Cured At Last

Last night at 5:45 PM, Ernie succumbed to the ravages of cancer.  He loved life and fought valiantly until the end.  I do not know what I will do without him.  Rest in peace my darling.  You are gone from my sight but forever in my heart. 

Obituary

Ernest James Fackelman, 67, beloved husband of Cynthia Skaar, died peacefully at home on April 2, 2015 after a four year battle with cancer.  Ernie grew up in Elkhart, Indiana.   He had an idyllic childhood, fishing, hunting rabbits, watching the latest Westerns at the Elco Theater and making explosives, zip guns and rockets in the basement with his big brother. 

Ernie attended St. Thomas the Apostle Catholic School where he had a reputation as an exuberant student who enjoyed life to its fullest, regularly securing him “hall time” and more than a few raps on the knuckles by the Sisters.  During these years, he amassed a group of buddies that remain his friends to this day.  Ernie advanced to West Side Middle School, setting the school record for running the hurdles—a record that stood for more than 30 years.  He graduated from Elkhart High School in 1965.  During high school he gave up sports to work so he could buy his first car and the one he always loved the most—his midnight blue 1930 Model A Ford. 

Ernie went on to attend Purdue University, earning a Bachelor of Science Degree in Economics with Distinction and Honors and a Master of Science Degree in Business.    Upon graduation, he was drafted into the U.S. Army.  He distinguished himself in basic training and was selected for Jungle School in Panama and then sent to Viet Nam, joining a reconnaissance platoon in the 25^th infantry division.   While in Viet Nam he was awarded the Bronze Star and the Army Commendation Medal for Valor in Combat.

After Ernie was discharged, he began his business career starting at Hershey Foods and then went on to The Pillsbury Company in Minneapolis where he met his wife, Cyndi.  In 1978, Ernie moved to Winston-Salem to join R. J. Reynolds Tobacco where he was Vice President of Business Information and Analysis.  After 20 years, he took early retirement and began a consulting company with his wife.  He closed his business in 2011 to begin his fight with cancer. 

Ernie loved Winston-Salem and involved himself in the community. He served on the local United Way Board for five years followed by seven years on the Board of the United Way of North Carolina, retiring as Board Chair.   At his death, he was a fundraising committee member and staunch advocate of the Larry Leon Hamlin and Sylvia Sprinkle-Hamlin/Winston-Salem Urban League Endowed Scholarship at the University of North Carolina School of the Arts—a scholarship fund for young artists-of-color--and a member of St. Leo the Great Catholic Church.  He was also an enthusiastic golfer, historian, collector and traveler and loved spending time at his Blue Ridge Mountain cabin. 

Ernie is survived by his wife of 32 years, Cyndi, and his brother, Thomas Fackelman (Kathy) of West Lafayette, Indiana.  He was preceded in death by his parents, Thomas and Evelyn Fackelman. 

The family will receive friends on April 10 from 5 to 7 PM at Salem Funeral Home at 2599 Reynolda Road.  A memorial service will be held on April 11, at 1 o’clock PM at St Leo the Great Catholic Church in Winston Salem and the weekend of July 10 in Elkhart, Indiana. 

The family wishes to thank the staffs of Johns Hopkins Scleroderma and Kimel Cancer Centers, Dr. Rich Daniel at University Dental and the staff of the Hospice & Palliative Care Center for the extraordinary care they gave to Ernie and also Father Brian Cook and the many relatives, friends and neighbors who helped support him during this difficult time. 
 

The hardest blog of all

This is the blog that I hoped I would never have to write.  Ernie’s symptoms have been progressing rapidly despite the chemotherapy.  Because of this, the oncologist ordered another scan.  Unfortunately, the scan showed that the tumors in his throat and lymph nodes are all growing. 

Effective Sunday, we withdrew from chemotherapy and entered hospice care.  Right now, Ernie is at the Kate B Reynolds Hospice Home where they are working on pain and symptom management.   In two or three days, when these things are under control, we will return home for the duration.  We are hoping for some good days when Ernie could receive visitors but we will have to play that by ear. 

My apologies to all of you who have written, called, emailed and texted.  Ernie’s symptoms have progressed so rapidly that we have struggled to keep up.  We are so grateful your concern and attention.  It helps us tremendously to know that we are not in this alone. 

Here Comes The Bride

Ms. Cynthia J. Skaar Weds Mr.  Ernest J. Fackelman (again) in Catholic Ceremony

 Ms. Cynthia J. Skaar and Mr. Ernest J. Fackelman were united in marriage in a Catholic ceremony on Saturday, March 21, 2015 at half past five o'clock in the afternoon at the Cancer Center, Wake Forest Baptist Medical Center, room 637 in Winston-Salem, NC. The private ceremony was officiated by Father Brian Cook of St. Leo the Great Catholic Church.

The bride wore a chartreuse V-neck sweater with matching pashmina shawl and black slacks, adorned with a silk flower wrist corsage (no real flowers allowed in the oncology floor of the cancer center).   The groom wore his best flannel pajamas and white cotton robe.  His boutonniere matched the bride’s wrist corsage.  

Following the ceremony, the couple departed for home where they plan to spend the rest of their lives together.   It was the most joyful of days and made them both feel young again. 

Final Plans

We have now heard from the tumor boards at Wake Forest and John’s Hopkins.  Both are recommending a 3 drug chemo cocktail very similar to the one used to treat Ernie initially.   This combo is supposedly well tolerated with less toxicity than most other combinations. 

We will start Wednesday, December 24,  at Wake Forest's new chemo center in Clemmons.  Ernie will continue to receive chemo weekly for 6 weeks then Wake Forest will repeat the scans to see if the drugs have been effective.  If not, the cocktail will be changed to something stronger for another 6 weeks, etc.  This is a standard-type protocol and is estimated to provide 10 more months of life--a definite improvement over the estimate of "weeks or months" that we were given if we do nothing.  The chemo should also eliminate Ernie's very sore throat and some of the swelling in his face and throat, which could enable him to talk and even swallow food again! 

The new potential wonder treatment is immunotherapy drugs.  These drugs are thought to add significantly to the expected life span and even to be potentially curative.  Hopkins is doing several clinical trials with these drugs.  However, because of Ernie's scleroderma, he is not eligible for these trials.  We asked if they would allow him to follow the protocol but not be in the clinical trial—a practice we observed when we were treated the first time.  The Medical Oncologist who is now in charge of Ernie's cancer care at Hopkins, said that these drugs are "contraindicated in cases of scleroderma because they rev up the immune system" so she could not recommend this approach for him.  

 

Of course, Ernie is not one to take "no" for an answer.  He has already contacted his Scleroderma Doctor for a second opinion.  She is a very practical doctor who understands that having scleroderma only matters if you are alive.  She promised to speak to the Medical Oncologist directly to see if there were any of these drugs she would feel comfortable with.  So we will continue to pray that Hopkins will eventually give Ernie the immunotherapy.  But everyone has been clear that there is no proven cure for Ernie's condition.   It is just a matter of time. 

 

So with this blog, we are signing off to devote our energies to the big fight.  Ten months is an average--our doctor has patients that are alive after 1 and 2 years--and Ernie is determined to beat the odds as well.

 

If you would like to "talk" to him, you can text him (336-407-3800) or email him at fackelmn@ix.netcom.com. 

 

Thanks again for all of your help and support.  You have given us the energy to carry on.   

 

Or Not

I'm sure by now everyone is wondering why it has been so long since the last blog post.  Truth be known, we got the results of Ernie's scans on Wednesday evening.  It has taken us this long to digest the results.

 

 Ernie’s scans show that the tumor at the base of his tongue is quite large (1 ½ to 2 inches).  Nothing showed on the scan he had in May so our local ENT doctor is assuming the cancer is now quite aggressive.  Also, the scans showed activity in both the left lymph nodes (it had been there before but surgery supposedly removed it all) and right lymph nodes—a brand new occurrence.  Finally, there were small lesions in his lungs that might be cancer—but could also be aspiration pneumonia. 

 

Because of the extent of the cancer, surgery is not an option as far as Wake Forest Baptist Medical Center is concerned.  Also, since Ernie has already had his life time allotment of radiation, that is out too.  That leaves chemo—which is palliative not curative. 

We will meet with the local oncologist on Wednesday but, if he tells us this chemo will be like the first round, we will probably decline as Ernie felt so bad during treatment.  The scans have also been sent to Johns Hopkins for their opinion.  There is still a possibility that they can identify  a clinical trial that Ernie will qualify for.    So now we wait for final recommendations and then decision time.  All that will happen hopefully by Friday.  It will be a long week. 

 

 

Plugged

We have been taking it easy, just trying to get to Wednesday and complete the scans.  Most of our time has been spent on symptom management.

A trach is essentially a second nose.  If your nose is running all the time, it is very uncomfortable.  If things get too dry, that can cause problems too.

After stretching Ernies esophagus, the ENT doctor felt Ernie had way too many secretions.  So he started Ernie on a medicine to dry him out.  This seemed like a blessing at first.  Far less "nose" blowing means far more sleep.  However, things took a turn for the worse this morning.

Not long after breakfast, Ernie felt he could not get his breath.  Since the ER is closer than Urgent Care, off we went.  Long story (4 hours) short, Ernie had dried "crud" in his airway (aka plugs).

The solution to plugs is "saline bullets."  We had recently gotten a supply but they came without instructions.  So, the nurse demonstrated.  Basically, you pour sterile salt water down the trach tube into your lungs!  Imagine jumping in the ocean and swallowing at the wrong time.  The idea is to induce coughing.  Works like a charm but not the most pleasant experience. (WHO THINKS OF THESE THINGS?)  It did make Ern feel a whole lot better after he got over it.

Now we can refocus on tomorrow.

Not Time Yet

After three doctors suggested that we speak with The Hospice and Palliative Care Center, we set an appointment for yesterday.  Ernie was in his workshop when the nurse arrived to sign us up.  Not too far into the conversation, she suggested that perhaps calling in Hospice at this point was premature. 

The focus of Hospice is symptom management--something that Ernie could use--in the comfort of your own home.  However, as with most things related to health care, the government calls the shots and the rules are complicated. 

To get Hospice care, you must sign over your treatment to them.  The Hospice doctors then determine your meds and care.  They only provide palliative care--no curative or life-saving measures. 

You can revoke your Hospice treatment at any time, but you must do so before seeking life-saving measures. This means, in the case of emergency, you have to call Hospice and revoke that treatment before you can call 911 or go to the emergency room.  If you don't intend to call 911, this is not an issue but we are definitely not there yet. 

The nurse told Ernie he did not look like her typical patient.  Generally her patients are not well enough to be in their workshops.  Also, since Ernie has his PET/CT scans next Wednesday, if we signed up we would just have to revoke for the test (since it is for curative purposes) and then sign up again after the test.  The nurse thought that the lymphedema massages would also qualify as seeking treatment, so we would have to revoke before each of his twice weekly massages as well. 

While it would be nice to have nurses and medicine come to us instead of running out every day, we are still very capable of doing these things.   So, we elected to continue without Hospice.  Ernie's Internist will have to provide symptom management for now. 

Again

It was difficult to come up with a name for this post.  Friends that have already heard the news suggested that expletives are most appropriate to describe the situation--Ernie's base of tongue cancer has returned. 

The local ENT doctor was concerned about how fast Ernie's swallowing and breathing were deteriorating.  When he first saw Ernie in early October, the doctor was not convinced that a trach was inevitable.  Two weeks later, it was critical. 

The rapid change in Ernie's condition made the doctor suspicious.  So, when he did the trans-nasal endoscopy, he did a biopsy as well.  He was very casual about it--one of these "while I'm in here I might as well go ahead and take some samples" kind of thing.  I think he did not want to alarm us.  Unfortunately, the biopsy confirmed his instincts. 

After several days of discussion with our wonderful medical teams here and in Baltimore, we've decided to pursue two paths simultaneously:

1.  Palliative Care:  this is a dedicated group within Wake Forest Baptist that focuses on symptom and stress relief.   They will make sure Ernie is not in pain, work on helping him get some good sleep, help us get appointments and supplies more quickly, etc.  This will be especially important if Ernie's symptoms continue to progress at a rapid rate. 

2.  Aggressive Treatment:  Ernie will have a PET/CT next Wednesday to determine if the cancer has spread beyond the base of tongue.  Once the doctor's know what areas they need to treat, they will come up with treatment options.  We have asked both the Multi-disciplinary Tumor Boards at Wake Forest and Johns Hopkins for recommendations.  We should have these about a week after the scans.  While the options are more limited and more drastic, the good news is that there are options.

Ernie took the cure once, now he will have to take the "re-cure." 

From Bad To Worse

Despite daily massages, Ernie woke up in the wee hours Monday to find his throat and airway (above the trach) swollen shut.  Because he has the trach, he could still breath just fine but he could not swallow his salvia. 

After more calls to the doctor, Ernie ended up in the OR at Wake Forest Baptist Medical Center again today for an esophageal dilation.  Basically, they sedate you and then stretch your esophagus open again.  Some people require this procedure every few weeks to months; for others, once does the trick.  Given all Ernie's edema, we are unsure how long this will last but Ernie is happy to have some relief. 

There seemed to be a LOT of surgeries happening today so Ernie's doc had to use the Brenner Children's Hospital Operating Room.  Ernie was in rare form.  After talking the nurse out of a whole vile of pain killers post surgery, he told her "I haven't felt this good since Woodstock."  I thought the nurse would split a gut.  As he was leaving, she rewarded Ernie with a stuffed bear named "Lucky."  We are hoping that is a good omen. 

The Mysterious Case of Lymphedema

After having the day off from doctor's appointments yesterday, today we dutifully trudged back to the medical complex to see an Occupational Therapist that is trained in the mysteries of lymphedema--the technical term for the swelling in Ernie's face and neck. 

The secondary lymphedema that is plaguing him happens when the lymphatic system does not drain properly causing fluid build up.  In this case, trauma from the tracheotomy combined with the existing fibrosis in Ernie's neck is the culprit. 

It seems that identifying the problem is the easy part.  There are no medical specialties in lymphedema.  Sometimes (rarely it appears) a doctor with take a "clinical interest" in lymphedema but these doctors seem to be few and far between.  So far, we have not been able to identify any locally. 

This leaves most people in the hands (literally) of Occupational Therapists or Massage Therapists that have been trained in Complex Decongestive Therapy (CDT).  CDT consists of three parts:  manual drainage of the lymph nodes through massage, "pumping"  and stretching exercises and compression. 

We are signed up for 2 sessions a week with the OT.  During this time, I will learn the massage techniques so that Ernie can get daily massages.  In addition, Ernie will do the exercises at home every day.  The compression garment will be added next week.  In case you were wondering how we would fill our time between doctors visits....    Another skill added to the resume!

Turkeys Are Safe Here

We spent 3 long hours at the doctors offices yesterday.  It seems fitting on the day before Thanksgiving that the focus was on swallowing.  If you are squeamish or about to sit down to Thanksgiving dinner, you may want to stop reading at this point.  I am going to describe the medical procedures to highlight (OK, brag about) how courageous my husband is. 

First, Ernie did a swallowing study which is designed to determine if the food is going down the "right pipe".  This study entails having a flexible tube with a camera on the end stuck down your nose and into your throat (no sedation allowed).  Once this is done, you are expected to swallow various items such a water and applesauce while the Swallowing Specialist watches.  To make it all the more appetizing, all the items you must swallow have been dyed a vivid blue-green.  Yum. 

As if this was not enough fun, the swallowing study was followed by a trans-nasal endoscopy.  Normally, an upper endoscopy is done by a GI doc who knocks you out so he can put a scope down your nose, into your esophagus and see all the way to your stomach.  Turns out a trans-nasal endoscopy is the same thing except that is done while you are awake! As the doctor drolly said, "not everyone can tolerate this".  The benefits are speed--you don't have to have an IV or be knocked out--and you can watch if you want.  Thankfully, they do numb the nose.  Afterward, the doctor said he knew Ernie would do well because of how well he handled being intubated while awake prior to his surgery.  In fact, he said the whole OR team had been impressed at Ernie's calm demeanor under very unpleasant circumstances. 

Anyway putting these two studies together, the doctors determined that whatever Ernie swallows right now is at least partly going down the "wrong pipe".   If you get enough food and drink in your lungs, it can lead to aspiration pneumonia.  Food is going down Ernie's windpipe because the muscles at the back of the throat that close off the windpipe when you swallow are not working well enough.  The fibrosis and swelling in his neck have made these muscles less flexible and harder to move. 

To overcome this, the doctor gave Ernie a workout regime--a set of five exercises, 20 reps each, twice a day--that targets these muscles.  The net of all this is that Ernie will not be eating turkey (or any other food) today but, with some hard work,  he could be eating in 4 to 6 weeks.  Yipee! 

Post Traumatic Stress

All day yesterday I had flashbacks of the trach tube coming out.  I was feeling more than a little gun shy about the daily ritual of changing the trach tie.  I kept racking my brain.  There must be a better way.  How do people who live alone manage this feat?!?

Then it hit me.  Wonder if I could put the new trach tie on and then remove the old one.  This would eliminate the vulnerable part of the operation where he has half of the old tie on and half of the new and nothing holding them together.

Sure enough, I tried it this morning and it worked!  There is enough room in the slots that the ties fit into to accommodate the ties for both trach ties at the same time.  As the old saying goes--necessity is the mother of invention.  I will definitely sleep better tonight. 

Butter Fingers

Our morning started with a rush of adrenaline. We were in a hurry to get up and at 'em as we hoped to score an appointment with the ENT to figure out how to get rid of Ernie's edema. 

As part of the morning routine, we must change Ernie's trach tie each time he showers.  The trach tie is literally that--it looks like the string that holds a bow tie in place.  In this case, it is the ONLY thing keeping the trach tube inside the neck.  There are no stitches, nothing. 

Before being discharged from the hospital, we were shown how to change the trach tie and warned that we should always change it together.  Ernie is to keep his hands firmly on the trach tube to hold it in place.  At the same time, I am to loosen one side of the wet trach tie and immediately attach one side of a dry trach tie.  When this is done, I move to the other side and repeat.  All this is to insure that the trach tube does not fall out.

By now, you have probably figured out where I am going with this story.  In our haste, and at the most inopportune time when one side of the trach tie was off, Ernie coughed.  Yes, the entire trach tube came out in Ernie's hand, leaving quite a hole in its place.

We both looked at each other.  I thought about running downstairs to find the emergency directions on how to reinsert the thing and also about calling 911.  Instead, we decided that Ernie should use the technique for inserting the inner lining (technically called the inner cannula) and put it back in.  Of course, he did just that.  Guess all this impromptu medical training we've gotten paid off. 

We did get our doctor's appointment, but not until Wednesday.  We have vowed to be careful between now and then. 

It is always something....

Things were progressing well until the morning after we saw the doctor (of course--it would be the morning AFTER).  On Tuesday, Ernie woke up with "chubby cheeks".  This is a sign that his lymphatic system is not working as well as it should be.  By evening, he was looking his normal, handsome self so we forgot about it. 

Wednesday morning was a repeat of Tuesday.  Each day was a little worse than the day before, and at night he was beginning to retain his cherubic appearance.  From Ernie's previous surgery, we feel we know what is needed--lymphedema massage--but need to get a referral from the doctor.  Hopefully that will come on Monday (we have called and emailed) as this is not only an appearance issue but is affecting his voice and lead to infection long term.   In the meantime, he is doing "pumping exercises" to try to get his system righted.  It is always something.... 

Weighing In

Part of our normal morning routine is the "weigh in."   Over the last year, Ernie lost about 10 pounds for a total weight loss of 40 pounds versus his pre-cancer weight.  When he dropped into the "featherweight" category, we along with the doctors, decided it was time for the feeding tube.  While he was waiting for the surgery and then recuperating, he dropped two more weight classes.  I joked that I was going to fight him under the name "El Flaco"  (translation  "The Thin Man").

Today the scale rewarded us with good news--he is starting to put back on some of that weight.  This will also help him regain strength and stamina.  As of today, he is officially "junior featherweight".  I always knew he was a fighter! 

The Inquisition

Today was Ernie's follow-up appointment with the surgeon/otolaryngologist.  His secretary purposely scheduled Ernie at the end of the day after Ernie told her he had "a LOT of questions" for the doctor.  "A lot" turned out to be a page and a half.   

The doctor was very patient.  I did not even have threaten to throw my body in front of the door to keep him in the exam room.  He and Ernie had a lively, give-and-take discussion.  For example...

     Ernie:  "Why do I feel crappy when I get up in the morning?"
     Doctor:  "Because you just had major surgery less than 2 weeks ago.  Plus, how much weight did     you lose?  Give yourself some time to heal."  

     Ernie:  "Purple?  Really?"
     Doctor:  "You're right.  We'll order you something else.  What color would you like?"

The long and short of the discussion was that Ernie can resume his normal activities as long as he feels able.  His voice and body will both be stronger in the morning, when he is rested, and wear out as the day progresses.  We can expect this to improve over time. 

The doctor expects the trach to be permanent but is hopeful that Ernie will be able to eat again in the long run.  He is allowed to try some Ensure or Boost or even a milk shake when he is up to it.  Our next visit will be in a week or two when Ernie's new (clear or white--not purple) trach is available for installation.   I'm sure there will be A LOT more questions. 

The Swedish Nose and Other New Things

The last few days have been filled with new things.  We had another nurse visit, a visit from a Physical Therapist, one emergency call to the ENT doctor, one routine call to the ENT clinic and one call to the manufacturer of the "Swedish Nose."  Here is what we learned.

Although we had prior experience with a feeding tube, we did not have the mic-key button before.  The benefit of the mic-key button is that you can eat "meals" instead of having a machine that slowing gives the food over time.  Well, it seems we have been a little exuberant at meal time, giving the food too fast.  The nurse advised us to allow 20 minutes per meal. 

Most of our excitement involves the trach--new territory for us.  Evidently, when you have a trach, especially at first, humidity is your friend.  At night, Ernie has a special humidifier that attaches to the trach to deliver warm, moist air directly to the tube.  However, this machine is not exactly portable.  Thus, what to do during the day especially when the heat is on, making the air even dryer?  We tried a room humidifier but it is not nearly as effective as the night humidifier.  Enter the "Swedish nose", also known as an "artificial nose."  (Don't ask about the origin of the name--guess the Swedes must have invented it.) 

The Swedish nose is a small, self-contained device that attaches to the end of the tracheostomy tube.  When Ernie exhales, the Swedish nose retains the heat and moisture and uses it to warm and humidify his breath when he inhales. Unfortunately, he can't wear his speaking valve when he wears the artificial nose but it is great when he is working in his office or sitting in the den reading. 

The call to the manufacturer ensued when the box of noses was delivered with no instruction.  We did not know how the humidification worked.  Were we to soak them in water first (they have little filters on the side)?  Our local ENT nurse had never heard of them.  The manufacturer was great--told us they were ready to use out of the box and explained the mechanism.  We will have to see what the otolaryngologist thinks of this when Ernie has his follow-up on Monday. 

Relaxing the Rules

Today we had the first of five home health visits designed to help us learn how to care for Ernie's new equipment.  We weren't sure what to expect but got a very pleasant surprise.  According to the home health care nurse, the protocols we learned in the hospital are to insure a "sterile" environment.  This involves gallons of bleach, saline solution, distilled water and boiled water, tons of cotton swabs and gauze and countless pairs of sterile gloves.  The way we were going through these supplies, I was going to check into purchasing by the case. 

Luckily, the nurse explained that at home there is not a real expectation of maintaining a sterile environment.  Instead, our goal is a "safe" environment.  We still need distilled water but in many cases bottled water or even tap water is fine.  The cotton swabs and gauze have been replaced by a clean, white wash cloth and towel.  Disposable gloves are fine but so is washing your hands. 

This news was liberating.  We could not imagine how one could travel--all these supplies would require a suitcase of their own.  Also, without the need to organize all these supplies, we are saving a lot of time and effort.  All in all, a good day. 

The Silence Is Broken

What a great day.  Ernie has his voice back!!  He thinks that he doesn't have as much volume as before but the speech pathologist reminded him that he still has a lot of swelling and that he can expect some improvement. 

His only complaint--his value is purple.  Evidently, they come in different colors, including clear, but this is the only one they had in stock that was the right fit.  The purple color is the choice for hospitals so the valves can be quickly identified.  Luckily, Ernie is secure in his manhood and is not afraid to sport flashy colors.  He is supposed to cover the speaking valve with a scarf in cold weather anyway so it will not be obvious. 

Now we just have to work on eating again.  They did a swallowing study in the hospital and, due to all the trauma from surgery, he has a lot more swelling.  This makes it difficult to get even water to go down the right pipe. So, no food or drink besides water until he gets another study in a couple of weeks.  I know he is getting better because he is getting interested in food again.  However, he does not want to get aspiration pneumonia so will wait until he gets the all clear from the doctors.  Until then, the mic-key button will get a good workout. 

Released At Last

Yipppee!!  Ernie was released from Wake Forest Baptist Medical Center yesterday. The ENT docs showed up about 8 AM to remove his temporary trach tube and insert his permanent tube.  The permanent tube is smaller and designed for people who are not totally reliant on their tracheotomy to breath.  Although he does not have the Passy Muir speaking valve yet, this allows him talk a little bit--enough that we could dispensed with the notebook he was using to communicate. 

Before he could be released, his nurse--Lisa--made me pass both a practical and oral exam.  I had to give Ern his meds and food through his mic-key tube.  I also had to demonstrate that I could remove, clean, disinfect and reinsert the "inner cannula" of the trach tube. The trach tube is really composed of two tubes.  The outer cannula is never removed as it holds the tracheostomy open.  The inner cannula goes inside the outer cannula and is removed for cleaning and then locked in place.  Once I had demonstrated everything, I had to describe to her, in detail, everything I had done. I guess I did OK as we were soon on our way home.

There is a lot to learn about caring for his new "equipment".  Right now it seems to take a lot of time but I can see that by the end of the 4 to 6 week recuperation period it will be routine.   We are starting to gain confidence. We have now been home for 24 hours and have successfully completed one full cycle of treatment almost on our own (my sister was here but is now gone).  Also, Ernie's John's Hopkins doctor that we had originally chosen to do the surgery called this morning and said all the right things. 

Ernie's next step is to get his Passy Muir speaking valve, hopefully tomorrow afternoon, and master it.