Tuesday 1/5/21

No posts for the past few days ->  Lazy blog host.

Anyway, very good news.  Kelly has made an almost remarkably miraculous recovery.  All lines and tubes are out.  She is walking pretty well with a walker.  We hope that she will be discharged on Thursday.  She has to stay here in Cleveland for an outpatient appointment on next Monday.  Then, we hope to be on our way home on Tuesday, a week from today.  

1/17/21

Above is the post I wrote to let people know of Kelly's great progress.  I did everything but hit the PUBLISH button which adds it to the blog.  I'm really sorry if I made anyone worried due to lack of information.  I also thought that everyone was in on the texts but I discovered that that was not the case.  So again I'm sorry.  I didn't do a very good job with this blog seeing as how I had practice with two other serious medical blogs for Kelly; first her epidural abscess in Buenos Aires and second, her first heart and aorta surgery here in Cleveland.  Hopefully I won't have an opportunity for more practice.

Anyway, we are back here in Albuquerque thankful for the blue skies.  Kelly is doing her rehab walking around our back yard with the dogs.  She can't start more vigorous PT \ OT for another 5-6 weeks and she can't drive or sit in the front seat of the car for another 6 weeks so now it's "Driving Miss Kelly". 

Bottom line is that she will certain make a full recovery thanks in part to all of your support, kind thoughts and love.

Thanks to all, 

Love,

Kevin

Saturday January 2, 2021

Not surprisingly, it was raining.  It's always raining here.  I grew up in northern Indiana and it was bad but this seems to be at another order of magnitude.  So I decided to take the day off today to enjoy spending time with Kelly and to sleep.  

Kelly is doing great today and sounds like her old self.  She remains pretty weak and her fine muscle control sucks - but both are a world better than yesterday.  She tried to look at things on her cell phone but kept dropping it on her chest incision - ouch - until she put a pillow over her chest.  

She'll probably be in the ICU for two more days because she has a spinal drain in.  I don't think she needs it but they see that she has gotten better and so want to keep it a while longer.

That's all for tonight.

Friday 1/1/21

 Good news.  Sorry that I haven't added anything for a while but I really didn't know anything.  I couldn't see her until visiting hours which start at 11:00 AM here.  They took her breathing tube out a little while ago.  She is able to move all 4 extremities but she is still very weak - barely against gravity.  Her right arm and hand are just barely movable.  She is able to talk a word or so but doesn't want to.  I'm sure her throat is very sore.  She knows who and where she is but not quite the date or month.  Of course I didn't even realize that it was NYE until I got home last night.  No bangs, booms or fireworks here that I could tell of.  She is very uncomfortable in her body which is common with people who haven't had oxygen to the brain for a while.  That will go away in a day or so.  What she needs most is sleep - of course in the ICU that is one thing you don't get with hourly neuro checks.  Hopefully tomorrow she will be able to sit in a chair and if she does OK with that she can move to step down where she can get some PT.  She will need that for a while and it will likely delay our return to Albuquerque - don't know yet.  I hope you can follow this stream of consciousness - I am happier than yesterday when I was truly miserable.  Thanks to all.

Thursday 12/31

 Hi all,

I'm not quite sure what to say because things are mostly unknown right now.  Things are not going as well as I had hoped.  She is waking up but not moving her extremities as well as she should be.  She is down getting multiple MRIs right now which may help tell what is causing this but not likely to tell what can be done about it.  She was moving her legs and left arm when I left her as she went down for MRIs.  It wasn't clear if she was always doing this on command.  She definitely recognized me but is still intubated and so it's hard to say how clear she is.  The next 24 hours will tell a lot about how this ends up.  I don't know when I'll have anything new to report but will let you all know.

Major Surgery Day

 Kelly went to surgery this morning.  She slept pretty well last night.  Her major concern this morning was how scared our dogs will be with all the New Years fireworks and gunshots in Albuquerque.  

Her vascular surgeon is Dr. Bakeen

About Dr. Faisal Bakaeen, Heart Surgeon

Hello! My name is Dr. Faisal Bakaeen and I am a cardiac surgeon having graduated from Cambridge University School of Medicine in 1994. To date, I have performed approximately 2,500 cardiac surgeries, of which over 750 involved heart valve procedures. I regularly perform surgery at Cleveland Clinic.

I believe my greatest strength is that I believe being a heart surgeon is a tremendous privilege. Surgery can often give patients the best chance of a cure and add valuable years to their lives. Excellence in patient care and outcomes drive our success.

I received a text that the initial incision was at 9:39 Eastern Time.

12:03 -  The major portion of the surgery is underway.

3:45 - The surgery is done.  I just got done talking with the surgeon.  He says that everything went well.  Several of the things that he was afraid might happen didn't.  He says that everything that they can measure with her looks good.  It won't be until later, after she wakes up, that they can measure her brain function which is what she was most afraid of.  She was under induces cardiac arrest for around 20 minutes which I think is about expected.

I'll be able to see her for 10 minutes or so later this evening.  She'll still be intubated and out of it but it will be wonderful to see her face.  I was about to puke the last couple of hours. 

Love you all and more sometime later.

Cleveland Clinic Part II

I meant to have this set up days ago but I had endless problems with the app and only got it ready on Tuesday night.  This should give those of you who aren't aware of what's going on a little background.  You can continue to text or email but even better if you add a comment to this post.  Thanks for all your support.  

Well, we are back in Cleveland for more surgery.  For those of you who are not up to date, I will fill you in.  Two years ago, the last time we were here, Kelly had an operation for cardiomyopathy on her heart to make the heart muscle smaller.  She also had her aneurysmal (swollen) ascending aorta (the part that comes right out of the heart) replaced with a Dacron graft.  All went very well and we were both impressed with how together this place is.  After we got home she had rehab and did great until the fall of 2018 when she had a dissecting thoracic/abdominal aortic aneurysm that was repaired in Albuquerque with three stents.  Again she did well but follow up on that a year later showed that the lower stent was leaking.  We have been following that leaking stent every 6 months.  The last CT unexpectedly showed that her aortic arch was aneurysmal.  So we are here again to have that fixed.  Unfortunately, you can’t plan this stuff.  Things happen when they will happen.

All her initial workup, labs, COVID, cath., & etc was all negative or unremarkable.  She has been otherwise great.  She walks 3-5 miles a day and we bike ~20 miles a week.  Today, Monday,  she is having a carotid bypass so that her brain and arm can get blood while her heart is stopped.  She is in surgery as I write this. 

On Wednesday, she will have the big operation.  They will cool her down, stop her heart and then replace the arch.  It's pretty scary shit that no surgeon in New Mexico would touch.  It's reassuring to have a surgeon who states, "I do this all the time."

We are staying in room 728 at:

Residence Inn Cleveland University Circle/Medical Center                                         1914 East 101st Street                                                                                               Cleveland, Ohio 44106 US

New Shiny Heart

Kelly had a couple of things that kept her in the hospital. She had three chest tubes connected to clunky canisters that we had to drag around on a walker.  Her Sodium was low.  She had extra fluid and air around her lungs.  Yesterday, miraculously, all those things pretty much disappeared.  Chest tubes came out.  Sodium was OK. Fluid and air around lungs were OK.  She had an echocardiogram that showed absolutely perfect/normal parameters which is not at all what she had when she came in.  I'm amazed that they can change the structure of the heart to make it function as it should.  So, bottom line, they said, "Get out of here."  And we did.  We're now sitting comfortably in the Holiday Inn - (which if I never have to spend another night in a Holiday Inn it is too soon - but glad it's here.)

And then there's Cleveland.  Around 1900 it was one of the most prosperous cities in the world.  In 1949 the population was 916,000 people.  Today,  the population is 375,000.  The back streets are almost gravel/dirt/mud.  I am sure the major industry is medicine.  I guess there is insurance here as well.  Cleveland Clinic is enormous - there is a huge building for every organ in the body.  The cardiac surgery alone is 9 stories with I don't remember how many ICUs.

I  went to two concerts at Severance Hall, one of the great concert hall in the world.

Severance Hall is a little over a mile away. The first concert was a Brahms violin concerto which was so romantic but perfect for a big victorian concert hall. Then, I went with my bil, Terry,  to a concert of Beethoven's third, 'Eroica', - so cool to hear a concert like this performed by one of the great orchestras in the world. in the morning, with lots of Ohio kids who were spellbound, I guess, and quiet.
  
I went the Cleveland Art Museum which was also about a mile away and totally free - come and go as you wish.  A legacy from when  Cleveland was one of the most properous cities on the planet.

Today, Kelly felt well enough to go out and so we went to the museum together.

Kelly clearing our table at the museum cafe.

It's a spectacular museum ,and it's free, and there's a free shuttle from our hotel.  It was so nice to be getting back to pretty normal things.

Saturday morning we fly out of Cleveland and back home to Albuquerque.  The weather has been so cold and nasty here that all kinds of people are asking us about what it's like to live there - They especially want to know about the weather.  One interesting thing the clinic concierge told us is to not tell any of the airline personnel what kind of procedure she had because their policy is to wait 10 weeks prior to flying.  CC says that they fly lots of people out days after open heart surgery with no problems.  So, fly we shall. 

Thanks for all your support.  See you soon

POD 1

So, post op day one.  I stayed late last night and she was still intubated.  She had some persistent chest tube drainage that was getting in the way of extubating her.  I just called and the chest tube drainage has dropped off.  Now she is on a CPAP (continuous positive airway pressure) trial and assuming that she does well with that (she will), they will extubate her in the next hour or so.  I'm going to grab some breakfast and head over there.

The Arcade in downtown Cleveland ca 1898. 
The original shopping mall. 
Now sadly, it's  pretty much empty

11:00 pm EST -  Very good day.  Kelly sat up for about 5 hours today.  She is very alert - not much different from her usual self - a little drowsy anesthetic overlay but not much.  Believe me, if you didn't know that she had just had extremely complicated, major heart surgery, you would never know.  Very little pain.  There are a few tubes that need to come out prior to leaving the ICU but that will all happen soon.  Then Step Down. This means a step down care level from ICU - it's good  - a few thought that this was demeaning but believe me, this is good.  A few days in step down and an outpatient follow up and we will be ready to go back home.  I don't anticipate further problems from here on and so do not know how much more I will post.  A story without drama and conflict is boring but right now, a boring story with lack of drama and conflict is just fine with me.

One thing Kelly asked me to add was a description of some of the surgery that I had gleaned from the surgeon.  Per Wierup is his name and he's from Sweden.   He is very soft spoken but extremely confident, "I am one of four surgeons in this country who can do this operation", "This needs to be done fast.  I am fast."  I know to some of you this won't make much sense due to the  jargon but this is part of what he explained to me about the operation.

The surgeon replaced 10cm length of her ascending aorta with a 2cm length dacron graft by pulling down on the ascending aorta from the innominate artery, sewing to the graft and then sewing back to the heart.  ("We can't prove that this is better but we think it is.")  He was worried that we would see subsequent CTs and only see 2cm instead of the 10cm he cut off - as if we were paying by the cm.  He did some more stuff including cutting muscle away from her interventricular septum.  But what blew me away is that he repositioned the mitral valve by moving two papillary muscles, little muscles about the size of your little fingertip, that work the mitral valve, along with their attendant chordae tendineae, strings that go from the papillary muscles to the cusps of the valve leaflets.   "I moved this one from here to here and this other one from here to here."  He explained it very clearly almost like a carpenter explaining how he moved a door from this part of a wall to this other part.

Sleep well.

Surgery Act Two

They just took her up to the OR.  First she will see anesthesia to have the necessary IV lines placed so I would guess that surgery will start around 12:15 - 12:30 EST.  We are supposed to get an update about half way through the surgery, maybe 3:00 - 4:00 and will post more at that time.  She has remained incredibly positive and we expect good results.

Kelly, her niece, Cindy and beau, Gabriel, who visited this past Sat.

   More later.

3:30 - We had an update from the nurse case manager.  Major portion of the surgery underway at 2:50.  It will be several more hours before our next update and will post again at that time.  We're hanging in here.  Thanks so much to Kathy and Pat for being here with me and all the rest of you who are with us in spirit.

5:00 - All good news.  The surgery is over.  No complications.  Surgeon is happy with the results.  No transfusion was needed.  We will be able to see her in 2 hours or so in the ICU.  The sun is even shining in Cleveland.

9:00 - We got to see Kelly in the ICU.  She's doing OK but she still has the breathing tube, 4 chest tubes and a bunch venous and arterial lines and is all strapped down.  She is not really strapped down but she has so many tubes she can't move around.  She opened her eyes a few times and I think she recognized me.  I told her specifically that her father told her he loved her.  Asked multiple times by me and her nurse, Theresa, if she was in pain, she shook her head no.  It's so rewarding to see all the positive comments and texts.  Kelly eats that stuff up and will love to read it when  she is able.

They hope to extubate her later tonight which will be the first step towards her full recovery.

Kathy, Pat and I will meet in the morning to visit some more with her.  It was so nerve wracking waiting today that we all need some sleep.  Terry, my bil, will be here sometime tomorrow afternoon which is the best.

I realized that today is the first time that I can think about the future.  Before today, everything good or bad ended 4/10/18.  Now, hopefully, we will work our way back to a better normality.

12:45 am - just got back from seeing her.  Still on the vent but I talked to RT (respiratory therapy)  They hope to extubate her by 6am.  I hope so too. 

Prepping For Surgery Part II

Monday, 9 April, and we are once again in the day before surgery. How are you all doing? Holding up ok? I don't need to ask if you are still with me as I am pretty sure the answer is yes. How am I doing? Not too bad. Sure, I wish it was over, but I have had a lovely couple of days and jeez o but I am just racking up experiences and learning a bunch of new stuff. Always a good day when learning happens don't you think? I understand a lot more about IgG, IgM, and that pesky IgA. Include on the learning list more immunology and those transfusion medicine folks that work somewhere in the hospital background with their (seemingly?) floating tolerance numbers. I really enjoyed discussions with the Immunologist. She is great. So lots of learning on my part AND I have been able to teach some as well. Students, nurses, cardiology residents all love listening to my heart. Probably they really like the singing that goes on in there so I shall think of it as the song my heart sings and that they like the piece quite a bit. Yup. I can live in whatever reality I wish to right now. Yes indeed!

Cleveland Clinic hospital staff has been just terrific. Everyone is so supportive and most positive. They really help keep me grounded in the best of ways. After I get out of the ICU (2-3 days) they offer all sorts of relaxation, stress reducing alternate medicines stuff. A partial list includes massage, reiki, reflexology, acupressure, aromatherapy, art and music therapy, guided imagery, and more. I say sign me up for all of it! It's not as if I will have a full schedule of stuff to do. And of course they really encourage you to get up and walk.

10th Floor Pavilion

There is a pavilion on the 10th floor with an outside deck. The view of Cleveland, Lake Erie, and surrounding area is terrific. We brought the binoculars so lots of peering around shall be going on up there. I can bring my book, computer, writing stuff up there and camp out the whole day if I want. Well, that part of the day when I am not doing massage and such. Wow! I am going to be busy! She says as she works to ignore the massive pain coming her way. But that is going to be ok. Our friend mb says that when chaos and crisis surround you take the long view, look at the desired end result. It's like avoiding being seasick on a boat. Look at the horizon and you don't get sick. I am looking at the horizon. And I am not throwing up.

Love to each one of you,
Kelly/Ann Cecelia

Surgery day

So, Kelly just went back to surgery prep.  I am here waiting with Kathy and Pat.  We will have a short time to see her after prep before she is taken to the OR.  The say that they will give us updates through the surgery.  Until then, waiting.  More later.

The flowers - Kelly and MB

10:30 they took Kelly to the OR.  Surgery should start soon.

Disappointing news.  Surgery was cancelled for today due to a low IGA level that can be associated with reactions to blood transfusions which  may be needed.  Anyway, she will be admitted to cardiology they will work on that over the weekend and if it can be resolved, surgery will be rescheduled for next Tuesday.  I will let you know when I know more.  She will be in J6-3 bed 2.

More later.

Kathy, Kelly and Pat

4:45

We spoke with the immunologist who is less concerned about the low IgA.  She thinks the surgery will be no problem she just needs washed red blood cells.  Imagine little tiny gnomes with scrub brushes and buckets of Spick and Span.  We're hoping to break her out tomorrow so she can have Sunday and Monday out of the hospital.  Then we'll start all over again on Tuesday.

 Kelly's hosp room is not bad - bad photo.  Big windows and fairly spacious.  Still, we're trying to get her out for a few days.

Thursday heart thoughts

My Dearest Friends and Family,

It is Thursday morning, cold snowy and I am loving it as I sit in my comfy chair next to the window. Burger King looks lovely. No, I do not yet have the good drugs but I am having coffee (strong!) and it is my first morning to sleep in or do whatever I want until my first appointment at 11:00. 11:00! Yay! I feel ready for whatever adventure is coming my way. And pretty happy, which is due in large part to all of you who are walking me through this with love. Your blog comments, emails, texts are in my heart and I take them wherever I go. They really help keep the scary bits away and help me focus on the positive. I will answer each of you individually but so far there has been little down time. You know I think of each of you most all the time and I do love that we share so much together. I also know, in my heart, that we will have grand times together for lots and lots of years. And far better adventures than than this Cleveland one that is for certain!

As Kevin has mentioned, Cleveland has welcomed us with a great display of versatile atmospheric excitement. Rain! Sixty mile an hour winds whipping up Lake Erie! Snow! Days are not boring that is for sure. I love that we can walk to all my tests, procedures, appointments. And I will be able to walk tomorrow morning to the the surgery. I am quite confident that all really will be well. So it will soon be time to start planing new improved adventures together. Let's start now!

Love to you all!

Kelly/Ann Cecelia 

Cardiac Cath

Kelly just finished her cardiac cath.  All is well.  No complications.  Arteries are clean.  They did her cath through an artery in her right wrist and so she can't use her right hand until tomorrow.  The cath team gave her an A+ as a patient even through she broke the rules and had coffee and yoghurt this morning before the procedure. 
No more procedures prior to Friday's surgery.  Meet with surgeon and anesthesiologist tomorrow.  No more news until then.

 

We went to the shore of Lake Erie today.  Temp in the low 30's and wind up to 60 mph.  It's hard to tell in this picture but big waves were crashing on the shore.

Flowers from Boisy.

Rainy Tuesday in Cleveland

We are here in Cleveland.  Skies were clear when we landed but have been leaden ever since.  Rained all day today.  Kelly had tests all day today - crazy schedule - 8-5.





View from the clinic.

View from our hotel room

 All is well so far.  There is something about waiting around all day in a hospital that is exhausting even though you aren't doing anything.  I read most of the time but most of my fellow waiters just sat there.

I did get tired of reading and tired of TVs on.  We made it through though.

Kathy and Pat, Kelly's sister and bil, came in today and we had dinner at the Holiday Inn Cleveland Clinic. I wouldn't recommend it but Kelly hadn't eaten all day an so found it OK. The clinic itself is pretty classy but the neighborhood is a little dodgy - not the kind of area you would want to walk around at night.  Burger King is the best restaurant nearby... UGH.  We walked to the CVS last night and were approached by a guy who asked if I was looking for something - I can't hear well and so I don't know what it was.  Kelly told him, 'No'.  Who knows!

View of Burger King

Kelly has cardiac catheterization tomorrow at 6:00 am - Ouch!  Here are the dogs channeling Kelly during all of her poking and prodding.

Not much to report today other than all her pre-op tests are fine.  Will know a little more Thursday and Friday.  

Sleep well.  

Where to start?

So, It worked pretty well last time when Ann/Kelly had surgery in Buenos Aires to do a blog and so I decided to do a new blog to keep people up to date with this surgery.  I say Ann/Kelly because her family calls her Ann but I call her Kelly and because I'm writing this, I will call her Kelly.  Just know that she is the same person and, of course, you may call her whatever name you prefer.

So again, I assume that most all of you know the basic story.  Kelly has an ascending aortic aneurysm, a swelling of the aorta as it comes out of the heart, that needs to be repaired.  She also has hypertrophic cardiomyopathy, a thickening of the interventricular septum, the muscular wall between the left and right ventricles of the heart.  This swelling interferes with blood flow and is likely the cause of her decreased exercise tolerance, the only symptom that she has really had.  The surgery will be long, about 7 hours and we won't really know much of anything new until a afterwards.

We are going to Atlanta to see kelly's family on Friday, staying over Easter weekend, then going to Cleveland on Monday.  Kelly starts her pre-surgery workup on Tuesday, 4/3.  It's basically back to back clinic visits and outpatient procedures.  She has more pre-op on Wednesday and Thursday and then surgery on Friday.  They assume five days in the hospital after surgery and then a Clinic visit three days later - but that falls on a weekend - so likely five days later.  We hope to fly home April 16 or 17th.

We are very optimistic that all will work out well.  Cleveland Clinic (CC) does more of these operations than anywhere else in the world.  Their mortality rate is incredibly low, around 1%, which includes patients who are very sick prior to the operation - Kelly is not.  Her surgeon will be Per Wierup, a guy from Sweden who trained at CC - https://my.clevelandclinic.org/staff/22492-per-wierup
Anyway, I will try to keep this up to date.  I am happy for anyone to add whatever as a comment. Let me know if there is any problem opening the blog or any errors.  I will send the link to this blog to the sibs and friends and ask that they share it with their children and anyone else who they feel might be interested.

Here is Kelly's latest letter:

Dear Family,

Here is what my schedule has looked like for the last year and a half: get up  whenever it feels right in the morning. Eat. Walk. Putz around and maybe do some other stuff. Eat. Read. Go to sleep when I am sleepy. A perfectly reasonable schedule I think.

I just read the packet info from Cleveland Clinic. Here is their idea of a schedule. Tuesday April 3 Start testing at 8:00am. EKGs, MRIs, CT scans, ECHOS, office visits etc. etc. etc. Last test start at 4:00. No food until the end of the day - wait, I must have read that wrong I think. Wednesday heart catheterization (time to be determined). Thursday all day meetings with surgical team, admitting, etc starting at 8:00. They say plan to be there all day and bring a snack. Snack?!! I want a big prime rib steak with all the trimmings after thinking about all this. Friday April 6 surgery, time not yet available but probably early. And probably I cannot eat.

My schedule was WAY better.

We are mostly packed. My bag has lots of socks to go with my hospital gowns. I will be warmly styling. Plane leaves at 6:00 am tomorrow morning. Stupid time. We go to Atlanta to see the Sullivan side of my family.

Sending much love and more later,
Kelly