Monday, March 31, 2008

The Waiting Place

The waiting isn't fun; but I so much appreciate all of your thoughts and prayers as you wait along with us.

The other day while we were at Northwestern, I started thinking of  "Oh, The Places You'll Go" by Dr. Suess - a book I read countless time to Shawn when he was young.


You can get so confused

that you’ll start in to race


down long wiggled roads at a break-necking pace


and grind on for miles across weirdish wild space,


headed, I fear, toward a most useless place.


The Waiting Place


…for people just waiting.


Waiting for a train to go


or a bus to come, or a plane to go


or the mail to come, or the rain to go


or the phone to ring, or the snow to snow


or waiting around for a Yes or a No


or waiting for their hair to grow.


Everyone is just waiting.


Waiting for the fish to bite


or waiting for wind to fly a kite


or waiting around for Friday night


or waiting, perhaps, for their Uncle Jake


or a pot to boil, or a Better Break


or a sting of pearls, or a pair of pants


or a wig with curls, or Another Chance.


Everyone is just waiting.

And in the story the character breaks free of the waiting place and in the end goes to on to move mountains.  As will Shawn.

Saturday, March 29, 2008

anatomy lesson





Here's a sketch the doctor did for us of how he took the biopsy. (No, he doesn't print like that; I added the labels!)

His reason for choosing to cut through bone at an angle is to avoid nicking the aorta just below the thymus. Sounds like a pretty good reason to me.

Friday, March 28, 2008

Healing power

Zeke is providing much needed comfort to Shawn as he recouperates from yesterday's trauma.

Many Thanks

There are so many people to thank for helping us get through the past few days.

Walter and Sheryl for feeding us Wednesday night. The chicken soup, bread, pasta were excellent.

Mark and Evelyn for feeding us Thursday night. The turkey meat loaf, asparagus, rice pilaf, bread, and cookies were great to have waiting for us when we finally got home from the hospital. And Noah, Naomi, Rebecca - The get-well card with all the Camp Shalom pictures brought a big smile to Shawn’s face.

Linda for taking care of Zeke Thursday evening.



A big round of applause for our guardian angels at Northwestern:

Susan for bringing us coffee, sitting with us during the procedure, checking on Shawn’s progress, and the “spirits” to celebrate the end of an ordeal. You were a big help to two very preoccupied parents.

Dr. G for a few needed laughs, keeping us posted on the delays, and getting Shawn through the procedure safely under general anesthesia.

Dr. N for putting our minds at ease, performing the biopsy with skill, and checking in on Shawn many times before and after the biopsy.

Dr. S for being the best doctor Shawn has ever had and can ever hope to have.



And last but never least, thanks for all the thoughts and prayers from family and friends.

Thursday, March 27, 2008

Ready to leave

Out of recovery and ready to leave. Shawn feels like he's been in a
barroom brawl - and I think he lost.

Procedure went fine

Just talked to the doctor. Shawn's awake and in recovery, will be
there an hour or so. They took multiple samples, most likely won't
know much more until Monday or Tuesday. His blood pressure remained
fine during the procedure, very good news.

Sent from my iPhone :-)

Let the biopsy begin

They just took him back. Now the real fun begins...more of the waiting
game...or as Dr. Suess says, we're in the waiting place. Where all we
do is wait, wait, wait, wait.

Sent from my iPhone :-)

Latest time estimate: 3:30

They are wrapping up the previous operation now, guessing about an
hour till they are ready to start Shawn.

Delay

Afraid this isn't going to start for another few hours, the machine that the anesthesiologist needs is still in use in another operation
that is going longer than anticipated. They think it will be at least 2:30, possibly longer. I'll post again when they take him back.

Sent from my iPhone :-)

Ready for the biopsy

We're here and ready - just talked to the doctor who will do the
procedure. He said it should last about an hour. He'll have a
pathologist with him to determine both where and how much to collect.
We're waiting now for the anesthesiologist to come by.

Here's a picture of Shawn. I wonder who he's talking to? :-)

Wednesday, March 26, 2008

Phone? Who needs a phone?

Webcams and iChat are much better than just talking on the phone! Here's how Shawn and Arie keep in touch while he's here in Chicago.

Tuesday, March 25, 2008

Biopsy Re-Scheduled - Thursday at 1:00

There was some mix up in the scheduling, the biopsy will be on Thursday, not tomorrow. Apparently there was some miscommunication about whether they'd need an anesthesiologist or not; they do and can't get one for tomorrow morning so the procedure is now rescheduled for Thursday at 1:00.


On the plus side, I have a new friend Gloria from the radiologist's office - who I've talked to quite a few times now. She's been super nice and I feel like I know her; it will be good to meet her on Thursday. She was concerned about us taking time off from work on Wed. just to have the procedure moved to Thursday. Luckily for us we're both flexible enough with work for that not to matter. When she first said there was a problem with tomorrow I was envisioning her saying they couldn't do it till next week which would really have been a problem as Shawn's already on his way home! One day in the scheme of things is pretty minor. Although I'm not sure Shawn will see it that way when he gets off the plane...


In fact, I've got to go; it's time to go pick him up now.

Sunday, March 23, 2008

A prayer for healing

Heal me, O Lord, and I shall be healed;
save me, and I shall be saved,
for you are my praise. (Jer. 19:14)

Friday, March 21, 2008

Biopsy Scheduled

Just talked to the interventional radiologist's office - the biopsy will be done Wednesday, March 26, at Northwestern. We need to be there at 9:00, the procedure itself is scheduled for 10:00.

I've also heard from a friend of mine who works at Northwestern, she knows this doctor well and speaks very highly of him. Her summary of him is "we're in very good hands." Not that I expected anything different but it's very nice to hear.

Thursday, March 20, 2008

Happy Purim

In a comment, Leonard emphasized the importance of hope during this difficult time and highlighted the spirit of the Purim holiday. His words deserve repetition:
The message of Purim is that after we are thoroughly convinced that we as people can do nothing to escape a bad situation, H" provides an unforseen (and sudden) rescue. Perhaps all this happened at this very time to give you that hope.

As we wait to hear from the interventional radiologist who will perform the biopsy on Shawn, we will hope that rescue is at hand.

Three years ago, we were in Israel during Purim and had the pleasure of participating in one of the local parades. This video is from a much larger Purim parade in Israel, but captures the joyous celebration.

Wednesday, March 19, 2008

time to move on

Enough about the Mayo, time to concentrate all our efforts on getting closer to the recovery part of this journey. At some point I'm planning to write a letter to the clinic, but I feel like I need to get a little bit of distance from the experience first. As you can most likely tell, we were all rather frustrated and angry about the week, but it's over now and here we are.


On to the next step. We're waiting to hear back from the interventional radiologist who will be doing the biopsy. I talked to his office yesterday, they said they'd get back to us after he'd approved the procedure. I believe he's out of town until Friday so it may be a few more days before we have a definite plan in place.


In the meantime, while Shawn's not feeling any better he's certainly happy to be back at school.

Monday, March 17, 2008

A final note on the Mayo Clinic fiasco

I want to put Shawn's less than valuable evaluation at the Mayo Clinic into context. Shawn's doctor in Chicago had extensively discussed the case with the head of endocrinology at the Mayo Clinic. It was on the recommendation of this Mayo Clinic specialist that we brought Shawn there for "a fresh set of eyes." This seemed reasonable to us because of the complexity of the clinical presentation and the potential risk associated with the possible next steps. Thus, we went to Rochester expecting that Shawn would receive a careful and thoughtful evaluation to guide us in making difficult decisions.


And to add insult to injury, they never even looked at the scans of Shawn's thymus, the suspected bad actor in this nightmare. We brought the digitized copies with us and they were never uploaded and read by the Mayo radiologists. If this is how they treated us after coming there at the suggestion of the head of endocrinology, I shudder to think how they might have acted if we had just wandered in off the street.

Sunday, March 16, 2008

Afraid I couldn't agree more

In general, I try to look for the positive, especially in trying situations. Sometimes I have to try harder than others. But I'm afraid I have very little positive I can say about last week. I agree with everything Dave said in his post The Mayo Mystique is a Myth.


I always try to keep in mind that what we see is only part of the big picture - that things happen behind the scenes that we don't know about. I kept thinking throughout the week that this must be the case - if the endocrinologists thought this was neurological and the neurologists though it was endocrine, the coordinating internist would be talking to them and getting them to talk about other possibilities. It really never occured to me that at this point that all these symptoms would simply be dismissed, that he'd be told "on average your blood pressure is fine", and that "if there was anything seriously wrong, we would have found it." As Dave said, the internest barely knew Shawn's initial history, and the most he did with the various reports was scan them over and tell us everything looked fine. Despite commenting on the first day about how helpful the medical write-up from his doctor in Chicago was, he didn't seem to have read much of it. His logic also floors me - his original explanation for wheezing and shortness of breath was that Shawn had asthma - then after testing for asthma he reports "you don't have asthma, so you're fine." But what about the fact that these symptoms are still there and that they now aren't explained by asthma? It just felt like he wasn't doing anything other than looking at little pieces, the big picture of a real person sitting there with a problem seemed to be missing. Where was the intellectual curiosity if not the human compassion? I'm afriad in our dealing with him, we saw neither.


Those of you who know me know that I'm rarely speechless, but in his office I found it hard to form a sentence. I actually found myself stuttering at one point when trying to ask a question.


So where do we go next? As Dave said, we are so incredibly blessed to have a doctor here that does not believe that Shawn is fine and all his symptoms are harmless or normal. I think Shawn put it best when he said he wanted to go back to Chicago "where we have a doctor who actually cares." I seriously do believe he has been sent to us as an answer to my prayers. I will never be able to fully express how grateful we are to have him as Shawn's doctor. He has always exhibited both the compassion and the intellectual curiosity which makes him such a fine doctor. I just wish we could have found more like him at the Mayo who could have helped him in his search for the best way to treat Shawn.


After discussing it all yesterday, we've decided to go ahead with a biopsy of the thymus. Meanwhile, Shawn returned to school this morning and will spend this next week trying to forget about last week's ordeal before coming back here for the biopsy, sometime the week of the 24th. It will be a needle biopsy, performed as an outpatient procedure at Northwestern. I'll put more details here once I know them.

The Mayo Mystique is a Myth

The Mayo Clinic is supposed to be the pinnacle of American medicine. They claim to have the best doctors and the best patient care practices, along with the best technology. They do have technology in abundance, wrapped up in very pretty buildings. However, nothing we saw over the past week indicates that their doctors are skilled diagnosticians or capable of effective patient care.


The literature provided by the Mayo Clinic emphasized the importance of patient participation. Three of Shawn’s doctors dismissed his questions with condescending remarks. They provided little or no insight into the diagnostic tests they had ordered and spent no time discussing the results. There is absolutely no excuse for how he was treated by these so-called doctors. The internist coordinating Shawn’s care and the neurologist gave no indication that they had read his records as they made numerous comments amply demonstrating their ignorance of his history. Only one physician, the pulmonary specialist in the allergy clinic, treated Shawn with respect, answered his questions, and took an interest in his case. Twenty five percent is a failing score no matter what the game, but in patient care is a disgrace. It indicates that Mayo Clinic’s reputation for patient orientation and care is vastly overrated.


The internist responsible for coordinating Shawn’s care was one of the most inept clinicians I have ever seen. He never took the time to digest all the medical records Shawn brought with him. He did not even take the time to review the exhaustive medical history questionnaire that the Mayo Clinic sent for Shawn to complete prior to his first appointment. The only questions he asked were based on the major symptoms Shawn wrote on a card in the waiting room. He never bothered to order a review of the CT scan from Northwestern showing a node on Shawn’s thymus. His working hypothesis was that most of Shawn’s symptoms could be accounted for by asthma, sleep apnea, allergies, and maybe a neuromuscular disorder like multiple sclerosis. After all those possibilities were disconfirmed, he blithely said everything looks good. He even had the audacity to suggest that maybe anxiety was responsible for Shawn’s flushing spells, blood pressure spikes, chest pain, and shortness of breath. If this pathetic excuse for a doctor had bothered to read the medical history, he would have understood why this simpleton hypothesis was rejected long ago. Ignorance of a case history is incompetence regardless of whether it stems from arrogance, disinterest, or insufficient time.


The Mayo Clinic also emphasizes the importance of involving loved ones in your care, encouraging patients to bring someone with them to ask questions, relate observations regarding symptoms, and help remember instructions. The internist coordinating Shawn’s care told him there was no need to include us in the initial evaluation and only grudgingly included us in the follow-up visit to discuss findings.


The Mayo Clinic also prides itself on taking a team approach to a case and integration of care. This is clearly another platitude masquerading as reality. Teamwork is not ordering evaluations from specialists. Integration of care does not consist of reading (and misinterpreting) summary reports from specialists. Here is my favorite example of teamwork and integration of care from our five worthless days at the fabled Mayo Clinic. The pulmonary specialist in the allergy clinic looked over the results from testing, saw no evidence of asthma or any allergic component to Shawn’s symptoms, but was very concerned about pulmonary weakness. He took the time to call the internist coordinating Shawn’s care to discuss the finding, noting that it should be followed up and could be due to a nasty variant of myasthenia gravis. The internist expressed annoyance that the pulmonologist had called him when he was “in the middle of doing something else” and dismissed the pulmonary weakness as probably just a “red herring.”


Here is my list of the top ten greatest twits from Shawn’s visit to the Mayo Clinic.


10. The internist told Shawn not to worry about his focal abdominal pain and bouts of diarrhea; it was probably irritable bowel syndrome. “My son, who is twenty-six, has irritable bowel syndrome and he gets relief from Metamucil. I have irritable bowel syndrome, too. Nothing to worry about.” The irony of knowing more about your doctor’s medical history than he apparently knows about yours is too great to pass up.


9. On Monday, “I will send your scans down to radiology to be read immediately.” On Friday, “ Well, I guess those scans should be sent down to radiology.”


8. “The flushing and other symptoms could be due to anxiety.” Never mind the medical history that argues against that possibility. Well, doctor, how do explain the fact that they occur in his sleep and during innocuous activities? “I don’t know – I have not seen that.” How do account for the recent change in the flushing pattern with the redness greater on one side of his body? (Hint: You told Shawn at the start of the week that asymmetric flushing could be due to something like multiple sclerosis.) And all that bleeding and bruising?


7. The neurologist suggested that his muscle weakness might just be due to inactivity and should be helped with exercise. When Shawn pointed out that his blood pressure and heart rate skyrocket with physical exertion, she said, “oh really, you really should have that checked out.” Thanks for reading the medical records in that pretty folder.


6. Hypertension? “The six hour average levels look fine. Don’t worry about those spikes. They are only a problem if you have an aneurysm.”


5. The endocrinologist spent a few minutes with Shawn after having a medical resident conduct the history and physical examination. Her words of wisdom were priceless. “There are no other tests that should be done at this point. Why would you want to have more tests?”


4. Pulmonary weakness? “Probably just a red herring.” How silly of the pulmonary specialist to be concerned.


3. “ It looks like you don’t have asthma or sleep apnea, so everything looks good.” But, but, but those were the things you thought might account for Shawn’s hypertension, tachycardia, and respiratory symptoms…


2. “Don’t worry about communicating the results to your hometown doctor. I talk to hometown doctors all the time.” Be sure to tell Shawn’s hometown doctor why you did not read the medical records. I am sure he will find your cursory knowledge of the contents to be extraordinarily amusing.


1. The parting words of wisdom from his primary care doctor: “If there had been something seriously wrong, we would have found it.” I seriously doubt it.



The Mayo Clinic has beautiful facilities, friendly support staff, and the best technology.  Too bad the medical care Shawn received fell far short of its reputation.

Shawn has been blessed to be under the superb care of his physician in Chicago. I shudder to think where we would be without this doctor. He has been the answer to our prayers. The Mayo Clinic was just another trial to endure.

Friday, March 14, 2008

leaving here tomorrow

I'm not sure that we actually learned much here this week other than there are lots of other things that could explain away some of his symptoms and he doesn't have any of those.

Meanwhile we'll be following up with his Chicago doctor when we get home. I wish I could say that our experience here at the Mayo was a good one but I'm afraid we all found it rather frustrating and dismissive.

Thursday, March 13, 2008

More tests...


Neurology added a few more tests to the schedule; more blood yesterday, an EMG today and then a return visit to Neurology this afternoon.

I've been taking photos during some of the many many hours spent in waiting rooms. You can see them all at http://sheri.smugmug.com/gallery/4497512_xiEDb#264981001.

Tuesday, March 11, 2008

Too tired to eat...

What a fun day - started by me waking Shawn up with drinks in bed - the second round of the stuff he had to drink, along with the lemon chaser. (I bet none of his friends are getting drinks served in bed during their spring break).

They couldn't put him to sleep today for the colonoscopy because his blood pressure was too high - so they gave him drugs instead. Free drinks AND free drugs, what better way to enjoy spring break?


The drugs may not have put him completely to sleep but they certainly made him loopy - came back to the room and ordered dinner, but he didn't get a chance to eat much before he fell asleep.


Monday, March 10, 2008

The Search for Lemons

Tonight and tomorrow morning, Shawn gets to drink lots and lots of fun medicine to prepare for the colonoscopy. In the instructions, it mentions that sucking on a lemon before drinking it will make it taste a little better. So just before he had to start the medicine tonight at 6, I went in search of lemons.


The cafeteria was just closing, but also I don't think I saw lemons there earlier today. Found nothing at the drugstore I found the next building over, nor any of the fast food places nearby. went back to the hotel with a few bottles of Sierra Mist for him, but no lemons.


As he took the first of tonight's 4 doses, my foggy brain finally came up with the perfect place to get lemons - in a bar! We're staying at the Kahler Inn and Suites, which has no bar, but the Kahler Grand Hotel a block away does - so off I went in search of lemons.


A kind bartender at the bar handed me a few lemons. Shawn informs me that it does make the medicine taste slightly better. I think finding lemons may have been the highlight of my day.

Day One at the Mayo

Pretty busy day so far. Started with checkin at 7:15; then Shawn saw his primary doctor and got his schedule.

Today:

  • primary doctor
  • 9:20 blood tests
  • 10:00 allergy tests
  • 1:00 pulmonary function with methacholine
  • 2:20 electrocardiogram

Tuesday:

  • 2:30 colonoscopy (unfortunately, this means that as of 2:30 today, he's on a clear liquid diet until this is over)

Wednesday:

  • 7:15 6 hour blood pressure
  • 10:00 pulmonary function lab for a home overnight test
  • 1:15 endocrinology consultation
  • 2:45 neurology consultation

Thursday:

  • 8:15 ear/nose/throat consultation

Friday:

  • 2:15 asthma/allergy clinic

Final consultation for allergy/asthma is for the moment scheduled for next Tuesday and then a final appointment with his primary doctor also on Tuesday.

However, they have a system here where if you have at least two free hours, you can try to go to an appointment early; if he can do that Thursday and Friday, he may be able to get finished by the end of this week instead of having to wait till next Tuesday.

His doctor here commented on the write-up that he got from his Chicago doctor - said it was great and he wished all doctors would do something like that.

Saturday, March 8, 2008

Nice wheels!





We'll be traveling to Minnesota tomorrow in style - Shawn is the proud
owner of a brand new 2008 silver Prius! At least the drive will be fun.

Tuesday, March 4, 2008

"Made it Through Today"

As some of you may know, one of my all time favorite artists is Keith Urban.  I was going through some old songs and playing guitar and found myself playing this song tonight and after thinking about it, realized that it's the perfect sentiment for my life at the moment.  Constantly I'm asked how I'm doing.  When I think about it, there's really not a good answer.  The replies that run through my mind are usually a little less than polite because my frustration with this entire situation is getting to me.  However, the real answer each day is that I'm grateful to God for getting me through the day which is truly a blessing.  Here are a few passages from the song:

As I turn out the lights
And bow my head to pray
The answered prayer I'm thankful for
Is I made it though today

Now I'm not trying to change the world
I'm just trying to find my way
And I stumble now and then
But I made it through today

The deep and honest truth is that my life at this point consists of understanding and perseverance.  Understanding that while my life at the current moment consists of pain and trouble doing the everyday activities, I still have a life worth being thankful for.  I have a girlfriend who is a rock in my life and without her, I wouldn't be as strong and happy.  She's made me realize that no matter how bad some parts of life can get, there's always something else that can keep a smile on my face.  I thank God for her everyday.  My students who have worked incredibly hard and have come from a group of fighting individuals to become a community.  They have all pushed themselves and continue to push themselves to do better which is all that I ask.   I ask them to be the best they can be and they've helped me apply that to my life.  My family who has been here through it all and I can't be grateful enough for them either.   

I may stumble now and again and I'm certainly going to have my moments of pure anger and frustration but I will always thank God that "I made it through today".