Thursday, January 31, 2008
Wednesday, January 30, 2008
"God has created me to do Him some definite service; He has committed some work to me which He has not committed to another. I have my mission—I may never know it in this life, but I shall be told it in the next. I am a link in a chain, a bond of connection between persons. He has not created me for naught. I shall do good. I shall do his work. I shall be an angel of peace, a preacher of truth in my own place while not intending it—if I do but keep His commandments. Whatever, wherever I am, I can never be thrown away. If I am in sickness, my sickness may serve Him; in perplexity, my perplexity may serve Him; if I am in sorrow, my sorrow may serve Him. He does nothing in vain. He knows what He is about. He may take away my friends, He may throw me among strangers, He may make me feel desolate, make my spirits sink, hide my future from me—still He knows what He is about. Therefore, I will trust Him."
—The Venerable John Henry Cardinal Newman (1801-1890)
Tuesday, January 29, 2008
There is no question that David has an ASD (atrial septal defect), a hole between his atria (the two upper chambers of the heart). This is something that has been there undetected all his life, but it finally got to a point that the right side of his heart became enlarged as a result, which caused blood to flow in the wrong direction, which allowed a clot that otherwise would have been filtered out by his lungs to travel to his brain, thus causing a stroke. There is no question that this hole must be closed. From what I understand, if you only have an ASD this is entirely straightforward, but, in David's case, there is "communication" in the lower chambers of the heart as well. I found out tonight, "communication" simply means a hole (i.e. when you open a window, there is "communication" between inside and outside). I remember the doctor saying in November that there was communication between his left atrium and right ventricle - I even remember him drawing a diagram of the 4 chambers of the heart and drawing an arrow from the left atrium to the right ventricle (but this sounds absurd to my doctor friend, so maybe I am remembering incorrectly). It may be that there is a hole between the two ventricles (lower chambers of the heart) that has not been detected. It is clear that there is more going on than just the one hole, the ASD. This is something that has been known since his initial tests in November, but which was not communicated clearly to us. My friend tonight expressed that once the ASD is closed more tests can be run, and it will be more clear where the other problem is, because the one problem will be taken care of - thus clearing the view in terms of blood flow and where the other issue might be.
Regardless of what else is going on, David does need the ASD closed. That is the next step, and as soon as the doctors have set up an appointment for that, we will go to Sacramento to have that done. It is our understanding that while he is there undergoing that procedure, testing will be going on at the same time to look for the other issue as well.
Well, there you have it - the situation as best I understand it right now.
Monday, January 28, 2008
This will definitely take place on a Tuesday - although what Tuesday it will be we do not know yet. We are definitely on a "need to know" basis around here! Anyway, it was a relief to get that call.
This time the doctor was very open to answering questions, but we're not entirely comfortable with the answers. We feel like we are still where we were before we went in.
The point of the appointment was to go over the recent MRI results, which we didn't really do. He pretty much gave us a recap of where we stand and reminded us that nothing can be done for David's heart until 3 or 4 months after the stroke anyway. I then jumped in and said, "At this point it has been 3 months." David asked if we should expect surgery within the next 2 months or so, and the doctor replied, "yes."
Apparently he is having a hard time getting the doctor in Sacramento to respond to him. This was the case last time we went in as well - that he had sent information and made a call but had had no response. This time, as last time, he called the Sacramento doctor while we were in the room and got his voice mail again.
So, basically we have no new information from the extensive MRI David had two weeks ago. In reading the report ourselves we saw that the MRI (3-D with dye and the works) showed no dilation of any chambers of the heart - no enlargement - yet the tests David had here: catheterization and trans-esophageal echocardiogram DID show significant enlargement. David and I brought this up and asked about it, and the doctor just brushed it aside and said that there IS absolutely enlargement. As I said in the last post, he reminded me again that I had SEEN it. He didn't seem concerned that it did not show up on the MRI.
Maybe that's a normal, typical thing, but I don't know. I didn't push the questions and dig further and ask why one test would show one thing and one another and why he was so confident there was enlargement when this extensive MRI showed none.
He repeated to us, as he has in the past, that David's case is complicated.
Every doctor I know personally (friend or relative) that I have made this statement to has said, "Well, I'm not sure what's so complicated about it. He has an ASD (hole between the atria), and that explains the stroke. This is not unusual." We did ask the doctor today why he says David's case is complicated.
Here's the deal. It has to do with oxygen saturation in the lower part of the heart and "communication" that is happening down there that shouldn't be (I don't know what that means). He had 3 cardiologists look at David's tests back in November, and one of them postulated that David may have a hole between the bottom chambers as well. This we had not been told before. Apparently that is why David had more testing (the recent MRI). Apparently the MRI was inconclusive on that. Apparently it would be bad to patch just the hole on the top if there is one top and bottom, so we need to find out if there is a hole in the bottom too. (Notice I'm using the word "apparently" a lot, because I'm making my best guess here.)
I fail to understand how the 7 or so tests he has had (trans-esophageal echocardiogram, MRI/MRA, catheterization, etc.) have not shown this if it is there. His doctor today said if he did not hear back from the doctor in Sacramento that he would just rerun the tests.
Oh goodie - those are some pretty invasive things to go through. What will rerunning them show? I suppose if they are now specifically looking for a hole in the bottom that may cause them to approach it a bit differently - I don't know.
SO, what we know is that this doctor is having no luck getting in touch with the doctor he wants David to go to in Sacramento (and has been having basically no luck with this for nearly 3 months), that the reason he keeps calling David's situation "complicated" is because of what he is seeing in terms of oxygen levels and "communication" in the lower chambers of the heart which might indicate a hole there as well, that regardless of the recent extensive test he remains certain that there is enlargement in David's heart (right side), that HE does not think that there is an additional hole in the heart but since that is a possibility we must check, and that his preference is to close the hole up top and continue to monitor David for ongoing enlargment and "communication" after his surgery and that if there remains a problem they can always "open him up" later to take care of any additional problems.
The doctor's vision for right now is to get David up to Sacramento for the closure procedure (via catheterization) and to have them do another trans-esophageal echocardiogram while he's on the table to double-check for a hole in the bottom chambers, and if there is one to take care of it at the same time - rather than running the same tests here in town again that have been done already here and continuing to try to communicate between these two doctors . . .
That's probably a jumble of information - if so, that's about how we felt upon leaving the office. I'm not sure how I feel about all that and am waiting for it to settle in. I keep hoping we're going to get somewhere when we have one of these visits, and then nothing much seems to happen at all.
I did feel better about this appointment than about our first one. Although he was clearly in a hurry again, he didn't seem defensive or evasive. I think this doctor kind of operates with an assumption that you already know what he knows, so he leaves gaps; unfortunately we don't know what questions to ask to fill in the gaps for ourselves. He seems genuinely concerned about David's case. I'm getting the impression that he is getting grief from insurance for what he is requesting for David. I'm glad we finally got the question answered about what is so "complicated" about David's case. That at least was something new we gained.
I'm still trying to process all this, so I'm going to stop there for now.
Sunday, January 27, 2008
I'm confused as to what this all means. Can the heart enlarge that much and then decrease in size again over the course of a couple of months (without the hole having been repaired?). Did one of his tests get switched with those of another patient? Are MRI's and catheterizations so different that one could show something that much different than another - one being more accurate, the other less?
I'm eager to find out what all this means tomorrow. I hope the doctor is more amenable to questions at this appointment than he has been in the past. This seems to me like a pretty big discrepancy, but, not having a medical degree, I don't know - and I don't know how much of a difference it makes. I just want to be sure they know exactly what they're dealing with before they operate so that what needs to be done is what actually is done.
I didn't post earlier about having gotten the results, because, as I said, I am not trained to read a medical report, but the words, "There is no enlargement in any chamber of the heart" seem pretty clear. I'm praying that a lot of clarity will come forth tomorrow.
Friday, January 25, 2008
All that is gold does not glitter,
Not all those who wander are lost;
The old that is strong does not wither,
Deep roots are not reached by the frost.
From the ashes a fire shall be woken,
A light from the shadows shall spring;
Renewed shall be blade that was broken,
The crownless again shall be king.
Tuesday, January 22, 2008
(My class is actually just brief filler/backdrop for their report, so if you blink you might miss it! Actually, that's probably a good thing given the timing. They came in while I had incorrect statements up and was asking my students to correct them! Ah well, since it is supposed to be brief background filler, hopefully no one will notice, and I'll still have a job tomorrow.)
Sunday, January 20, 2008
Saturday, January 19, 2008
Friday, January 18, 2008
David has spent much time on the phone advocating for himself with the insurance company, his doctor's office, his current physical therapy place, his old physical therapy place, utilization management and lots of nurses! I know at the same time many prayers were being said for him.
He just now walked in the door and said, "Guess what?! I've been approved for 8 weeks of physical therapy back at English Oaks!"
Thank you for your prayers!
Not only has David not been progressing, but he's run into some trouble with severe knee pain, pain that feels like a torn miniscus (which he's had before, so he knows to describe it that way). In fact, the pain was such that he was getting concerned he had torn his miniscus and would now need surgery (again) on that TOO!
After speaking with my PT brother, we think the issue might be that he is doing his exercises slightly wrong, foot or leg slightly in the wrong position, and injuring his knee with all the repetitions he does daily. By being back at English Oaks he'll be working again with a therapist who knows him well and will work with him one-on-one and keep an eye on him throughout the session and who saw him through the early weeks of his recovery.
WE ARE SO THANKFUL!
Thursday, January 17, 2008
Tuesday, January 15, 2008
Monday, January 14, 2008
Sunday, January 13, 2008
I wake to sleep, and take my waking slow.
I feel my fate in what I cannot fear.
I learn by going where I have to go.
We think by feeling. What is there to know?
I hear my being dance from ear to ear.
I wake to sleep, and take my waking slow.
Of those so close beside me, which are you?
God bless the Ground! I shall walk softly there,
And learn by going where I have to go.
Light takes the Tree; but who can tell us how?
The lowly worm climbs up a winding stair;
I wake to sleep, and take my waking slow.
Great Nature has another thing to do
To you and me, so take the lively air,
And, lovely, learn by going where to go.
This shaking keeps me steady. I should know.
What falls away is always. And is near.
I wake to sleep, and take my waking slow.
I learn by going where I have to go.
- Theodore Roethke (1908-1963)
Saturday, January 12, 2008
Friday, January 11, 2008
Thursday, January 10, 2008
David has done some research and found out that the physical therapy he is receiving right now is totally inappropriate for his situation, that it is maintanence only - but he has much progress he needs yet to make - not just to maintain where he is.
He's been in contact with his former PTs, and they have told him that what's going on is totally inappropriate and that he needs to be in a different situation if he is going to progress and regain full function.
Wheels are now turning. David is on the phone lodging a formal complaint with insurance as I write this. His former PTs are going to meet with the insurance rep at English Oaks to see if they can get him back in on at least a once a week basis, because that's what his need is.
We praise God for answers to prayer we have seen already, and we would ask you once again to join in prayer for us that this may be worked out so that David may receive proper care.
Tuesday, January 08, 2008
I mentioned this to my friend Ellen tonight, and in one sentence she made it all make sense! She put it so perfectly that I had to post this:
"Now that life is getting back to normal it's obvious that it's not normal."
Let me say right up front that I'm already doing better than I was yesterday in terms of this adjustment period. From my perspective things remain pretty overwhelming but are no longer giving me knots in my stomach. I'd say from yesterday to today was a giant step forward, and we just have to keep taking the steps forward - large or small as they may be. I appreciate any prayers that were offered on our behalf, because I'm sure that's what sustained me through the day.
Part of our adjustment is David's new therapy situation as well as entering the new semester. His first session had been so very positive, but they have progressively become more disappointing. We're learning how it works, and the position he's in now is that his first visit there was conducted by a physical therapist who evaluated him thoroughly, worked with him closely and wrote up a plan. What is happening in his sessions since then is that he has an assistant who tells him what exercises to do based on the original plan and then pretty much leaves him on his own - glancing over from time to time as she works with 3 or 4 other people and telling him what exercise to do next once he finishes with one of them.
He was used to working 3 hours at a time at English Oaks with one-on-one guidance and new challenges given to him throughout every session - as they saw him make even a small advance they adjusted and pushed him further immediately, sometimes making things up on the spot specifically tailored to his needs. Today at about the half hour point the assistant told him he was done. He was shocked. He hadn't been given anything new and had not done anything there that he could not have done on his own at home.
David, being who he is, I'm sure he did the following very graciously. He basically told the assistant that he was shocked to be done in half an hour, that he needed to be pushed, that he could have done at home what he had done there, and that the copay is really quite steep and that if he wasn't going to learn and make gains he'd rather use the money to take his wife out to a nice, fancy dinner instead (hmm . . . sounds good to me!). Given his gentle and compliant nature, I was a bit surprised he had said all that! It needed to be said, though, and I'm glad he was so forthright.
He knows she's just following orders, and she let him know that she'd make a note of it and have the physical therapist call him back and discuss his situation, so we'll see what comes of that contact.
The money really isn't the issue. The issue is whether or not he's getting what he needs, but to put it in perspective, his copay for his half hour session today that I've described above was more than what I pay to belong to a gym for an entire month. If he's getting good guidance and supervision that is going to move him forward, fine, but if all he's doing is half an hour of exercise . . . not so good.
Monday, January 07, 2008
We don't know how to do this. We've never done it before. It was evident tonight in both of us that we are both extremely stressed under the surface. I'm sure we'll figure out how to adjust, but it's going to take a while.
I am usually prepared for the upcoming semester a month before the previous semester is over. This time around I prepared nothing. There are also lots of additional details I've never had to deal with before that have to do with my grad work and how it overlaps with my teaching as I move into the process of writing my thesis. It seems I have 47 different forms to fill out immediately and get to a dozen different places, and there are things on the forms I don't know how to fill in - call to get help - and the help doesn't know how to fill it in either.
Normally none of the above would be a problem for me, because I would have been ahead of the game, but so much just fell out of my brain last semester that, although I knew this day would come, I literally forgot until today many of the normal things I had to do to be ready - and many of the extras that were looming. So I'm in major panic mode, and my stomach is in knots. I'm not even yet planned to teach tomorrow, and it's about 8:00 in the evening right now.
The stress is evident in David too, and he doesn't typically feel or show stress too readily. Over the Christmas break he had been doing exercises for 4 hours a day. That in itself is half of a full time job. Although he hasn't said this, I sense that he too is going to have quite a task to find his way as to what the balance is going to be between continued work on his therapy exercises, medical appointments, his job, and home life. He has a very strong work ethic, so I'm sure he's going to want to be at work as much as he possibly can. It's also the case that the more he can gain in terms of returned functioning on his left side early on the better, so he needs to be diligent about those exercises. Balancing just those two things is going to be tough, I think, but there also needs to be enough time to have at least some "margin" to life and to be able to engage with each other as a family, a thing we are particularly aware of after nearly losing one of us.
Today when he got home from work both he and I went to the gym. It's important for both of us to get into that routine. He can do some of his therapy there, and his presence there will encourage me to go and be more healthy. By the time we got home getting dinner on the table ended up being a rather stressful event. (As I write these words I am overhearing him in another room saying in a frustrated voice, "That's about the 20th thing I've dropped today!" I don't know if he'd agree with me or not, but I think he's fatigued and trying to do too many things in the normal way. I think we could both learn from what one of my friends said to me last semester, "You're trying to live as if life is normal, but it isn't normal, so stop it." Both he and I have a hard time easing off and holding back, but we need to, and we'll have to figure out how that is going to happen in such a way that we can still feel at peace about ourselves on the inside given who we are.)
Tomorrow he has a PT appointment, his third at the new place. He was not as pleased with the second visit as he had been with the first, so we'll see what tomorrow holds and what decisions David might make about that.
It's hard to put into words exactly what I'm trying to say, because a lot of the above probably sounds like normal work and life stress, but there's something different about having our first "beginning of a semester" since David's stroke and figuring out what our pattern and routine are going to be. We're no longer in the crisis state we were in at the end of last semester, but we don't quite know yet what we can handle where we are now. I know this is just one of those bumps and that as we journey on we'll get past it and we'll find our balance point with all this. It's just pretty overwhelming right now. If you are someone who is praying for us, would you please pray for wisdom as we seek to make these decisions about time and priorities and balance, and would you pray for God's peace to be with us as we go through the process of getting to that point?
Sunday, January 06, 2008
She and I had actually been talking about doing this for years, and it finally came about, so it's even more of an event than the pictures alone indicate.
Saturday, January 05, 2008
Thursday, January 03, 2008
Tuesday, January 01, 2008
" . . . I wished to live deliberately , to front only the essential facts of life, and see if I could not learn what it had to teach, and not, when I came to die, discover that I had not lived. I did not wish to live what was not life, living is so dear; nor did I wish to practice resignation, unless it was quite necessary."
Henry David Thoreau (1817-1862)