknown to us on that Thursday night, so we were fairly stressed out.
In fact, at that point he had had the ultrasound, and was to be scheduled for a CAT scan some time Friday, with the admonition from the nurse at the practice that if radiology didn't call, we were to call her to make sure the appointment was scheduled for sooner rather than later. In the event, they called and scheduled the CAT scan for Monday, which the cardiologists were satisfied with.
So I stayed the weekend and went home on Sunday night.
Sunday, June 28, 2009
Meg and Tonia in Cambridge, England
Here are Meg and Tonia when we visited Tonia and John and Sarah while they were living in Cambridge, England.
Saturday, February 21, 2009
Home At Last
Here it is 10:30 on Saturday night and we are in fact at home.
Somehow, this didn't work out as straight-forwardly as I had expected. Earlier in the week, in response to one of my posts, our friend John remarked at how difficult it can be for doctors to see the patient in his entire context, rather than as a technical problem to be solved or case to be managed. John works in healthcare and has spent 25 years dealing with doctors, and has a lot of experience around the healthcare system in various capacities.
His comment got me thinking about all the difficulties we had with Zac's IV, and by Saturday afternoon I had decided that if there was a problem with the IV, we could be done with it. It was that realization that Zac was the patient and he (and we, as his parents) had the last word on his care. Not to be stupid of cavalier about it, but to bring our best judgement to bear with the information we got from the doctors and make what we felt would be the best decision for him. If we were trying to strengthen his immune system, and his white count was normal, he'd be much better off at home where he'd be happy (and stronger in that way in which the mind and the immune system interact) than he would be at the hospital.
I hadn't quite made it through that logic chain to the point where I realized that he could come home Saturday night until our friend John arrived. When he saw Zac (and as I've said, he has a lot of experience with people in hospitals), his reaction was, "What are you still doing here?" Reenforced by the night-shift nurse's reaction of "What are you still doing here?"
Zac was a willing co-conspiritor, and while I was out at the first at of a local theatre production (which I left when I realized it was stupid to be there when Margy and Zac and John were being social in the hospital - the I'd gotten the ticket earlier...), and while Margy was out getting Indian food, John and the nurse and Zac got together and planned. The nurse called the doctor (not the one who we'd seen most of the week, but his partner, who was on this weekend), and long-story slightly shorter, she arranged for the discharge.
Margy, Zac, John, and I arrived home fairly short order at about 10:30PM. Zac dozed on the couch while the three of us chatted for quite a while. It was very pleasant all being home.
I wondered why it took an external catalyst to make this change happen, and realized that the dynamic between patients, parent, and doctor is really not designed for proactive participation by the parents, at least in this kind of emergency situation. Perhaps we should of second-guessed the surgeon when Zac was in extremis on Friday, but I think not. It was more like, "Our son is really sick, you know how to fix this, do what you need to do."
On the other hand, by late in the week, we needed a lot of information to be able to make an informed decision about how long Zac should have remained in the hospital, and we weren't asking for that. And finally we needed the perspective and gumption to say, "This is the wrong plan for us. If you need a blood sample every day, we can bring him in. What should we be watching for? Why not do oral antibiotics at home? He needs to be home."
It was hard to transition from one mode to the other. So John was our catalyst to do that, and we thank him for it. (Plus for being such fun to be around, and a generous guy to boot!)
So I don't know if there's a wider lesson in that or not, but I put the experience out there for you all to contemplate. We're just happy to be home!
Somehow, this didn't work out as straight-forwardly as I had expected. Earlier in the week, in response to one of my posts, our friend John remarked at how difficult it can be for doctors to see the patient in his entire context, rather than as a technical problem to be solved or case to be managed. John works in healthcare and has spent 25 years dealing with doctors, and has a lot of experience around the healthcare system in various capacities.
His comment got me thinking about all the difficulties we had with Zac's IV, and by Saturday afternoon I had decided that if there was a problem with the IV, we could be done with it. It was that realization that Zac was the patient and he (and we, as his parents) had the last word on his care. Not to be stupid of cavalier about it, but to bring our best judgement to bear with the information we got from the doctors and make what we felt would be the best decision for him. If we were trying to strengthen his immune system, and his white count was normal, he'd be much better off at home where he'd be happy (and stronger in that way in which the mind and the immune system interact) than he would be at the hospital.
I hadn't quite made it through that logic chain to the point where I realized that he could come home Saturday night until our friend John arrived. When he saw Zac (and as I've said, he has a lot of experience with people in hospitals), his reaction was, "What are you still doing here?" Reenforced by the night-shift nurse's reaction of "What are you still doing here?"
Zac was a willing co-conspiritor, and while I was out at the first at of a local theatre production (which I left when I realized it was stupid to be there when Margy and Zac and John were being social in the hospital - the I'd gotten the ticket earlier...), and while Margy was out getting Indian food, John and the nurse and Zac got together and planned. The nurse called the doctor (not the one who we'd seen most of the week, but his partner, who was on this weekend), and long-story slightly shorter, she arranged for the discharge.
Margy, Zac, John, and I arrived home fairly short order at about 10:30PM. Zac dozed on the couch while the three of us chatted for quite a while. It was very pleasant all being home.
I wondered why it took an external catalyst to make this change happen, and realized that the dynamic between patients, parent, and doctor is really not designed for proactive participation by the parents, at least in this kind of emergency situation. Perhaps we should of second-guessed the surgeon when Zac was in extremis on Friday, but I think not. It was more like, "Our son is really sick, you know how to fix this, do what you need to do."
On the other hand, by late in the week, we needed a lot of information to be able to make an informed decision about how long Zac should have remained in the hospital, and we weren't asking for that. And finally we needed the perspective and gumption to say, "This is the wrong plan for us. If you need a blood sample every day, we can bring him in. What should we be watching for? Why not do oral antibiotics at home? He needs to be home."
It was hard to transition from one mode to the other. So John was our catalyst to do that, and we thank him for it. (Plus for being such fun to be around, and a generous guy to boot!)
So I don't know if there's a wider lesson in that or not, but I put the experience out there for you all to contemplate. We're just happy to be home!
And then sometimes it sucks
Zac's white blood cell count is finally in the normal range. But his temp has been a little elevated over the last 24 hours. The surgeon we've been with during this entire process is off this weekend (I was wondering if he was ever off), and the hospital's other surgeon came by and said they were waiting for the temp to be normal for 24 hours.
I think at that point the whole thing came crashing down on Zac. He's very upset. Compounded by the fact that the IV he has seems tenuous - it doesn't hurt most of the time, but he (and we, and the nurse) are trying to figure out if it's well placed. Getting this new one in yesterday was quite a hassle, and required the resident expert at these things (who happens to be A) the ER nurse we originally saw, and who placed his original line 8 days ago, and B) the husband of one of the crackerjack nurses on the floor). So he really doesn't want to go through that again.
It seemed like we could get this one to work for the last two anti-biotic treatments, but if we're here for 24 more hours, I think we'll have to be really careful with it. The current nurse is totally with the process, but honestly, there is some variation among the nursing staff, and I suspect we'll want to stay on top of them so this doesn't turn in to a problem.
So if you had any thought of visiting, this would be a really good moment - we (all) are going to need as much distraction as we can get today.
I think at that point the whole thing came crashing down on Zac. He's very upset. Compounded by the fact that the IV he has seems tenuous - it doesn't hurt most of the time, but he (and we, and the nurse) are trying to figure out if it's well placed. Getting this new one in yesterday was quite a hassle, and required the resident expert at these things (who happens to be A) the ER nurse we originally saw, and who placed his original line 8 days ago, and B) the husband of one of the crackerjack nurses on the floor). So he really doesn't want to go through that again.
It seemed like we could get this one to work for the last two anti-biotic treatments, but if we're here for 24 more hours, I think we'll have to be really careful with it. The current nurse is totally with the process, but honestly, there is some variation among the nursing staff, and I suspect we'll want to stay on top of them so this doesn't turn in to a problem.
So if you had any thought of visiting, this would be a really good moment - we (all) are going to need as much distraction as we can get today.
Friday, February 20, 2009
Progress, but not as much as we would like
The good news: The surgeon came by and closed up the rest of the incision.
The bad news: Zac's white cell counts are still on the high side of normal, and his temperature is a little (and I mean a very little) elevated. So it's 24 more hours of anti-biotics and the expectation that he'll be out of here tomorrow.
After reading the chart, the surgeon thought long and hard about where to go with this, and that's what he finally concluded. Though not how we wished it had come out, given the circumstances it's a decision that makes perfect sense.
At the end of that visit, Zac's anti-biotic (every 6 hours) was finishing up and he remarked that the IV site was feeling sore. The nurse is going to have the phlebotomist (?) come by, but me might end up with a new IV. At this, he is seriously annoyed since he says they're very uncomfortable to put in. I don't know, I've only had one briefly.
Zac & I watched another disc of Lord of the Rings last night on the Mac that's on loan, and concluded that Macs are much better at reading damaged DVDs than PCs are - it just very nicely says "skipping damaged part of disk" and goes on. Mostly, you don't notice. So I guess we need to use Meg's IMac to read the second LOTR disk and copy it so we have something playable on all players.
Thanks for all the comments, cards, and e-mails. They really do make us feel connected and we appreciate everybody's thougths - humorous, serious, and other (?).
Aside from that, it's pretty quiet.
Jordan
The bad news: Zac's white cell counts are still on the high side of normal, and his temperature is a little (and I mean a very little) elevated. So it's 24 more hours of anti-biotics and the expectation that he'll be out of here tomorrow.
After reading the chart, the surgeon thought long and hard about where to go with this, and that's what he finally concluded. Though not how we wished it had come out, given the circumstances it's a decision that makes perfect sense.
At the end of that visit, Zac's anti-biotic (every 6 hours) was finishing up and he remarked that the IV site was feeling sore. The nurse is going to have the phlebotomist (?) come by, but me might end up with a new IV. At this, he is seriously annoyed since he says they're very uncomfortable to put in. I don't know, I've only had one briefly.
Zac & I watched another disc of Lord of the Rings last night on the Mac that's on loan, and concluded that Macs are much better at reading damaged DVDs than PCs are - it just very nicely says "skipping damaged part of disk" and goes on. Mostly, you don't notice. So I guess we need to use Meg's IMac to read the second LOTR disk and copy it so we have something playable on all players.
Thanks for all the comments, cards, and e-mails. They really do make us feel connected and we appreciate everybody's thougths - humorous, serious, and other (?).
Aside from that, it's pretty quiet.
Jordan
Thursday, February 19, 2009
Eating and Geeking
Yesterday culminated in a rollicking five-person card game with Zac's friends Neil and Stuart and their mom Diane, so Zac has chosen a quiet day today. However, lots of good things happened -- he was disconnected from his saline/dextrose drip, so he's only connected to a bag of fluid when they are putting antibiotics into him. And he got to each actual (if bland) food today! Mashed potatoes and pork went down very easily, a rice krispy treat not so well.
The three of us have been sitting around here most of the day working and playing on our various laptops. It's just exciting for Zac to be able to walk down the hall without pushing some medical equipment along with him. And -- hamburger for dinner! Jordan scored some ketchup from the cafeteria, even though it's not on the approved list for bland diets -- we like to live on the wild side.
The three of us have been sitting around here most of the day working and playing on our various laptops. It's just exciting for Zac to be able to walk down the hall without pushing some medical equipment along with him. And -- hamburger for dinner! Jordan scored some ketchup from the cafeteria, even though it's not on the approved list for bland diets -- we like to live on the wild side.
Slow but Steady
We just got another visit from the surgeon - he's been in every day monitoring Zac's progress and deciding about closing up the incision. Today's news was mostly good: On from clear liquids to not-so-clear liquids (including chocolate milk)! And the IV will only be hooked up for antibiotics.
The sobering news is that his white blood cell count is still a tad high, which is why the antibiotics continue. I casually remarked to the surgeon that I was surprised at how persistent the infection was, and he (in his very measured and balanced way) said that the amount of periotonitis that Zac had was serious and that he wasn't surprised that it was taking this long to clear up. I think it's only sinking in now as to just how narrowly we dodged this bullet - and though we're 98% of the way there, we not all there yet. It will be good to get out of the hospital, but that goal always seems to be two days away.
We had tickets for Cirque Elioze at the Flynn for Wednesday. When we thought this was going to be simpler, we had fantasies of going together. In the event, Jordan went with Lindi and managed to eat at A Single Pebble, which I've been wanting to do for a long time. Margy did double duty at the hospital Tuesday and Wednesday nights.
I think a high-point for Zac was when his friends Neil and Stuart (and their mom) came by for a long session of the card game "Munchkins," which passed most of the afternoon and early evening rather pleasantly. Jordan got roped in to the early part, and Margy took over for him after he left.
Zac's fencing coach came by, but not finding any "Zac" or "Isaac" Young's registered at the hospital, went home. Now I have guilt for having named him "Christopher Isaac (Zac) Young". I'm afraid this is going to be a hassle for the rest of his life. He can change it if he wants, I suppose.
Margy and I got a fair amount of work done early in the week when Zac was sicker, but now that he's more active, it's harder - we spend more time playing games and hanging out. Overall an improvement, but not so good for productivity. As I mentioned, there is wi-fi in the room and Zac has spent some time on a lovely MacBook that's been on loan to our house from our generous friend John. It also plays movies far more effectively than my old laptop.
So Zac's finding ways to pass the time. The nurse pointed out that, had it not been break week, Zac would have had a tutor starting Monday. That would have been a laugh since he was barely conscious. Depending on when he can get back to school, we may end up doing that next week. Margy has e-mailed his teachers and we good a lovely note from his World History teacher.
This isn't exactly the kind of routine one wants to settle in to, but it has given me a little more insight into what it must be like to have a chronically ill child - an experience I would gladly pass by, thank you very much. But we do have a scheme for how things go, in place now just as (I hope) we no longer need it.
The sobering news is that his white blood cell count is still a tad high, which is why the antibiotics continue. I casually remarked to the surgeon that I was surprised at how persistent the infection was, and he (in his very measured and balanced way) said that the amount of periotonitis that Zac had was serious and that he wasn't surprised that it was taking this long to clear up. I think it's only sinking in now as to just how narrowly we dodged this bullet - and though we're 98% of the way there, we not all there yet. It will be good to get out of the hospital, but that goal always seems to be two days away.
We had tickets for Cirque Elioze at the Flynn for Wednesday. When we thought this was going to be simpler, we had fantasies of going together. In the event, Jordan went with Lindi and managed to eat at A Single Pebble, which I've been wanting to do for a long time. Margy did double duty at the hospital Tuesday and Wednesday nights.
I think a high-point for Zac was when his friends Neil and Stuart (and their mom) came by for a long session of the card game "Munchkins," which passed most of the afternoon and early evening rather pleasantly. Jordan got roped in to the early part, and Margy took over for him after he left.
Zac's fencing coach came by, but not finding any "Zac" or "Isaac" Young's registered at the hospital, went home. Now I have guilt for having named him "Christopher Isaac (Zac) Young". I'm afraid this is going to be a hassle for the rest of his life. He can change it if he wants, I suppose.
Margy and I got a fair amount of work done early in the week when Zac was sicker, but now that he's more active, it's harder - we spend more time playing games and hanging out. Overall an improvement, but not so good for productivity. As I mentioned, there is wi-fi in the room and Zac has spent some time on a lovely MacBook that's been on loan to our house from our generous friend John. It also plays movies far more effectively than my old laptop.
So Zac's finding ways to pass the time. The nurse pointed out that, had it not been break week, Zac would have had a tutor starting Monday. That would have been a laugh since he was barely conscious. Depending on when he can get back to school, we may end up doing that next week. Margy has e-mailed his teachers and we good a lovely note from his World History teacher.
This isn't exactly the kind of routine one wants to settle in to, but it has given me a little more insight into what it must be like to have a chronically ill child - an experience I would gladly pass by, thank you very much. But we do have a scheme for how things go, in place now just as (I hope) we no longer need it.
Wednesday, February 18, 2009
The Boring Part
Zac is on clear liquids now, which is a great change of pace. He's also down to one IV (down from a total of five hookups when he came out of the OR). Zac did have a single room, which had no view but good cell coverage. Now he's the only person in a double room with a lovely southern view and a lot of light, but no cell coverage. Go figure. The wi-fi signal here isn't as strong, but it seems good enough.
I had fantasies of his going home tomorrow, but before I got here the surgeon came by and looked at the wound. He decided to wait another day before closing up the last of it. Zac's white blood cell count is also still a little high, so I think they're upping the IV anti-biotic. So now Friday looks more possible, but that assumes progress, so we'll see.
People have been very generous with the dinner offerings. Normally we eat well off of our left-overs, but of course we cleared them all out for the trip that didn't happen. Margy and I have been alternating nights at the hospital, but the other person just seems to go home to sleep and do the minimum necessary (chickens, cats, etc). So we've been eating well off of the largess of others. Nice to have friends who cook so well.
We may try to get some of Zac's buddies over for a Monopoly game this afternoon or tomorrow. Meanwhile Margy and I work (when not posting to the blog), which is kind of odd.
I had fantasies of his going home tomorrow, but before I got here the surgeon came by and looked at the wound. He decided to wait another day before closing up the last of it. Zac's white blood cell count is also still a little high, so I think they're upping the IV anti-biotic. So now Friday looks more possible, but that assumes progress, so we'll see.
People have been very generous with the dinner offerings. Normally we eat well off of our left-overs, but of course we cleared them all out for the trip that didn't happen. Margy and I have been alternating nights at the hospital, but the other person just seems to go home to sleep and do the minimum necessary (chickens, cats, etc). So we've been eating well off of the largess of others. Nice to have friends who cook so well.
We may try to get some of Zac's buddies over for a Monopoly game this afternoon or tomorrow. Meanwhile Margy and I work (when not posting to the blog), which is kind of odd.
No more nose tube!
The doctor came by at midday yesterday and pulled out the naso-gastric tube, which was way longer than we realized. That's one fewer tube attached to Zac!
The plan for Wednesday is to start clear liquids to see how it goes.
The plan for Wednesday is to start clear liquids to see how it goes.
Tuesday, February 17, 2009
Lots of Progress
Not only is Zac feeling much more like himself, but, earlier than we expected, the surgeon came by and removed his nose-tube. Since that was actually the most uncomfortable part of the whole event so far (aside from the occasional dressing change), this is big news.
Zac is now pretty much himself (aside from the IV in his arm) and the remaining open wound in his abdomen (one inch, down from about five). But much more comfortable.
Zac is now pretty much himself (aside from the IV in his arm) and the remaining open wound in his abdomen (one inch, down from about five). But much more comfortable.
Progress, but not home yet
Saturday Zac was pretty zoned-out from the surgery, but we were all happy that the crisis was over and he was on the mend.
Sunday was slow, and by the end of the day Zac started getting pretty uncomfortable.
Monday was tough, with no visible signs of progress until....
After dinner-time (about 7 or so) things started to look up. His intestines began to show signs of life, and though he was still uncomfortable with the nose-tube, his cough had gone away. He just had better energy.
We (Jordan spent the night) got a good night's sleep thanks to nurse Dawn who grouped as many of her procedures at the beginning of the shift as possible. His intestines had showed signs of life Sunday evening during some of his walks, so the surgeon has left his NG tube disconnected, for possible removal later today (we hope) or tomorrow (more likely). That will be the biggest milestone in his recovery in terms of quality of life.
But his energy today is much much better. He's basically himself, but annoyed that this part isn't over yet.
We've discovered wi-fi in the room (though we probably wouldn't have used it beforehand anyway), so we may be on line a little more.
But for the first time since Friday, it feels like this could end, which would be nice.
Sunday was slow, and by the end of the day Zac started getting pretty uncomfortable.
Monday was tough, with no visible signs of progress until....
After dinner-time (about 7 or so) things started to look up. His intestines began to show signs of life, and though he was still uncomfortable with the nose-tube, his cough had gone away. He just had better energy.
We (Jordan spent the night) got a good night's sleep thanks to nurse Dawn who grouped as many of her procedures at the beginning of the shift as possible. His intestines had showed signs of life Sunday evening during some of his walks, so the surgeon has left his NG tube disconnected, for possible removal later today (we hope) or tomorrow (more likely). That will be the biggest milestone in his recovery in terms of quality of life.
But his energy today is much much better. He's basically himself, but annoyed that this part isn't over yet.
We've discovered wi-fi in the room (though we probably wouldn't have used it beforehand anyway), so we may be on line a little more.
But for the first time since Friday, it feels like this could end, which would be nice.
Monday, February 16, 2009
Still not eating
Zac is progressing, but slowly. The post-appendix-rupture infection in his gut seems to have been defeated, based on his white blood cell count, temperature, and the way that the open incision looked this morning. The surgeon felt good enough about it to close up five of the six inches of the wound, leaving an opening the size of a peach pit. We expect he'll close it completely tomorrow. Fewer inches of open wound should decrease Zac's pain.
He still has very little energy, though, and his intestines don't show much sign of wanting to get back into the digestion business. Until that happens, Zac is stuck with an uncomfortable tube up his nose to drain his stomach. And it doesn't seem to work very well -- even constant fussing by the nurses doesn't keep the tube draining consistently. It's frustrating.
None of us realized how serious this was for the first day or two -- really life-threatening -- and how long it would take for Zac to bounce back. The drill is that he sleeps, takes a tiny walk, sleeps, does breath exercises, watches a video, walks, and sleeps again. Jordan and I take turns hanging out in the room, partly because he needs help getting in and out of bed, and partly because we can't think of anywhere else to be.
He still has very little energy, though, and his intestines don't show much sign of wanting to get back into the digestion business. Until that happens, Zac is stuck with an uncomfortable tube up his nose to drain his stomach. And it doesn't seem to work very well -- even constant fussing by the nurses doesn't keep the tube draining consistently. It's frustrating.
None of us realized how serious this was for the first day or two -- really life-threatening -- and how long it would take for Zac to bounce back. The drill is that he sleeps, takes a tiny walk, sleeps, does breath exercises, watches a video, walks, and sleeps again. Jordan and I take turns hanging out in the room, partly because he needs help getting in and out of bed, and partly because we can't think of anywhere else to be.
Saturday, February 14, 2009
Zac's appendix adventure
Who knows when Zac's appendix burst -- it could have been as early as Wednesday -- but what appeared to be a garden-variety stomach bug escalated into enough pain that Jordan took him to the ER at 5am Friday morning. A cat scan showed a lot of fluid in his abdomen, so they operated through a 6-inch vertical incision just below his navel. There was goo all over his innards, so they removed what was left of the appendix and all the yuck they could find. They left the incision open so that they can monitor it for infection for a few days before they tape or stitch it shut.
Friday night night, Zac had every known tube and wire attached to him. The spinal block wore off at about midnight and they gave him a morphine machine not unlike the one that my mom had when she was dying of cancer. It doesn't drip though -- he can push a button to get a small dose, and the machine won't give another dose for 6 minutes. He slept most of the night and today, although the nurses have marched him around the halls a few times, and he has to suck on a plastic gadget 10 times once an hour to get air deep into his lungs.
He can't eat or drink anything -- not even water -- until his digestion shows signs of restarting. He's got a tube up his nose and down into his stomach to drain whatever might be in there, because otherwise he'll throw it up. Now we know that stomach bile looks exactly like pond scum. He's got saline with glucose dripping into him, along with two broad spectrum antibiotics that we hope will knock off the appendix detritus.
Zac is pretty limp and uncomfortable, and talking is hard with the nose tube, so we'll see when he can talk on the phone or have visitors. We've been taking turns hanging out with him, and the nurses set up a fold-out chair so one of us can sleep in the room. (Our local hospital is a pretty excellent place to go through an experience like this.) The doctor is talking about a 3-5 day hospital stay. Until his guts heal enough that they can tape or sew the incision closed, and until he starts be able to digest anything, he's not going anywhere.
Friday night night, Zac had every known tube and wire attached to him. The spinal block wore off at about midnight and they gave him a morphine machine not unlike the one that my mom had when she was dying of cancer. It doesn't drip though -- he can push a button to get a small dose, and the machine won't give another dose for 6 minutes. He slept most of the night and today, although the nurses have marched him around the halls a few times, and he has to suck on a plastic gadget 10 times once an hour to get air deep into his lungs.
He can't eat or drink anything -- not even water -- until his digestion shows signs of restarting. He's got a tube up his nose and down into his stomach to drain whatever might be in there, because otherwise he'll throw it up. Now we know that stomach bile looks exactly like pond scum. He's got saline with glucose dripping into him, along with two broad spectrum antibiotics that we hope will knock off the appendix detritus.
Zac is pretty limp and uncomfortable, and talking is hard with the nose tube, so we'll see when he can talk on the phone or have visitors. We've been taking turns hanging out with him, and the nurses set up a fold-out chair so one of us can sleep in the room. (Our local hospital is a pretty excellent place to go through an experience like this.) The doctor is talking about a 3-5 day hospital stay. Until his guts heal enough that they can tape or sew the incision closed, and until he starts be able to digest anything, he's not going anywhere.
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