March 26, 2011 - 11 AM

Hopefully, most of you faithful readers of Sarah's blog have moved on by now with the sense that Sarah herself is moving on - and she is.  And, perhaps I should, too.  But, I have to admit, it is a little hard to just put this behind me with so much still in the way of day to day reminders - getting the Coumadin right, the pesky leg wound that won't heal, and the audible click-click of that plastic heart valve that I can hear every time Sarah stands close or gives me a hug.  For those who are still dropping by once in awhile and for those who have in the past, thank you again for your collective good will and concern on Sarah's behalf - it has been a crucial part of her healing (and ours).

And now the news...

Thursday (March 24) Sarah had follow-up visits with her infectious disease people (uneventful) and her cardiologist including an echocardiogram and an EKG.  Sarah continues to have a somewhat rapid heart rate (around 110/min when she is resting), and the reason for this is not clear.  People with Down syndrome are more prone to thyroid problems, so we are going to check on that.  And her echocardiogram continues to show a little bit of inefficiency in a small area of her heart muscle called the apex which is around the bottom tip of her heart (picture the pointy part at the bottom of a valentine).  This may mean, we are told, that that area of muscle was injured by her heart infection, injured by the surgery, or is just still recovering from the surgery.  Something called the ejection fraction is about 50% which may not be bad for someone my age, but is lower than normal for someone Sarah's age - and reflects some inefficiency in how her heart is working.  (What was I saying about it being hard to put this behind me?)  Anyway, Sarah will need to start a new medication (metoprolol - a beta blocker) to see if it will help her heart to heal a little more completely.

Do you remember that little device for home testing of Sarah's blood clotting that we had such a difficult time obtaining?  Well, we have it, but have not yet been able to obtain a result.  Trooper that she is, Sarah has put up with several finger sticks, but we have gotten nothing but "E 5" (error code 5).  Unfortunately, there is no way to troubleshoot this without having a drop of blood.  I have tried to convince Lilly, our wheaten terrier, to volunteer, but she disappears as soon as she sees the device.  So, maybe I will need to be the guinea pig. Sarah's Coumadin dose was falling week to week, but now we have overshot the mark and have had to tweak it back up a bit.  With so many things (diet, other medications, illnesses) that can influence the Coumadin's effect, chasing the dose seems to be more the rule than the exception.

Sarah, like I said, is moving on!  After returning home from her appointments on Thursday, I put her on the 3 PM bus to South Station in Boston where she bought flowers for Levi and for Levi's mother and then caught the 5 PM train to Westborough.  She's spending a long weekend with Levi, and a few medications, a daily dressing change, and a clicking heart valve certainly were not going to get in her way!  You go girl!

March 13, 2011 - 3:30 PM

Two months exactly since the day of Sarah's heart surgery.  We launched this blog to pass the anxious hours - 8 of them - while she was in the operating room.  So much has happened during the following three weeks in the hospital and the succeeding five weeks at home.  There were days in which two blog posts could not cover all that was happening...and now it has been a week since I have had any news to report.

On Tuesday and Thursday last week Sarah returned to her job at the Disability Rights Center of New Hampshire where she is the office assistant.  Only for two hours each day, but she seemed to tolerate that very well.  The big news for her at the DRC is a new (much needed) copying machine that she will need to master.  She was so happy to see her friends at work and to return to her usual Main Street haunts.  The plan will be for a gradual return to action culminating in some walking to work once the spring weather is well-established.

This coming weekend Sarah hopes to make the trip to Westborough, MA, to see Levi.  This involves the Concord Coach to South Station in Boston and then the train out to Westborough.  She is looking forward to Levi's new apartment and plans to work on her writing during the times that Levi has to work.  She'll need to manage her medications including her Coumadin each day, but so far, she has taken that easily in stride.

Today we finally received the CoaguChek XS home monitoring device to allow Sarah to measure her INR test of blood clotting at home.  This is the test that is used to be sure she's on the correct Coumadin dose.  As you might recall, obtaining the device has involved a lengthily excursion through the corporate underbelly of our health care system with multiple hand-offs, communication failures, and steps involved.  But, today a very pleasant and helpful nurse trainer arrived at our house and spent 90 minutes showing Sarah and us how to operate the device in order to measure Sarah's clotting.  Sarah did the entire procedure herself including the finger stick to obtain a drop of blood -- twice.  We learned that her INR was a little above our targeted maximum so we will report this to her cardiologist and probably lower her Coumadin dose a bit tonight.

We have received many billing summaries from Sarah's insurance company (Cigna) for multiple services that Sarah received during her hospitalization and afterwards.  Some were small, and some fairly large.  But, the mother of them all arrived last week for the hospitalization itself - the days in the ICU, the days on the regular floor, medications, devices (e.g. 1 pacemaker - $9700.00), use of the operating rooms - all adding up to a hefty sum (think complete 4-year college education).  Just to add to our on-going fun with the health care system, this particular form said "You will pay:  $Hefty Sum" and "Cigna will pay:  $0.00."  When I regained consciousness, I remembered (see last week's blog) that Sarah had been "terminated" by Cigna on February 25th due to some missing paperwork.  I have been assured that this will be straightened out, but it still makes me a little nervous.  I can certainly see how health care debts have become the most common reason for American's to file for bankruptcy! 

March 6, 2011 - 11:30 AM

Proud of her Irish heritage, have a look at Sarah posing with two Irish dancers during last night's Green Celebration at Concord's Capitol Center for the Arts.  Sarah joined Seddon, me, and our friends at this pre-St. Patrick's day fest that included food, that yummy dark brown beer with the foamy top, and fabulous Irish music.  But, doesn't she look good?

Sarah seems like the old Sarah again - just with a few new parts.  She is planning to return to work for a few hours this Tuesday and plan a schedule for gradual re-entry.  Sarah manages all of her own medications with the help of a one-week medication manager pill box.  She is back to staying on top of her stuff - doing laundry, organizing her room, managing the photos on her laptop, and tending to her Facebook page.

You'll be pleased to know that Sarah's insurance has been reinstated.  Needless to say, I was!  Here's what happened...   Because of Sarah's disability, she is eligible to stay on my insurance plan at work beyond the limit of age 26 that applies to her siblings.  However, this requires paperwork each year to prove that she indeed has a disability (that her Down syndrome has not mysteriously disappeared over the past 12 months).  There is a form that I fill out and another form that her primary care physician must complete.  Apparently when I did this last fall, the physician's form was never received by the insurance company.  For reasons that are not clear, this was suddenly discovered on February 25 (9 days ago).  As a result, she was immediately "termed."  Termed, of course, is short for terminated - a truly un-patient-centered use of language I would say.  One has to wonder if Sarah's recent "high utilization of the health care system" had anything to do with a review of her eligibility for insurance and her resulting termination.  And, why does one have to learn they have been "termed" by having a new health care service denied?  You would think Cigna would warn one that termination was imminent ("The End is Near") or at least send a letter after the fact to alert one of this new status.   In any event, after a flurry of emails, Sarah's insurance was reinstated provided that the proper paperwork is completed promptly.  And, finally, this may mean that Sarah's PT/INR (blood clotting) testing device can be shipped, and we can start saving the company (my company, in fact) money by testing at home instead of using the laboratory.

On a more positive note, Levi is coming today to take Sarah to the ARC dance at the Red Blazer.  It looks like he will be able to spend the night as well, so Sarah is ecstatic with anticipation.  More of the old Sarah!

March 3, 2011 - 9:30 PM

Sarah and I drove to the medical center at Dartmouth this afternoon, and the vascular surgery nurse practitioner examined the wound in Sarah's right upper thigh where the infected clot was removed on January 12, the day before her heart surgery.  There is still a half inch in diameter and half inch deep open area in the middle of the wound.  It "tunnels" about a quarter of an inch to the north but doesn't connect with a second, smaller open area in the wound.  The nurse practitioner did a good job of probing the wound (happily, Sarah took a bit of her pain medication during the drive up to the medical center) and a great job of talking to Sarah, the patient rather than to her Dad.  She concluded that the wound was healing, just slowly, and prescribed an ointment that contained iodine and a compound that cleans out debris from a wound (this is called debridement in medicalese).  Because of the ointment's distinctive color, the nurse practitioner said that she calls this "poop in a tube," but we are visualizing something slightly more antiseptic.  So another shoe failed to drop - maybe we really are on the road to something like normal.

Oh, by the way, do you remember that device for the home measurement of blood clotting that we were trying to obtain?  The one that is covered by our insurance, but requires that dragons are slain before you can have it.  The one for which five separate corporate entities needed to lay their hands on the process (and the flow of dollars) in order for it to be delivered to us.  Well, we still don't have it, though we have again been told that "it is being shipped tonight, tomorrow at the latest."  The latest (and maybe last) glitch is almost comical at this point.  The company to which the order for the device was passed after our insurer (Cigna) had approved it now says that Sarah's insurance coverage expired on August 31, 2010.  This is an interesting thing to discover a month after a three week hospitalization that has to involve a bill in six figures, for which Sarah's insurance has already provided most of the payment.  Now we think she is uninsured?  And I am asked to prove that she is insured before the device will be shipped to us.  The only proof I have is her insurance card with her member ID number.  I thought that should be pretty good.  Stay tuned...

March 2, 2011 - 8:15 PM

We were too busy celebrating last night to share the news.  Yesterday, Sarah had the PICC line removed and shed herself of the load that she has had to carry around for the past five weeks.  She seems transformed by this - immediately making calls to her work supervisor and her friends at the Concord YMCA to say that "I'm coming back!" In fact she and her mom went to the Y today for a light workout.

Yesterday, Sarah was home by herself because both Seddon and I had to work and we could not find someone to stay with her.  Well, looks like we didn't really need anyone to do that.  Late morning, Sarah had a call from the nurse practitioner in the Infectious Disease department at Dartmouth Hitchcock to tell her that all of Monday's lab work and other tests were fine.  The nurse said that she would call the visiting nurse to tell her to come out and remove the PICC line.  The visiting nurse then called and Sarah scheduled a time for the home visit.  The nurse came, removed the PICC line, took away all of the equipment, drew some blood for a coagulation test, and put a dressing on the line site - all of which Sarah handled on her on.  She did send me a brief text message describing all of the days events  - and indicating her intention to have a celebratory dinner out (Olive Garden is usually her top pick) and would I like to come.  And so that is what the four of us did! 

One remaining issue is that the wound from the surgery on her right femoral artery (right upper thigh) is healing very slowly.  There are three open areas, and the infectious disease nurse at Monday's visit thought the open wounds might be connecting - "tunneling" - with one another.  So at 6:30 this morning the phone rang.  It was the cheerful scheduling person from the vascular surgery clinic saying Sarah's vascular surgeon would like to have a look at this wound.  I said that this was not a convenient time for him to drop by because Sarah was still sleeping.  She said that she was actually hoping that we would come to his office at the medical center.  So, we have a new trip to the medical center (75 minutes each way) planned for tomorrow afternoon.  Don't get me wrong, I am glad to have this checked and attended to if necessary.  But, it's just a little anti-climatic after the celebration of the PICC line removal of the night before.  (Is there always another shoe that drops?  Probably not.  I hope.)

March 1, 2011 - 11:30 AM

Yesterday, Sarah endured a marathon day at the Dartmouth Hitchcock Medical Center.  Because of last week's lingering concerns on the part of the infectious disease consultant (sed rate descending too slowly, elevated alkaline phosphatase) that some little nest of bacteria might be lurking somewhere - in her abdomen, in bone, in the location of the infected clot in her right leg, or, God forbid, in her heart - Sarah was scheduled for a battery of additional tests yesterday on top of the planned follow-up with her heart surgeon.  She also has been required to continue her IV antibiotics, PICC line, and the dreadful black bag containing the IV pump and fluids.

To cut to the chase - all of the imaging tests were reassuring.  These included a bone scan, liver ultrasound, abdominal ultrasound, right groin/femoral artery ultrasound, and an echocardiogram.  Blood tests drawn yesterday including blood cultures and other tests of how her body might be fighting an infection are still pending at this time, but we should hear about them later today.  No PICC line removal yet, but we have our finger's crossed.

Sarah looks well, says she feels well most of the time, and seems by all day-to-day measures to be thriving - good appetite, sleeping well, pain free, no fevers or chills.  I'd like it if she tried a little harder to exercise, but I think she'll be more willing when the PICC line and associated baggage are gone.

Her husband, Levi, is coming back again this coming weekend.  They are in fairly constant communication by text and cell phone when Levi isn't working, but long to be together in person.  There is an ARC dance on Sunday that they aim to attend - it was at one of these dances 5 1/2 years ago that they first met.  Let's hope for some more "and lived happily ever after" sometime soon!

February 23, 2011 - 9 PM CST - 10 PM EST

Poor Sarah was left holding the bag today...the IV and IV pump bag, that is! She had been counting the hours until she would be rid of her PICC line and the black albatross that she literally wears around her neck (or sometimes her waist). However, her follow-up visit with the Infectious Disease team at DHMC put a stop to any plans for stopping IV antibiotics today. Sarah's liver function tests have increased somewhat - not much, mind you, but who is taking any chances at this point. Liver function tests are mostly the measurement of enzymes in the blood that should be inside of liver cells. When those cells are suffering in some way, the enzymes that they make and use leak into the bloodstream providing the finger prints for possible liver trouble. For Sarah, that could mean a secret little band of bacteria hiding in her liver and waiting to pounce on her when the antibiotics are stopped. In addition, some other blood tests that provide a kind of barometer of a person's inflammatory responses to things like infections are remaining a little too elevated (or going down a little too slowly) for the comfort of the infection disease specialist. So, the tests show that it remains possible though not very likely that there is still some pocket of infection that has not been reached by the antibiotics. Not very likely....but we have been living in the land of the not very likely for the past two months. We know how dangerous that can be.

So the new plan...Monday will be a busy, long day at the medical center. It already included a follow-up visit with Sarah's heart surgeon including a chest-X-ray. Then, a follow-up echocardiogram was added. Now, the infection disease folks would like to see a liver ultrasound, an ultrasound of Sarah's abdomen, groin areas, and femoral blood vessels and also a bone scan. Finally, a stop at the lab for a quick pint - of blood that is - for another panel of blood tests. Meanwhile the antibiotics continue, the every 48 hour IV bag changes and daily heparin flushes of her PICC line continue, and the black satchel remains Sarah's constant, hated companion.

If the truth be told, Sarah melted down with the news of her continued burden. But, then she quickly pulled herself together, stiffened her upper lip, and carried on. She is a truly amazing, resilient person - if there is such a thing as existential forgiveness, Sarah is the one who has it.

Me, I'm "enjoying" 80 degree temperatures in Harlingen, Texas, while surveying an amazing primary care medical home serving a most vulnerable population of children and families along the Mexican border. But, I wish I was home - even if there are temperatures in the teens and a winter storm watch for tomorrow and Friday (please don't hold up my return).

By the way, did you know that Sarah now has blog readers in ten countries, and Belize is second after the US? The list: US, Belize, UK, Canada, Germany, Czech Republic, Pakistan, Singapore, Brazil, and Denmark.

February 19, 2011 - 5 PM

Happy birthday, dear Levi.  Sarah's husband is 31 years old today, and he is here spending the weekend with Sarah and with us.  They were last able to be together while Sarah was still in the hospital and barely able to hold his hand.  Now they have plans for dinner out for Levi's favorite meal - Japanese food! (One of Levi's grandmothers is Japanese)

 As you may recall, Sarah will have a personal, point-of-care device to measure her PT/INR from a drop of blood much like someone with diabetes monitors his or her blood sugar.  This is the test of the coagulation status or thinning of her blood that is crucial to the adjustment of her Coumadin dose.  This device (a piece of "durable medical equipment") is covered by our private insurance plan.  I obtained a letter of necessity (actually, I wrote the letter) signed by her cardiologist and submitted it about three weeks ago.  A few days later I confirmed that the device had been authorized and should arrive in a few days.  As of yesterday, no word about the device.

So here is the pathway through which this process must unfold...    Sarah's private insurance company (CIGNA) contracts with another company (Care Centrics) which reviews the letter of medical necessity and decides whether a purchase should be authorized.  If authorized, Care Centrics then contacts another company (Alere Home Care Systems) which actually procures the device from another company (the vendor).  Alere Home Care also contracts with yet another company (are you keeping count?) that will provide the in-home training in the use of the device.  Needless to say, once this process is launched, it can be a challenge for the patient to track down the bottleneck if the delivery of the product or service has been delayed.  I count five companies (not counting the company that manufacturers the device that Sarah will use) involved in this seemingly simple process.  That would seem to mean five CEO's, five sets of owners or shareholders, five profit margins to be assured, five sets of vice presidents, five marketing departments, five human resources departments, five corporate headquarters (none of which is within 500 miles of our home), and a partridge in a pear tree.  And some think that our extraordinary national health care costs can be addressed in a multi-payer model.

Only five more days of IV antibiotics!  One more dressing change, three more IV bag changes, hopefully the loss of the heavy satchel that Sarah hates to carry around.  We will worry for a time about her having no antibiotics in her blood stream, about the loss of that probably false sense of safety.  But the new reality, the new normal looms ever closer.

February 16, 2011 - 10 PM

So a nice person in the ladies room at Margarita's Restaurant helped Sarah with the bloody nose - her first on Coumadin. "Just squeeze here and count to 30," she said. But think about where this is happening - one of Sarah's favorite restaurants, out for some Mexican food with her mom and sister. Wow!

Sarah has a new plastic box with little covered compartments for each day's pills, and she wants to manage that herself. And she is on strike about dressing changes - "They hurt, it's my body, no more." So we'll have to negotiate a little on that, but hopefully she is on her last couple of those if we stop the IV antibiotics next Thursday and there are (please) no fevers.

Sunday I traveled to Washington for a two-night trip - the first travel since Sarah's illness began. This trip included Tuesday when Seddon would also have to be out of the house for her clinic at the Manchester VA. Someone else would have to be with Sarah all day that day. Fortunately, one of Sarah's oldest friends from first grade was available, someone who along with her twin sister acted as Sarah's six-year-old personal guardians on the school bus. She happens to work as a direct care provider locally which made it possible to pay her for her time from Sarah's community supports budget. It all worked out very well.

Monday's INR was 4.0, which is above the 2.5 to 3.5 range and means that her blood was over coagulated. Why? Nothing obvious - no illnesses, no new medications, no changes in diet. Maybe it is just one of the mysteries of Coumadin therapy. We are advised to start a lower Coumadin dose every other day alternating with her current dose - and re-check next Monday. Hope this doesn't become a weekly surprise to look forward to!

But, as you can see this is generally good news overall. Minimal pain medication has been needed for 4 or 5 days, cardiac rehab session tomorrow, and, best of all, Levi will be visiting this weekend and celebrating his birthday with Sarah and with us. Sarah would like to be rid of her IV bag with the pump and tubing for "just one night," but that will have to wait until the next time.

February 12, 2011 - 10:30 AM

Five weeks have passed since Sarah's hospitalization and 2 1/2 weeks since she came home.  Somehow that doesn't seem to be enough time to contain all of the events, emotions, loss of sleep, strange meals, transitions, fear, pain, relief...but time is curved and relative, we are told, so probably expands and contracts to contain what it must.

Sarah's Thursday visit with her primary care physician was a helpful, normalizing occasion that began the process of having a terrible current medical episode become a more benign-feeling part of Sarah's medical history, just some binary code in her electronic medical record.  Unfortunately, the clicking of her new valve and the ticking of her pacemaker make it all very real again whenever one pays attention.  Sarah's doctor told her to expect that for each day spent in the hospital about one week of recovery would be needed.  That was sobering but very helpful information.  As we wonder about her need to sleep and her limited activity tolerance (is there a new health problem? is the infection really under control?), it helps to recognize that her recovery will be a matter of months not weeks.  After all, I read today that it has taken Red Sox second baseman, Dustin Pedroia, nearly six months to recover from a small broken bone in his foot!  (Suck it up, Dustin, comes to mind, but what do I know?)  It was comforting to find that her primary care medical home team really is equipped to help coordinate some of her care as well.  In a few weeks, we'll shift her long-term Coumadin therapy management to the local Coumadin clinic.

Yesterday, Seddon and Sarah met with Sarah's case manager from Community Bridges (the area agency serving Merrimack County for individuals with disabilities).  They re-assessed Sarah's goals and her annual budget in order to try to utilize some of these resources to meet Sarah's current needs while keeping her longer term objectives in sight.  That may result in some additional coverage at home - particularly in view of my up-coming work-related travel demands - three 2 - 3 day trips in the next four weeks.

Sarah, herself, continues to be in good spirits with less and less pain and more vitality.  Her color gradually improves as her bone marrow churns out brand new red blood cells.  Last night she ordered her traditional Friday night small plain cheese pizza from Constantly Pizza for the first time.  And past midnight, she was sitting in bed with a movie running on her DVD player and her computer humming to the tune of her latest essay.

I start to wonder about the life span of this blog.  I wouldn't want it to last longer than Dustin Pedroia's.  For now, I'll continue to post from time to time out of habit, I suppose, but most of you probably have better things to do.

February 9, 2011 - 10 PM

Yesterday, Sarah had follow-up visits with her vascular surgeon who operated on her right leg and with her infectious disease specialist who continues to manage the treatment of her bacterial endocarditis.  The vascular surgery visit included an ultrasound imaging of her femoral artery around the location of her surgery and blood pressure readings in her left arm and both legs.  The good news was that the circulation to her right leg seems to be nearly completely restored to normal.  In the very old days, this would have been determined by the fact that both of her feet were warm and pink, but the new technology allows us to recognize "warm and pink"with far greater precision.  No further follow-up will be needed from the vascular surgery standpoint.  The pain around Sarah's knee does seem to have been due to temporary injury to her femoral nerve as a necessary consequence of her leg surgery.  It seems well-controlled by the amitryptilene, and her surgeon was confident that it would disappear in a relatively short time.

The infectious disease specialist was pleased to see how well Sarah appears at this time.  Her blood cultures remain negative (no more bacteria in her bloodstream), and her blood counts don't show any signs of infection.  There are no signs of harm to her liver or kidneys at this time.  The one loose end is a slight rise in one enzyme (protein) in her blood called alkaline phosphatase compared to a week ago.  The "alk phos" can be an indication of a problem with liver function, but other liver enzyme tests were normal.  It can be an indication of a bone problem, but there are no symptoms to suggest that.  The plan is to re-check this test in a week.  If it does not continue to increase, then it is unlikely to indicate a problem.  However, if the level of this enzyme continues to rise, then "further investigation" will be needed.  (One day at a time....right?)

So, tomorrow Sarah will be seeing her primary care physician, that is, visiting her primary care medical home.  In the work in which I have been involved related to trying to increase the value of primary care in our health care system, the primary care medical home becomes the headquarters or "home base" for an individual's health care.  This usually involves a team approach in which both physicians and "mid-level professionals" (nurse practitioners or physician's assistants) are involved.  Increasingly, the physician's role should be to lead the team, assure the quality of the care provided to all patients, and directly manage the care of the most complex patients.  Sarah is unfortunately now firmly and maybe permanently in the class of the most complex patients, and we are expecting that her primary care physician will make herself as accessible as possible in the on-going monitoring of her health and well-being.  Her primary care practice has been recognized by the National Committee on Quality Assurance (NCQA) as a Level 3 (highest level) medical home.  We are about to test that recognition.

Sarah seems to be doing well in general.  She tends to sleep through the night without painful interruptions of her (and our) sleep.  She is needing less strong and less frequent pain medication.  Her appetite has improved.  Her main complaint lately has been lugging around the 2 to 3 pound "purse" containing her IV pump and bag of IV fluid.  I think she is also getting a little bored.  But whose complaining...

I have to return to some of the travel obligations associated with my work in the coming weeks with a three day trip to Washington starting on Sunday and a four day trip to southern-most Texas the following week.  This is all assuming that things continue to go well.  In any case, this will complicate life at home for Seddon as she also tries to return to some of her work.  One day at a time...

February 6, 2011 - 12 noon

Yesterday's mail included the letter from Sarah's cardiologist to her primary care physician reporting on her October 26, 2010 follow-up visit to the cardiology clinic.  It was a little daunting to read how well she was doing and how stable she was from a cardiac point-of-view as well as the recommendation that "SBE prophylaxis is not indicated as per AHA 2007 guidelines."  That was then, this is now.  Also, one hopes that communication to the primary care physician about her current problems occurs in a more timely manner since the stakes for everyone being on the same page are now much higher.  Of course, if everyone used in-operable electronic health records (electronic records that can talk to each other), then the information in Sarah's primary care record would be updated during or immediately after her most recent visit to her cardiologist, or her most recent lab test, etc.

Sarah's continued knee/leg and chest/incision pains prompted the nurse practitioner on the cardiothoracic surgery team to add a new medication.  Amitriptylene is an old antidepressant medication that has proven helpful for certain kinds of "neuropathic pain" (pain due to nerve injury).  Since nerve injury may be playing a role in both pain locations for Sarah, this seemed like a good idea.  So far, it seems to be very helpful with her knee/leg pain which has nearly disappeared.  It is less clear that it is helping with the chest wall/incisional pain.  Pain remains the primary limiting factor in Sarah's recovery process - though it is intertwined with anxiety, fear, and post-trauma stress in complicated ways I am sure.

I am not sure how helpful her "cardiac rehab" consultation at the local hospital was on Friday.  Sarah is not exactly the typical cardiac rehab client in many ways.  The assessment amounted to seeing how fast she could walk around the perimeter of the room six times.  There was no checking of pulse or blood pressure.  Return visits were scheduled, but Sarah is doubtful that this is what she'd like to do.  We may need to look for a physical therapist, exercise physiologist, or personal trainer with a combination of experiences in their background.

We are working on a consultation with a local physiatrist (physician specializing in physical medicine and rehabilitation) here in Concord who is also a chronic pain management colleague of Seddon's.  His advice may be helpful on a number of fronts such as those I just described.

Does anyone find that their body waits for the right moment to succumb to acute illnesses - usually colds or the flu?  This has always been true for me and probably accounts for the fact that I had plenty of accrued sick time to devote to Sarah's needs over the past 6 weeks.  I practically never use sick time, but I can depend upon a 24 hour illness at the beginning of a planned vacations or during some long holiday weekends.  So after starting to feel it coming on Friday morning, I was sick in bed, mostly sleeping, for all of Saturday.  Blown kisses had to suffice for Sarah for 24 hours.  I'm not sure what I would have done with an illness like this three weeks ago.  Thursday afternoon I called into a meeting in Washington that I was unable to attend.  Someone familiar with Sarah's story said, presciently, "How are mom and dad doing?  You need to be sure to take care of your own health at times like these."

February 3, 2011 - 9 PM

Sarah had follow-up visits today including an echocardiogram and visit with her cardiologist.  The echocardiogram showed no signs of new or continued infection (vegetation) and the atrial patch seems to be secure.  There were also no indications of pericardial effusion (fluid collecting around the outside of the heart) or pericardiotomy syndrome (a reaction to have the pericardial sac around the heart disrupted by surgery).  All good.

Her physical exam with her cardiologist revealed nothing new or worrisome.  Blood pressures in both of her legs were the same - indicating good blood flow in her right leg where surgery removed a large infected clot.

Lab results from Monday included negative blood cultures - no new signs of infection in her blood.  Her white blood count was normal indicating that her body is not trying to fight an infection at the moment.  She remains anemic, but has improved a little since her hospital discharge.  Some tests that provide a kind of barometer of inflammation in her body (Sedimentation Rate and CRP) are still quite elevated, but these tests may take awhile to improve - actually the CRP has improved since the beginning of this.

The INR test of her blood clotting from yesterday was 3.0.  We are aiming from 2.5 to 3.5 for this test using the Coumadin medication.  So 3.0 is exactly where it should be.  Her cardiologist recommended continuing with 7 mg of Coumadin nightly pending the next check.  Many, many things affect the impact of Coumadin on thinning the blood - illnesses like colds and the flu, other medications, diet (foods rich in vitamin K will counteract the effect of Coumadin - e.g. dark green vegetables, salad greens, etc. Brussel sprouts are on this list, but there is no great risk that Sarah will suddenly have cravings for this vegetable!)

By the way, and no surprise to those who know Sarah, she looked smashing today in black pants and a sea blue sweater.  But, it was the added flourish of the blue Pashmina scarf - a recent gift from Amy Flores, Lucy's mom - thrown around her neck and covering the upper half of her surgical scar that seemed to draw all of the compliments from the staff at DHMC.  Thank you, Amy!

A cancellation at the cardiac rehab program at Concord Hospital provided an opening for Sarah tomorrow at 9:30.  It will be great to have a reason to get out of the house and a program of safe strength-building under way.

February 2, 2011 - 6 PM

Monster storm - Shovel the walk - Groundhog Day - Upheaval in the Middle East - New wheel bearings for Eliza's car - Replace Sarah's laptop (a writer needs her tools) - Shovel the walk again...

Mostly, it feels good to have the mundane begin to overtake the urgent and frightening.  But, finding the pathway for two too busy, kind of old parents to return to work responsibilities - most of which involve commitments to other people of one kind or another - is not a straightforward process.  Seddon needs to return to her one day per week clinic at the VA - complex pain management patients who need attention plus a per diem contract that doesn't pay anything if Seddon doesn't show up.  But, it's on Tuesdays and I have two upcoming Tuesdays with travel commitments for which not going means someone else has to pick up the slack.  And every week day has something similar to negotiate - we are still in the purgatory of the not-so-urgent and the not-yet-mundane..

Sorry, I know, this blog is about Sarah's healing not about her parents' little logistical problems.  And Sarah continues to do generally well.  Pain remains an issue like clockwork - medication blood levels fall and pain increases - chest wound (fractured sternum), right leg (femoral nerve injury), headaches at times (that's new, what's that about?), and since the dressing change on Monday, a new pain at her PICC line site (?infection, mechanical vasculitis, uncomfortable positioning of the catheter after the dressing change).   This latter new pain necessitated a call to the home health vendor and an unplanned visit (in the snow storm) by nurse Diane.  She pleasantly and carefully assessed the situation, removed the dressing, repositioned the catheter, applied the new dressing - with complete removal of Sarah's discomfort.  She also drew blood for Sarah's INR test of her blood clotting so it won't have to be done tomorrow.  (I wish setting up her laptop was as easy, but nurse Diane was not volunteering to help with that.)

Tomorrow is the first of a series of multiple follow-up office visits for Sarah.  First, at 7:45 Stuart will call from DHMC to talk again to Sarah's pacemaker and make sure it is feeling OK.  Then Sarah and I will head for DHMC (giving Seddon a work day to herself) for an echocardiogram and a visit with her pediatric cardiologist (who continues to be her "adult with congenital heart disease" cardiologist).  The echocardiogram will be the first look into her heart since her surgery and will tell us (we hope) that there are no new "vegetations" that would suggest continued infection in her heart.  Her cardiologist will examine Sarah, tell us about the echocardiogram, and continue our Coumadin (blood thinner) treatment plan.

Next week Sarah has Tuesday visits with the vascular surgeons to check on the circulation to her right leg after the surgery to remove the embolus there and with the infectious disease specialists who will have the results of the laboratory work done this past Monday (another chance to be sure her infection is under control).  Next Thursday she has a visit with her primary care medical home here in Concord to begin some of the transition of her care from an entirely specialty domain to one coordinated by her primary care physician and her team (and probably us).  The week after that there are follow-up visits with her heart surgeon and his team and probably another follow-up with her cardiologist. We are not complaining, mind you, grateful in fact - but it does make the coordination of any other part of life a challenge.

I was supposed to present at Pediatric Grand Rounds at DHMC next Wednesday, but have decided to postpone that talk until June.  The subject, ha ha, was Supporting Health Care Transitions for Young Adults with Complex Health Conditions of Childhood Onset - or something like that.  I had hoped we might be further out of the woods by now, but at least for another week or so, the combination of preparing a one hour lecture and turning up at 8 AM in Lebanon seemed a little too uncertain for the necessary commitment.

January 30, 2011 - 11:30 AM

It would almost seem normal - almost...

Having a houseful of all of our children and their significant others (minus, Levi, to Sarah's chagrin, but he will be here before long).  Reed and Lucy cooked a delicious vegetarian dinner last night of sauteed red peppers stuffed with feta cheese and assorted other flavors, a spinach tapa with pine nuts and raisins, and Spanish rice.  Eliza baked cookies, and Stuart arrived on the bus from Boston in time for dinner.  Sarah presided at the head of the table and joined us all afterwards for a game of Balderdash.  Anyone heard of a "zarf"?

A Sunday morning like any other with a series of breakfasts related to individual sleep cycles.  Sarah woke only once during the night and slept until 10.  Homework for the college students, crossword puzzles for the Brooklynites, Facebook and TV for Sarah, and, well, you know what I'm doing at the moment.

We had a moment of difficulty as Seddon and I attempted to flush the unused second lumen of Sarah's IV line from which her blood tests are drawn, and found that it wouldn't budge.  Clotted off already?  (How many experienced physicians does it take to figure out that there is a clamp on the line?)  We found the little purple clamp, released it, and then the heparin flush went in smoothly and easily.  The every 48 hour IV and antibiotic bag change is again this afternoon.  I have to get the next bag out of the refrigerator so that it comes to room temperature and doesn't freeze poor Sarah.

Sarah's INR (blood clotting test) was 2.0 on Friday, down from the day before.  So she received a higher dose of Coumadin on Friday and slightly higher Saturday and Sunday.  The plan is to retest on Monday and see where we are - still chasing this for now.

I will be testing my return to work tomorrow, hoping that I can bring some focus to work and away from Sarah's care for a few hours.  Seddon will return to her clinic at the VA hospital on Tuesday.  We aren't ready to leave Sarah unattended by one of us - not this week.

January 28, 2011 - 5 PM

Oh well, force of habit...

Long afternoon naps might be a good thing for most of us.  Clearly, some cultural traditions have figured this out.  For Sarah, it looks like a necessity.  So she is again sound asleep in mid afternoon.  But, her nights are still somewhat disrupted by the breakthrough of pain, bathroom needs, and even a little anxiety.

Many phone calls were needed today to line up the multiple follow-up visits in store for February and to connect Sarah with the cardiac rehabilitation program at Concord Hospital.  In addition to her insurance on my private plan through Crotched Mountain, Sarah also has Medicaid and Medicare.  However, I discovered today that her QWMB (pronounced Quimby) status has been pending since September.  The state Medicaid office thought that this was highly unusual, but said they couldn't fix it - I had to call the Concord Regional office instead. (Which I did twice, left voice mails, and had no return call.)  Frankly, I have no idea what QWMB stands for or the the significance of this.  However, it seems to create confusion about which public insurance program (Medicare or Medicaid) is responsible for Sarah's medical expenses after her private insurance has paid whatever it will pay.  It also seems to be interfering with coverage for her prescriptions.  I expect that it will take some time to sort this out particularly since every call reaches someone's voice mail (if the line is not busy), and returned calls come days not hours later.  Meanwhile, notices from her private insurer indicate that bills for this long, complicated, and continuing "episode of care" are beginning to roll in.  I will try to develop a running total once more of the bills are assembled.  I long for a sensible, single payer health system, but it looks unlikely in my lifetime without moving to another country.

One positive insurance note is that our private plan will cover the rental/purchase of a "point of care" device for measuring the INR (the test of Sarah's blood clotting needed to adjust her Coumadin dose).  This is a hand held device about three iPhones tall and two iPhones long.  It requires a single drop of blood from a finger stick.  This is much like the devices used by people with diabetes to test their blood sugar.  In the long run it will make us less tied to hospital labs and reduce the need to draw blood from a vein (once the in-dwelling catheter that Sarah has (PICC line) is removed).  Apparently, there are studies that show that when patients measure their own INR tests, they have better overall outcomes with respect to Coumadin therapy.

That reminds me, do you know what Coumadin is?  It is warfarin, and it's the active ingredient in most common rat poisons.  As Sarah took her 6 mg of Coumadin last night, we thought, omg, we're giving our lovely, beloved daughter rat poison.  Sometimes it doesn't pay to reflect on things too much.

Sarah had a great noon time visit to her wonderful colleagues at the Disability Rights Center of NH.  It was her first outing since her hospitalization.  She brought her lunch (ham sandwich with light mayo on cinnamon raisin bread - don't ask!, pretzels, and diet coke) and joined the gang at the communal lunch table for half an hour or so.  She was so happy to see everyone, but was careful to remind everyone of her new work limitations - no lifting of anything over 7 pounds.

Sarah's brother, Reed, and Lucy are arriving late tonight from Brooklyn to spend the weekend.  It will be fun yet again to have all of the family assembled for some meals and conversation.

January 27, 2011 - 5 PM

Sarah's had a quiet, very good day at home.  She wanted to "sleep in," but gamely agreed to let her pacemaker talk to Stuart in the pacemaker lab at DHMC at 8 AM (Stuart said it was a stimulating conversation) followed by allowing the nurse from Critical Care Systems to draw some blood for the INR test to check on her blood thinning process.  Then it was downstairs for breakfast (super charged strawberry banana smoothie with whey protein per Seddon's recipe), relaxing with some morning TV favorites, Facebook.  For lunch, she finally got her favorite lean sandwich from Subway.  We had tried this one day in the hospital, but it was too soon for her to tolerate, but no problem today!

Sarah's friend and colleague, Julia from the Disability Rights Center (where Sarah works) dropped by for a visit and brought Sarah a cool heart-shaped bamboo plant.  They made plans for Sarah to drop by the office tomorrow at lunch time to say hello assuming she feels up to it.

The cardiology office at DHMC called with today's INR result (2.2).  Since we are shooting for this to be between 2.5 and 3.5, it is still a little low.  Her doctor would like to increase the Coumadin from 5 mg per day to 6 mg per day.  We will recheck the INR tomorrow morning.  This process is complicated by the fact that it takes 2 to 5 days for a change in Coumadin dose to be reflected in the INR test results.  So today's result relates to the Coumadin dose she had last Monday or even last Saturday.  I have the image of a dog chasing its tail, but hopefully this process will go quickly and smoothly.

Now what?  We are so appreciative of the support and good karma that Sarah has received from all of you blog readers.  I have no idea how many of you there are, but there have been almost 4000 pageviews in two weeks from 7 countries.  I have no doubt that this support has helped Sarah (and us) survive this ordeal and has fueled Sarah's recovery so far.  However, you must really have "day jobs" or other things to do.  I'm worried that the continued saga here, as important as it will be to us, will begin to sound like the script for some reality TV show (do they have scripts?) if I were to describe what Sarah eats and what she does each.  Or, portray the upcoming drama about which type of Medical Alert jewelry to choose - especially considering that Sarah does not generally like to wear jewelry of any kind (except rings).

I am a little in the habit of doing this, and I'll have to admit that it has been therapeutic for me at times.  Most of the time, I have had to squeeze in a post in a free moment or at the end of the day, so most of them have been hurriedly written.  God knows what would happen if I had more time to think about what I'm writing.  And besides, I also have a "day job (or two)" which I love and miss - by the first of next week I need to be reentering that world as does Seddon.

So, I think posts here will need to become occasional instead of daily.  Having created a journal of sorts of this experience for Sarah and her family, I suspect that I will want to continue for awhile longer on an irregular basis - at least until we feel that a new steady state has set in for our own personal reality show.

January 26, 2011 - 8 PM

Hooray - I am sitting on our living room sofa where Sarah is snoozing with her feet in my lap.  There's a fire in the fireplace, and our very tired Christmas tree is trying to rally for a few more nights of light.  We are home!  Seddon is at Market Basket to re-stock our larder and will fill Sarah's prescriptions.  At Sarah's request, we are planning pizza from her favorite Concord pizzaria.   Sarah has already been up and down the stairs to her bedroom twice.  She insisted on unpacking her bag.  She is by far the most organized member of our family, and those who know me will say that isn't possible, but it is true.  I just stood by for instructions about where to put everything.  But it was more activity than we had on any day in the hospital - maybe more than on all the days combined.  No wonder she is sleeping soundly now.

Maureen from Critical Care Systems came by an hour after we got home.  Sarah was due for a dose of penicillin, and Maureen had Sarah's pump and all of the supplies.  She walked us through the set-up of the pump and the bag of fluid with penicillin in it that will last the next 48 hours.  Sarah now has a cool small fanny pack (she asked for turquoise, but it's black) that holds the pump and the current bag of fluid and medication.  This will automatically deliver a dose of antibiotic every 4 hours.  It will be our job to change the bag every 2 days and monitor the pump for proper operation.  There must be an iPad app for this - I'll have to check.

Critical Care Systems nurses will also handle the dressing changes on her PICC line (once a week) and any blood draws that Sarah's doctors request.  In fact, they'll be back tomorrow to draw blood for the INR, which is the test for how thin her blood has become.  This test has to be kept in a certain range for someone with an artificial mitral valve.  The test will be frequent (almost every day) until Sarah's Coumadin dose is stable.

At 8 AM tomorrow, we will have a call from the pacemaker people.  They don't want to talk to Sarah or us.  They want to talk to her pacemaker - how weird is that?  Oh well, whatever turns them on.  This process will check on the functioning of the pacemaker.  They may also "turn it down" a little since the voltage can be lower as her heart heals.  Seems, sometimes, like we are dealing with plumbers and electricians rather than medical technicians.

Sarah's sister Eliza is off at her drawing class at NHTI.  Eliza has managed not only to be a fantastic support for Sarah (there were freshly baked cookies on top of the oven when we arrived home), but also has made progress in getting her complicated transition back from Central America on track.  She was too late to enroll as a full time student at UNH for the spring, but arranged to enroll in two classes on Tuesday and Thursday.  This will allow time for her drawing class on Monday and Wednesday evening as well as for a part time job if work can be found (Please see Sarah's new essay on Facebook about the jobs crisis in NH - IF you are one of those privileged to be in her Publishers and Writers group...and if you are, could you sneak me a copy of the essay?).

Sarah's brother Reed and his gf Lucy will be back for the coming weekend - so we will have everyone together again.  But this time, it will be at home instead of in the hospital and the Days Inn!

January 26, 2011 - 11:30 AM

Well, finally, Sarah has launch orders from all of her health care teams (cardiothoracic surgery, cardiology, infectious disease, vascular surgery, electrophysiologic cardiolgy [pacemaker]).  Each of these teams will want to see Sarah as an outpatient at various intervals in the coming months; some of them will want to do this "forever."  We are hoping that occasionally these appointments can be arranged to occur on the same day.

Then there are the new teams that will need to become involved in addition to Sarah's primary care medical home - Critical Care Systems, which is the vendor that will provide all of the equipment needed to maintain Sarah's PICC line and assure that she can receive an IV dose of penicillin every 4 hours around the clock for 8 weeks; the Concord Regional Visiting Nurse Association, which will provide for all of the necessary blood draws for lab work and change the dressing on her PICC line (a sterile procedure); the Cardiac Rehabilitation Program at Concord Hospital to work on regaining strength and mobility; the local pharmacy for Sarah medication prescriptions.

What is about to unfold is known in the health systems research literature as a "transition of care."  Sounds simple enough, and it must happen thousands of times a day in this country.  However, our health care system is notorious for handling this poorly.  Poor transitions to home care constitute one of the leading reasons for avoidable readmissions to the hospital.  Good transitions require the ingredient that the Institute of Medicine says is most lacking in US health care - care coordination.  We are about to find out if DHMC and the Concord health care community have figured out the coordination of complex care.  Unfortunately, the ways by which we pay for health care do not yet reward the coordination of care as much as they reward the direct provision of care and the performance of procedures.  We will be open minded and see what happens.  In most cases, the responsibility for care coordination falls on the shoulders of patients and their families.  I hope we are pleasantly surprised to find that things have begun to change.

So... maybe today, maybe tomorrow we'll be headed home to Concord.  Will keep you "posted."

January 25, 2011 - 11 PM

OK, OK - Our son Reed reports from Brooklyn that the blogosphere is worried about Sarah because "no word all day."  Well, the truth is, I had to go to the dentist...and sometimes doing something with a flavor of "normal life" has real appeal.  But, I wouldn't recommend any of this as a way to learn to love visits to the dentist.  Also, once again, no news is good news - so, just chill.

Last night, Sarah slept through the entire night from 11:30 PM until maybe 6:45 AM.  That is definitely the first time for her (and for whomever of us was staying in her room) in the nearly three weeks of this hospitalization.  The night's sleep followed a very good day as I reported last night.

This morning Sarah awoke in good spirits, ate a full breakfast of her favorite cereal (Cheerios) and a banana, and was quickly on-line and sorting out all of the activity on her Facebook page.  We need to own up to some management of her page in her "absence" so that well-wishers could post their support on her wall.  But today was the day of reckoning on this, and I had to take the brunt of it early this morning.  Sarah has several hundred "friends" on Facebook, and they (we) are all organized into groups that she has created.  The groups relate to high school friends, work friends, family, publishing and writing friends, etc.  Everyone has to fit into a group (or else!).  Today, Sarah asked me again and again - "Who is ....?"  If I could say, he's one of your cousins, then she was happy to assign him to the Family group.  However, her basic rule today was that each friend needed to be someone she personally knew or a family member and needed to fit into one of her groups.  Others, I regret to inform some of you, may... - I don't know the Facebook term for "disappeared" but you get my drift.  Please, if this fate befalls you, don't take it personally.  Sarah seems to have certain explicit standards.  (Me, I am happy that anyone at all wants to friend me, and I still only have a handful of friends).  Facebook can be a cruel world.

My trip to Concord and the dentist took up the heart of the day, so I missed most of the activities in Sarah's hospital room.  She practiced climbing a few stairs with her physical therapist.  This proved to be painful to her right leg unlike walking on flat terrain.  The discharge planning nurse visited Seddon and began to map out the resources we would need for Sarah as an outpatient.  Needless to say, this part of our health care system is no more coherent, efficient, or coordinated than any other part.  Sarah will need a cardiac rehab program, a Coumadin clinic to regularly check her blood clotting status, a vendor for home IV antibiotic therapy equipment and supplies, prescriptions for Coumadin, various pain medications, and other drugs, regular follow-up visits with her heart surgeon, her cardiologist, her infectious disease specialist, and her primary care medical home - to name those that come to mind.  We are expected to become quickly ready to coordinate these follow-up needs with our own potential work demands and the needs of other family members.  I'm starting to think I might prefer to go to the dentist everyday.

January 24, 2011 - 10 PM

What are the measures of improvement for Sarah?  Well, her visitors over the last two days have been impressed with how much better she looks (colors, eyes, spirit..).  She's taken several long walks, which she requests herself before anyone can suggest it.  Gastronomically-speaking she's had all of an egg salad wrap for lunch and 3/4 of a cheeseburger for dinner along with a whole Strawberry nutrition shake (Ensure plus a little ice cream).  She's been productive on Facebook, written two short essays, and has read through a multitude of get well wishes on her wall.  (Thank all of you who post, Sarah is now reading them, but she says she doesn't think she can reply to everyone - I am sure you understand.)  Temperatures are normal, blood cultures are negative, her new parts (valve and pacemaker) are working properly.  We have to be close to a return home!

What remains?  Well, one goal was good food intake - hopefully that will continue tomorrow, and become a goal attained.  Her Coumadin pills have to reach a level that achieves the right degree of blood thinning (anticoagulation) without overdoing it.  We have a little way to go with that still.  She is still having some diarrhea, but maybe a little less than yesterday.  Pain remains a confusing and troubling factor.  She has a variety of very real sources of pain related to this illness (chest wall, right knee, throat), she has some pain as a consequence of her treatment (yeast infection in her throat), she has some aches and pains related to an uncomfortable hospital bed (back pain, neck pain), and her head aches at times because whose wouldn't?  We are still puzzled by the burning, stabbing, sometimes pressing chest pain.  It doesn't seem like straightforward heart burn though Maalox helps.  It also doesn't seem like bone or muscle pain related to her incision.  One thought today was esophageal spasm which might explain its episodic quality.  But, probably, armed with a plan and appropriate medications, we could deal with pain management at home if everything else was lining up - in fact it may be be easier to manage in the comfort of our home.

I've noticed that over the past week we have never had the same nurse twice.  Is that just the way nursing coverage happens these days (patients used to have a primary nurse), or have we become the "not it" patient/family?  We try to negotiate the sometimes fine line between being demanding and advocating for Sarah.  When she is in pain, how many minutes of waiting are acceptable after pressing the call button?  When the IV pump alarms are going off, how long should we listen to them before expecting someone to check on the problem in her heparin (IV blood thinner) line?  How do we assure that Sarah has adequate pain control without triggering concerns that we are drug seeking for our daughter (I mean really, Sarah Cooley the drug abuser...)?  Our kids and their friends used to have an amusing routine when some unpleasant task needed doing.  Everyone would quickly put a finger on their nose.  The last one to do so was "it" and would have to carry out the task.  I am picturing a room full of nurses during the shift change with their fingers on their noses when "Who is going to take care of Sarah and her parents?" is asked. ;~)

In the past day or so, Seddon has had the courage to search for more information about Sarah's bug - Staphylococcus lugdunensis.  The information she's found certainly has confirmed the necessity of the drastic measures that Sarah has had to endure.  In some scenarios, the mortality from endocarditis infections with this bug without heart surgery is about 75%.  We will now have to face the eventual day in about two months when she will go off of antibiotics.  There is a small recurrence risk of infection with the same bug and then the mortality rates are just as high.  And what will it be like in the future with every fever or minor illness?  Well, in reality, we are so fortunate that we have these worries ahead of us!

January 24, 2011 - 11 AM

Good morning - There has rarely been time in recent days for a morning post, so maybe this is another indication of improvement in Sarah's status.  That is, we aren't scrambling to respond to multiple physical issues (pain, swallowing problems, rapid digestive transit, etc) so much, and Sarah is back to Facebook and essay writing.

Yesterday, her surgeon, in an effort to think of everything that might help her swallowing by further soothing her tongue, mouth, and throat, added nebulizer treatments with humidified air and along with an asthma medicine called albuterol.  So Sarah was "puffing on her pipe" with the albuterol late last evening.  Unfortunately, albuterol is a stimulant and Sarah proves to be very sensitive to it - so she became quite energetic around midnight and determined to "get a lot done."  So she wrote an essay on the need for more jobs in New Hampshire and posted it to her Facebook page.  It may have been a little rare more like a draft than a finished piece, but she was happy to see many comments on it this morning.  Today maybe we'll try the nebulizer with just humidified air without the albuterol.

We are happy to be on the inside looking out on this bitterly cold day.

January 23, 2011 - 11 PM

One more thing - or two...

Just to leave the day on a positive around 7 PM Seddon and I left Sarah with Eliza to go out for our not-quite-ritual glass of wine and light meal.  This moment together has proven important to us and probably to our sanity through all of this - a time to process the day and compare emotional notes.

Upon our return and a couple of hours after getting Sarah's pain management program back to medications that she could digest, we found Sarah "back at her desk" again - sitting up in bed with her cell phone beside her and her (borrowed) mother's new laptop (She says: "Mine is too slow"), managing her Facebook page, working on an essay again, while taking in the premiere of Mean Girls 2 (excuse me, but..ugh).  Eliza and I left Seddon and Sarah sharing a girls' movie night.

The other thing I meant to add occurred a little earlier in the evening.  Sarah was still very out of sorts and uncomfortable.  We were waiting for her nurse to return with new pain management orders or, better yet, the new medication in hand. Shelby, her wonderful LNA (Licensed Nursing Assistant) for the day, asked if we'd tried Reiki to make Sarah more comfortable.  Seddon mentioned that she had brought it up a week before, but nothing had materialized.  Shelby said that she was a Reiki therapist and offered to treat Sarah briefly.  (Picture skeptical me!)  Five minutes of hands hovering over Sarah's chest wall incision had Sarah's eyes closed, mouth a little open, calmly breathing, almost asleep - she looked at ease for the first time in hours.  The "nerve pain" in her right knee proved more challenging, but Sarah indicated that the therapy had helped that a little also.  This was followed by a nice shower with Shelby's assistance and another Reiki session.  She didn't look much like she needed any medication after all of this, but we knew she'd need something to sustain her over the longer term of the night.  Anyway, I have always been open and non-judgmental (I hope) about all types of safe therapeutic approaches, but personally doubtful about those with a limited scientific basis.  However, what I saw this evening was quite impressive!

January 23, 2011 - 7 PM

Sarah has ranged from edgy and uncomfortable to downright miserable today though no particular complaint seemed to predominate.  Her chest incision hurt, her right thigh and knee were very tender, her head ached, her throat remains sore, her back aches.  The theory now about her knee pain is that it really isn't a knee problem but related to the fact that the vascular surgery in her right groin required traction on her femoral nerve.  This in turn caused a neuralgia-type pain over her anterior thigh and knee.  We are told that this is "usually" temporary and should improve in a few weeks...

She was able to eat an entire cinnamon raisin bagel (toasted) with cream cheese for breakfast, and then, as she became more generally out of sorts, did not want to try any lunch.  We would love to get past this food intake obstacle that is probably the only real barrier to her discharge.

A new problem over the last 36 hours has been (forgive me if this is more detail than you'd like) explosive "rapid digestive transit." (I am forbidden to use the D word.)  There are multiple possible causes for this.  However, one of the consequences (besides fluid loss, crampy abdominal pain, and urgent needs) was the discovery of completely undigested and unabsorbed pills in the "rapid digestive transit" material.  Examination revealed that the pills were the long-acting (taken every 12 hours), strong pain medication that was the basis of Sarah's pain management.  No wonder she has become progressively out of sorts - she is not really getting any benefit from the pain medication that she is on and may be experiencing some mild opiate withdrawal.  So we are trying to get the "Sunday coverage crew" to redesign her pain management plan.

Then there is the apple sauce mystery.  This mystery, which I will explain in a minute, is part of a general dietary services puzzle.  The hospital seems to have a sophisticated system for taking meal orders from patients.  Usually one hears a cheery voice saying "Dietary" at the door, and a helpful red-shirted person arrives pushing a COW. (COWs are everywhere in modern hospitals these days, but not the bovine type - these are Computers On Wheels - with the advent of electronic medical records everyone seems to have a COW.)  Anyway, the red-shirted helper then helpfully enters the detailed meal order for breakfast, lunch, and dinner into the laptop computer riding on the COW.  It all looks very efficient and individualized - you can request almost anything.  However, it turns out to be a cruel ruse it seems since what arrives usually bears no resemblance to what was ordered.  Today, Sarah's oatmeal with brown sugar and her apple juice were transformed into french toast with syrup and coffee - neither of which are on Sarah's list of edible foods.  It has become something of a game we play guessing what will actually arrive.  Computer virus??

Anyway, the apple sauce mystery...In addition to random food at meals, Sarah seems to be on a special list, maybe a sort of Dartmouth Hitchcock Awards program in which the member (Sarah) gets a bonus serving of apple sauce at 3 or 4 random times during the day - delivered with a smile by a red shirted young person with a cheerful "Dietary."

January 22, 2011 - 10:30 PM

Sarah's husband, Levi, arrived around 4 PM.  He took the Dartmouth Coach all the way from South Station in Boston to be with her.  She was a little nervous before he got here as I suppose any woman might be under the circumstances.  Though she looked radiant through much of the day, I imagine that it is really difficult to feel at one's best in a hospital bed.  But, once Levi was at her bedside, it was clear that nothing else mattered too much to either of them.  They had cards and gifts for each other - early, but fitting, valentine's cards.  Levi chose to give Sarah two tickets for a future movie - one for each of them to a movie of Sarah's choice - a simple, but elegant message about life (and pleasure) beyond pain, illness, and hospitals.  Sarah selected a journal titled "Thoughts" in which she hoped that Levi could write down his dreams, and a pen adorned with peace symbols with which to write them - another clear assumption about the future.

Eliza and Stu joined Levi and Sarah for some take out Japanese food in the hospital room, while Seddon and Carl had dinner with Seddon's cousin, Geoffrey and his wife, in Hanover.  There was ever so slight an air of normalcy about these scenarios that seemed to promise (I am not willing to say predict) more to come.

After such a long and mostly positive day, Sarah had trouble tolerating her supper (not the Japanese food, but tomato soup and grilled cheese sandwich - a favorite of hers) and was somewhat restless and uncomfortable when we returned from our dinner out.  Now, everyone has left, and I am alone at Sarah's bedside with her finally asleep for awhile.

Neither Seddon nor I can recall in our entire lives any experience as painful and difficult as this has been.  I know from my work that others have coped with this and more, but it is hard to reflect upon that in the middle of a nightmare.  Our survival and maybe Sarah's has depended upon one or the other of us being strong or alert or sensitive or calming or logical or not too sleep deprived or even able to laugh - sometimes while the other sleeps, cries, rants, or needs comfort.  I have given lectures about the importance of resilience in families in the face of long and short term challenges, and I am familiar with the characteristics of resilient families identified by researchers.  I suppose we are resilient or we would not have been able to cope with this - on the other hand maybe it is simply that we, like most parents, simply do what we have to do for our children - any of them.

One of the resources that we did not have when Sarah was a baby having bowel surgery, heart surgery and bacterial meningitis was her two amazing siblings.  Reed and Eliza have proved themselves to be loyal, loving, resourceful and immensely supportive individuals while juggling very adult complexities in their own lives.  If there are things that can be described as good in this nightmarish experience, one of the most important to me will always be the incredible strength that a family can have facing a challenge together.  We are so fortunate to have that on our side.

January 22, 2011 - 3:30 PM

On rounds early this morning, Sarah's heart surgeon declared a moratorium on tests, procedures, and consultations.  He, wisely I think, observed that sooner or later something unfortunate will result from too many cooks in the kitchen.  At this point, we are certainly ready to agree.  The plan is for a quiet weekend and see where she is on Monday.

As if also by decree from her surgeon, Sarah has had the best 8 hours or so in weeks.  She spent most of it out of bed, ate half of a special order cinnamon raisin bagel (toasted) with lite herb cream cheese, and consumed about 4 oz of her daily caffeine fix (diet coke no ice).  Then in more typical Sarah fashion than I've seen in a long time, she planned her day in precise and careful detail - 9:30 favorite TV show, 10:15 change of top, 11:00 shopping trip (shopping!) to the gift shop to find something for Levi, 12:00 tuna wrap for lunch, 12:30....etc.  Until today's wheel chair ride to the gift shop, she had not been off the unit.  All good.  And Levi's coming at 4 PM to spend 24 hours.

Unfortunately, by 3:15 she had become progressively out of sorts - multiple aches and pains, an electrical sensation in her chest (?pacemaker), tears and misery.  Hopefully, a nap will help.

January 21, 2011 - 6 PM

We need a good news list:
  1. Sarah's infection is under control.  All blood cultures since her surgery are negative.  The fluid from her right knee did not grow any bacteria.  She is tolerating her antibiotics.
  2. Sarah is recovering nicely from her heart surgery in that her wound is healing well, her heart is strong, and her pacemaker is running like "clockwork." (See the end of the last post.)
  3. Sarah's right leg where the large infected clot was removed from an artery now has pulses all they way down to her feet and leg blood pressures that are around 80% of her arm pressures.  This is an improvement from 0% before her leg surgery and 50% the day after, 80% is close to the normal of 100%, and enough to insure good circulation to her leg.
  4. Sarah remains on her life path.
  5. She has the love and support of a strong family and of 100s of wonderful friends who are visualizing her recovery.
  6. She has health insurance.
  7. I am sure there are more - feel free to make suggestions.
Unfortunately, there's a bad news list, too:
  1. She remains unable to eat anything more than sips of apple juice and fresh water.  The reason for this still eludes identification.  Today she was examined by an ENT physician to see if there was anything suspicion in her mouth or throat.  Nada.  She will not be able to go home until she can consume food and gain a little weight.  Some of her physician teams are mentioning intravenous nutrition (a somewhat complicated undertaking) or a gastrostomy tube (another procedure resulting in what would be a morale crumbling situation for Sarah). 
  2. She has a yeast infection in her mouth that has now turned up in a another vulnerable area.  This may be the cause of the swallowing problem, but so far, its treatment has not yielded striking results.
  3. She has pseudogout.  (I wish she had pseudo bacterial endocarditis instead.)  This is the diagnosis earned by having a swollen, painful left knee without another good explanation.  You can do your own Google search if you like, but pseudogout turns up under (who would have guessed it) stressful conditions.  Unfortunately, it is treated with ibuprofen-type medications which she cannot take while taking blood thinning medications.
  4. She has canker sores on her tongue and lips - another miserable consequence of stress.  Why are all of the consequences of stress painful?
  5. She needs to be stabilized on Coumadin to thin her blood before she can go home and will need to take this for the rest of her life.
  6. She is just miserable today which makes it hard to remember a better day yesterday or any day.  However, it is clear that when her pain is well-controlled, she can be in excellent spirits.
  7. Unfortunately, there may be more negatives, but don't bother to suggest any of them.
We were grateful for visits from a number of great friends bearing smiles, good cheer, flowers, and gifts for Sarah or to sustain her family (super snacks and fruits) (thanks so much, Pia, Susan, Sandi, Linda, Arnie, Leah, Will, Ed).  She has a new set of somewhat oriental-looking pajamas that has her looking like a Swedish-Asian princess (thank you, Beth).  Also, a big box from arrived this morning containing a large, soft dolphin pillow pet compliments of incredibly thoughtful and generous California friends (thank you, Dave and Karen).  Sarah took one look at the blue dolphin and handed Eliza back the mystery bear - dog - bunny.  Scroll to the bottom of the blog for a photo of this newest member of the stuffed menagerie.

January 20, 2011 - 11:30 PM

We are back where we started...I mean back in room 437 where Sarah was admitted on January 7 - two weeks ago tomorrow.  It has a much nicer view than the room she was given upon leaving intensive care - there are not too many medical centers where having a room with a view is a consideration.

Eliza and I went with Sarah to the endoscopy suite (sort of an oxymoron) to be with her until the procedure began.  Sarah was wheeled away to the procedure room.  About 15 minutes later, Seddon arrived to tell me that her throat cultures were growing copious quantities of candida albicans - yeast.  She has thrush - not a surprising consequence of high dose antibiotic therapy.  There was a reasonable chance that her swallowing problems were the result of a yeast infection.  After wondering at the fact that the simple matter of a throat culture was occurring two weeks into a hospitalization during which Sarah has been unable to swallow, we decided that the endoscopists needed to have this new information right away.  They left the procedure partially completed to talk with us.  They said that Sarah's esophagus was completely free of inflammation - she did not have esophagitis.  They were ready to dilate the narrow passageway at the site of her bowel surgery when she was a few hours old thinking that maybe her symptoms were due to an obstruction at this site.  They asked us if they should go ahead with the dilatation "since we know Sarah best."  The risks:  bleeding (Sarah would need to go back on her blood thinning treatment within a few hours) and possible bowel perforation (Was Sarah in any shape to tolerate an emergency abdominal operation most likely in the middle of the night?).  We had a possible, simpler cause for swallowing problems (severe yeast infection in her throat), and her symptoms were not completely consistent with a small bowel obstruction (no real vomiting, just retching soon after putting food in her mouth).  The argument in favor of dilating her narrowed bowel:  we are already there, we might as well try it.  For us, that sounded like the prelude to a new nightmare.  What was it that Hippocrates said and that every medical school student repeats at graduation?  Do no harm, I think it was.

So, we pulled the plug on the dilatation in favor of treating the yeast infection in her throat first.  If that fails, we may have to go back to the dilatation, but if it succeeds we may have spared Sarah at least some risk in the midst of all of the mortal risk that she has had to face in these two short (?short) weeks.  Seddon needs to be credited with standing down three gastroenterologists who wanted to finish their planned procedure on Sarah "because they were already there."  To their credit, they recognized the peril of ignoring the instincts of a mother.

Sarah's knee is still sore, but since it did not yield a treatable diagnosis, it seems to have become an uninteresting part of Sarah's body - no one has looked at it in 24 hours.  With the help of Sarah's nurse, we removed the ACE wrap dressing tonight ourselves, and that seems to have made Sarah more comfortable.  She is still troubled by a sore and red right eye.  We'll see if we can drum up some more interest in that tomorrow.

As I sit on the cot next to Sarah's bed writing this post, I am warmed by the sight of Sarah with her laptop fired up writing the first essay of Volume 2 of her "selected essays" about her life's journey.  She has an array of the clear liquids that she is allowed tonight - jello, chicken broth, apple juice, water, even diet Coke (no ice) - and seems so far to be tolerating them.  Maybe we're getting ready to imagine continuing this new "life's journey" with Sarah and her siblings.

Oh, one more thing, I had the strangest experience two nights ago when it was my turn to sleep on the cot in Sarah's room.  In the darkest hour while Sarah slept, I awoke to a rhythmic, regular click - click - clicking sound.  It seemed incredibly loud in the otherwise silent hospital room.  Oh my God, I thought, the heart valve!  This is what Sarah will be listening to for the rest of her life.  I thought if this sound was locked inside my most vital organ that I would not be able to tolerate it.  Then I remembered the large wall clock in her room with the second hand that jumps with an audible click from second to second, and felt relieved.  At least the passage of time makes more noise than Sarah's renovated heart.

January 20, 2011 - 1 PM

This will be a short update...Sarah has been comfortable over night thanks to not eating anything but sips of clear liquids and to the wonders of good pain medications.  She would have had a more fully restful night, but at 1 AM she and Seddon were awakened so that an attempt to withdraw fluid from her swollen right knee joint could be made.  Septic (or infected) joints are one of the serious complications of endocarditis (if the heart infection weren't serious enough by itself), and this can occur days to even a week or more after the diagnosis of endocarditis.  She had had an xray of her knee in the late evening, which left the orthopedic team with at least the suspicion of a joint infection.  That led to the necessity of obtaining a sample of fluid from her knee to examine for bacteria.  Unfortunate timing, but important endeavor - with a good outcome since no evidence of infection was found.

Sarah was scheduled to have the endoscopy (scope inserted down the esophagus into her stomach to look around) to examine her esophagus, stomach, and upper small intestine this morning and had to go without anything by mouth after midnight.  However, this morning we learned that the procedure would not occur until 11 AM, and then, a little later, we were told that her case had been bumped to 4 PM.  The good part of nothing by mouth is that there is nothing to stimulate retching and reflux, the bad part is that Sarah is terribly hungry (which also has a good part in that she has her appetite back).  More nesting Russian dolls, I guess.

Overall, except for looking a little gaunt, Sarah continues to recover well from her multiple surgeries and from the main infection.  She is slowly regaining some strength, and had the stamina (more than I did) for a complete game of Scrabble this morning.  She was also pleased to receive by FedEx today, the book of her essays that her brother, Reed, and his girlfriend, Lucy, had arranged to be published as a Christmas present.  The Selected Essays of Sarah Savage Cooley.  Some of you may be privileged, if you are authors yourselves (and a member of her Authors List), to have access to Sarah's essays on Facebook, but it is an exclusive group I'm afraid that includes her author cousin and her English major brother, but not her parents.

Overall, a better day so far than yesterday.  Her knee is not proving to be a serious matter, her right eye is improving with eye drops, and we are hopeful for answers and specific treatment for her gastrointestinal problem after her endoscopy this afternoon.  More later...

January 19, 2011 - 7 PM

I'm afraid that the predominant message of remarkable progress toward recovery of most of the previous posts has obscured a problem that we have been worried about and grappling with since Sarah's admission.  That problem has now complicated Sarah's course so this post, I am sorry to say, cannot have the positive tone of many of the others.

I'll try to be civil, but if I didn't think that emoticons were a little silly, this might be the place for an angry one, or a frustrated one.  Don't misunderstand what I feel the need to say, Sarah has had great, literally life-saving care thanks to amazing expertise and resources and fabulous nursing care for which we are so grateful to all involved.  But...

As her cardiologist said the other day, "Sarah comes with a history."  In fact, all patients, even the newest of newborns, come with a history, and doctors need to familiarize themselves with this history and continually take it into consideration.  Patients also come with a body, the assessment of which is called a physical examination.  Even in this age of advanced imaging technology, the physical examination can be informative.  Finally, to use that advanced imaging technology to its full advantage, it is important to be looking not only for what was in question but also for the unexpected, unanticipated, and seemingly unrelated.

Prior to this hospital admission as she was becoming ill with endocarditis, Sarah lost her appetite, stopped eating her usual foods, and lost weight.  Soon after admission, she began have heart rending (hers and ours) bouts of retching with even small tastes of nearly all foods. The retching was made worse by long periods of severe heart burn and sore throat related to refluxed stomach acid.  She tolerated sips of clear liquids, Popsicles, some applesauce, and almost nothing else.  This "symptom" has continued unchanged to this moment except that her open heart surgery left a great vertical incision down the center of her chest - imagine how 40 minutes of retching and gastric reflux feels with that.  We began saying last week that we believed her intolerance of food had a specific cause, that she had a history of GERD (gastroesophageal reflux disease) and might have developed inflammation of her esophagus (esophagitis), that just a year ago she had developed an obstruction of the 26 year old repair of her blocked intestines that had been done only hours after her birth - her symptoms a year ago were very much like her symptoms now.  (Yes, Sarah has a history.)  We asked each day for an assessment of her symptoms, not just treatment.  We hoped for the creation of what in medicine is called a differential diagnosis, which is a list of all of the things that could be causing a symptom or set of symptoms.  Then a process of elimination takes place ruling out all of the causes that don't fit - hopefully, finally leaving the real culprit.  We suggested a gastroenterology consultation.

Today, finally, Sarah was seen by the gastroenterologists who reviewed Sarah's history of bowel surgery at birth, bowel obstruction a year ago, and current symptoms - her history.  They looked at all of the information on the CT scan done last week before Sarah's leg surgery to look for emboli (clots) in the blood vessels of the bowels (there weren't any).  They listened to her family.  They examined her.  They developed a differential diagnosis for her problem.   The process of elimination led quickly to the conclusion that Sarah probably has a recurrence of the bowel obstruction that she was hospitalized, diagnosed, and treated for a year ago in this hospital.  She will have to have an endoscopy tomorrow morning to re-dilate this narrowed area.  The good news is that this may solve the problem, the bad news is that she will have one more procedure, one more anesthesia, one more recovery room experience - and all of this information was available a week ago. 

How to digest this?  It is hard to be angry at the people who saved Sarah's life and nourished her recovery from major surgery.  No doubt they want the best for her and for their handiwork.  The problems are less individual and personal, and more systemic and cultural - not very satisfying targets for a parent's rage.  (Did I say rage? - well, I'm mostly tired, sad, disappointed, and upset for the extra week of misery that Sarah has experienced.)  The remarkably complex care provided in great tertiary medical centers is founded on highly specialized knowledge and skills.  However, that same specialization can create disastrously fragmented thinking.  The absence of a holistically-minded expert generalist physician responsible for integrating findings and opinions of various specialists and tests with the patient's history and physical examination places a patient with complex problems like Sarah's at risk.

Sarah's care may also be affected by the fact that her history is that of complicated childhood onset conditions which are generally unfamiliar even to the most sophisticated adult medical and surgical specialists.  The life-long implications of duodenal atresia repaired shortly after birth may be lost upon adult-oriented physicians with the possible exception of the gastroenterologists - who were the last players to join the game in Sarah's case.  And what about the redness of her right eye that also worries us?  What about the painful and swollen right knee that turned up today?  One thing at a time is perhaps best or the best we can expect.

This wasn't what I'd planned to write about today.  I thought it would be more about pacemakers, Coumadin, home care, and rehabilitation.  Looks like those topics will have to wait for another day.

January 18, 2011 - 3 PM

It's hard, I'm sure, to anticipate another procedure when the only two in recent memory were vascular surgery on a major artery and open heart surgery with mitral valve replacement.  Sarah was understandably apprehensive though bravely willing to go forward.  Fortunately, she had an early AM date in the cardiac electrophysiology lab allowing her to get it finished before noon.

The EP cardiologist did a great job of explaining the procedure.  Small 1 inch long incision below her left collarbone, catheter inserted through a nearby vein to advance the pacemaker wire to the inside of the right side of her heart, pacemaker slipped in (about the size of a stack of 3 or 4 silver dollars), and wound closed with super glue (!).  Turns out, of all the elements of this gentle explanation, Sarah keyed most on the absence of stitches.  However, she gave the cardiologist a raised eyebrow and skeptical glance when he said "super glue."

In the US and the world, there are three major manufacturers of pacemakers - Medtronics, Boston Scientific, and St. Jude.  The good news is that they are all good, and we don't have to do the shopping.  DHMC rotates brands to avoid favoritism.  The vendor representative attends the procedure to assure the latest equipment and accessories.  Since Sarah has good electrical beats in her small chambers (atria), the pacemaker will stimulate her larger ventricles to contract just following each atrial beat.  This will allow her heart to respond naturally to variations in activity with a slower and faster rate dictated by her own atrial heart rate.  Her situation also means that she has only one wire instead of two - one less piece of hardware to malfunction or cause trouble.

So, Sarah's pacemaker procedure was completely uneventful.  I was able to attend her awakening in the recovery room.  The only stressful moment arose when Sarah returned to her room, and her mother noticed her blue lips.  Before she could turn up the oxygen to 100%, I was able to mention the grape popsicle I had fed her in the recovery room.  She has a small dressing, and the EP cardiologist said that he was able insert the pacemaker close to the surface but still in a way that it is not easily visible.

Now Sarah will begin a five to seven day process of anticoagulation with Coumadin.  With an artificial mitral valve, she will need to continue Coumadin for the remainder of her life.  It still seems better to think day to day, but the prospect of getting home within a week is tantalizing at this point.

Thank you all for your supportive comments and messages here and on Sarah's Facebook page.  Today she asked for her laptop for the first time, so her feisty voice should soon be heard again in Facebook nation (or should that be world?  or universe?).

January 17, 2011 - 7 PM

I hope that most readers of this blog have been thinking no news is good news all day.  Sarah wouldn't want you worried.  Mostly, we've been waiting to resolve the pacemaker question - but it's amazing how what you'd think was a pretty idle day can be so full and pass so quickly.

So get to the point, right?  Sarah's going to need the pacemaker, and this will most likely happen tomorrow - hopefully early if she has to go without anything by mouth after midnight.  A great deal of medicine is based on odds and percentages - the so-called evidence base for doing things.  Oddly (so to speak), the odds don't always make the decision for you, because there are too many factors to consider.  Anyway, when one of the risks is sudden death, the odds don't matter, because the safest course is the only course.  So the decision becomes pretty obvious.

But, the challenge becomes convincing Sarah of the necessity of one more procedure, one more scary, lonely trip to the OR, one more painful site on her body - and convincing her yet again that she did nothing to deserve this.  I'm going to need a pacemaker myself before we are home again!  Or a heart transplant...

Health care decision-making is also like opening up a set of Russian nesting dolls or peeling an onion.  So now that we have decided to have the pacemaker, do we want it just under the skin of her upper left chest (simpler to put in, less post-operative pain, easier to take out for battery changes) or deeper, under the pectoralis (chest) muscle (less visibility to the device, less vulnerable to bumps, less of a daily reminder of the nightmare that Sarah is still experiencing).  On this decision, the doctors have no opinions of their own - totally up to us.  How empowering!  Needless to say, we haven't quite resolved that one yet - you'll have to tune in tomorrow to find out.

Now the good news - we're out of the ICU and back in the Intermediate Cardiac Care Unit where we started here on January 7 - back to a larger room with its own bathroom and nurses with whom Sarah began this difficult journey.  It feels like an important step toward home.

But the Teddy Bear/Dog/Bunny controversy remains...Sarah seems to have no difficulty simply accepting a tri-species creature with features of all three, but others seem to have strongly held views.  Scroll down to the bottom to view photos of Barry; weigh in or draw your own private conclusion...