6-Weeks Post Surgery

It has been a while since we left the hospital and my last post.  Guess an update is due...

Back to It!

Sarah has been doing great - she recovered so fast this time around, and was back at school for a few half days, a week after the surgery!  She was home one full day after the weekend, saying it was boring sitting home all day!  So, she went back for a few half days and then full-time (just P.E. and backpack restrictions).  She got back into the swing of things, and caught up on her missed work pretty quick.  Then it was just a matter of keeping her at bay and not climbing trees, riding bikes, wrestling with her sisters, etc...  I guess a good problem to have.

Back to Boston for 6-Week Check

Today, as planned, Sarah (and Judi), headed back down to Boston to get an echo, EKG and chest x-ray and meet with the doc.  Dr. Lang was away so we had to meet with Dr. Esch which was just fine.  From what Judi reported, sounds like all is good with her new valve, but her left ventricle (LV) is still not back where they want to see it (in terms of reduced size and strength).  This is not anything to be too worried about, as this could take several months post-op.  However, all restrictions are lifted with the exception of bench-pressing and push-ups - think  we are OK there - she never was a big bench-presser girl!  But, as you know, once you tell a kid they can't do something, that's when I will walk in the basement and see her pushing iron toward the ceiling.  She can ride her bike, climb trees, swim, play soccer, all the things she's been missing out on.  And, to her chagrin, she gets to participate in P.E. again (yeah!) at school.

So, we will head back down again to Boston in December (mid to late) to get run through the paces again.  Let's hope and pray her LV decides to cooperate and get back to the shape/strength that the docs want to see.  We'll be working on that!!

Sarah browsing the 6's at an Apple store somewhere not in VT,
after her 6-week visit at BCH.

WE'RE GOING HOME!!!

NEED I SAY MORE!!!

Ready to get outta this place!

Sarah gets outside finally!!

Day 3: Hot and Cold

Well, I don't know about Sarah or Judi, but I slept like a rock last night in the hotel.  One of those sleeps where you don't move for 9hrs straight - man, I needed that.  Let's get this day on the road.  Time to check in at room 830 with Sarah and Mom!

They, however, did not sleep all that great.  Sarah was still off schedule having slept for 13hrs during the day for the surgery, so was awake most the night, which meant Judi was too - no thanks to the cot from hell!

We got some breakfast and just hung around for a bit.  Sarah was pale looking and did not have much energy.  This is the typical 'Day 3', where your body just wants to heal and not do much else.  So Dr. Lang said let her do it.  We also were having some troubles managing pain as Sarah was not letting us know when the pain was getting above, say 2, on the 1-10 scale.  She'd be moaning and wincing, all of the sudden, and she would say the pain is a 5 - uhg!  This makes it harder to get the pain under control, when you let it go unannounced to long.  So she got some stronger 'oxy-stuff', which helped her relax and really got her in a better mood and more mobile.

So, after lunchtime, she was feeling really pretty good.  We took a few short walks, she ate some apples and peanut butter, and some popcorn - so things were looking up.  They also pulled her pacing wire (not so fun, but nothing like the tube), and her last IV from her hand which really stopped working anyway.  So that boosted her mood, getting the last 2 internal attachments removed.

I went for a walk to see the new location of the gift shop and the CVS since all the construction.  This is a great hospital, but it is really a mess - no offense BCH, but glad we

Working on her lego fire truck!

don't judge a book by its cover.  You walk in this place, and it just is not the look of a place where you would want to spend a week and have major surgery.  But the internal components (staff, surgeons, docs, nurses are magical!).  Anyway, since all the construction, stuff has gotten shifted around.  I found the new gift shop and took a look. They actually had a decent legos selection, and Sarah loves legos.  So I got her a lego fire truck, and brought it up to her.  That made her day - so she spent the next hour or so building that, which was great to pass some time.

By 5pm, she was tired and in a bit of pain again.  She was going to try to stay awake until 8pm to get back on a regular sleep schedule.  This plan did not work, shortly before 6pm she was out.  Was not feeling great, bit more pain, and was tired, so we let her go.  Unfortunately, by 8pm she was wide awake and in a bit of pain.  She we got her pills and tried to wind down for sleep - I was exhausted.  Judi left for the hotel to get her sleep and we closed down for the night.  What a view from our windows at night...

Sarah watching a movie and a view of the city.

Day 2 - ICU and Floor - 2014

ICU

We woke up still in the ICU which was the plan, hopefully be out in the afternoon.  Sarah was feeling pretty good, and had some decent sleep.  Judi came back from the hotel around 8 a.m., and she got some sleep which is good, I did not get too much on the ICU padded bench/bed thing.

Dr. Emani 'blessing' Sarah for a great recovery before he
goes to work on another patient.

I left to go to the hotel to get showered and changed, so took my morning mile walk to the Marriott up on Beacon.  Good walk, but a bit far.  When I got back they had Sarah out of the bed, in a chair - wow...  4 of her 5 IVs were out and she was in a chair sitting up!  What you can miss if you step away for an hour.  They got her working this morning and think they will pull the dreaded chest tube before we leave ICU - this is good, as ICU can be more liberal with their meds to help make the chest tube removal a bit less painful - still gonna hurt.  Dr. Emani stopped by to check on her before his morning surgery and thought all looked great.

Soon they determined that it would be a good time to remove the chest tube.  I started to sweat and become that bully parent that is demanding they pump Sarah with whatever meds she needs so she does not need to endure the barbaric procedure.  They try to talk some sense into me, that it just hurts, and they can give her some additional morphine and sedative to help, but, suck it up dad... your kid is going to have some pain, but will be short lived.

They got Sarah some more meds and came in to do the procedure.  It is not fun to watch, none-the-less be the poor kid on the receiving end (can only imagine).  I contemplated just leaving since I was not feeling up for it, but I wanted to be there for her.  Judi stood by her, and me behind the bed.  After so little sleep and the emotions and stress of such a surgery, you can't take seeing any more pain to your child - I was not dealing with this very well.  Minutes later, they we basically done, it was out, Sarah was in a lot of pain, but was OK.  Few quick stitches, and she was chest tube free!!  She cracked a little smile through her tears, and I cried a bit too...  I was happy, mad, sad, everything, but it was over, PHEW!!

That was the biggest hurdle to getting out of ICU, and we got our orders to move to the Floor!  Word is there are 11 new private rooms and most the original rooms are privates too - cross our fingers we get a private!!

Move to the Floor

At around 2pm we got shipped out of ICU to the floor.  This was exciting and Sarah seemed upbeat about getting out of ICU.  We got to our room, 830, and it was a private (yes!) room on the corner of the building with two big windows overlooking the city (on the 8th floor).  We all just felt so relaxed getting in here a, and Sarah was much happier.  Things were moving along pretty quickly, so that made us all feel good.

Sarah in her new private room sipping a yogurt drink, smiling...

Sarah's view of Boston - not too bad!

The day wrapped up with just some rest, pain management, and a little walk around the floor hallway.  This was great for her to get accomplished.  We just read, talked, and tried to relax - not much else to do.  I would leave at night to head to the hotel and get some sleep, and Judi stayed with Sarah over the night.

Surgery Day - 2014

The Surgery

Today was surgery day, and it began at 7 a.m. to check it at the surgical area.  From there we were walked down to the surgical prep area where we would meet the anesthesia team and some nurses.  Here they prepped her, got her in bed, and took vitals.  Then after a little wait, they got her some magic juice to drink to make her not care so much about what was going on.  At about 8:40 they wheel her away and we kissed her goodbye.

That is a very difficult thing to do, especially the second time.  It is all in the hands of the surgical team now.  Dr. Emani made some time to meet with us while they were prepping Sarah in the OR - we had not met with him since he was travelling the day before.  We caught up quickly, confirmed the plan, and he was off.  Now we had time to kill on the floor 3 surgical waiting area.

We had to check out of the Inn at Longwood and check in at the Marriott, but needed to find a good time when we would not have many updates from the nurses.  After they made the incision at 10:00, I made the decision to bolt back to the Inn, get our luggage, and get a cab to take me down to the Marriott.  I managed to check in and get a 3rd night (Thursday night) so we would be covered in the event the Inn does not get a cancellation for Thurs.  It is a healthy mile walk back to BCH, but will be nice to stretch the legs out.

The surgery went well - we got our personal update from Dr. Emani at about 1:20 and he told us the new valve is in, working great and they will be closing her up.  Should be an hour until they are done with that and move her to the ICU.  He said the reason her repaired valve had failed, was due to calcification (build up of calcium) of the valve leaflets.  This can be a body's weapon to defend against foreign material.  Her valve was augmented with some pericardium tissue (heart sac tissue), and likely over time the body just decided it did not want that there, and calcified them.  The prosthetic valve he put in is treated with anti-calcification material, which will 'hopefully' decrease the chances of this happening - but this is what we need to keep praying for!

ICU

At 3:15 we were sent up to the ICU waiting room.  Would still be an hour until we get to see her.  That went by quick, and finally got to see her in a private ICU room.  She really looked the same as last time (sorry, no pics, as she would probably not be happy if i posted one!!).  But she was doing great and they expect to wake her up around 9pm and extubate (remove the breathing tube) shortly after that.  So we just visited with her, touched her, kissed her, and waited.  

Judi and I slipped out for a quick bite to eat, but there was a Red Sox game about to start so, our usual - Tasty Burger - was mobbed.  We walked a few blocks closer to BCH (and away from Fennway) and found a Mexican place and each got a burrito.  Woofed those down and hurried back to the ICU.

Sarah was still out for a while and they began weening her from the sedatives around 10pm.  She would wake up for a few seconds, breathe a breath on her own, and then sleep and let the machine do the breathing.  Slowly she took on more of the breathing herself, and by around 11pm, she we breathing and ready to get extubated.  Right before getting set to do this, Sarah was motioning with her hands and arms, sort of frantically.  I panicked trying to understand what she needed - was she in pain??!!  Then she made a concerted gesture with both hands - she was taking a picture with a camera!  What?!  Oh my gosh - she wanted a picture of her with the breathing tube in.  We all laughed and she cracked a half-hearted smile with her eyes half open.  I, of course, obliged and snapped a few for the record book.  Only Sarah could figure out a clever way to lighten everyone mood when incapacitated!!

The extubation happened pretty fast and is a process I cannot get used to seeing her go through.  She choked and coughed, and it looks terrible, but she is breathing the whole time.  Then, it was out - we were done with the day (at about 11:06) as far as i was concerned.  I felt like I could breath again too.  

Good Night...

Sarah was great, the biggest obstacles we through.  We were all exhausted - I could barely stand, and Judi left to get a cab back to the hotel to get some good sleep.  We all decided to try to sleep.  I had my padded bench in the back of the room where I made a make-shift bed, and Sarah was already dozing off.  September 9, 2014 was in the books.  All we can do is pray we don't have another March 25th or September 9th for a LONG time to come.  Good night, Pete.

Pre-Op Day Plus Some Fun Stuff

We began the day with the usual drill of getting to Cardio Pre-Op at BCH at 7:30.  It's really just more of a pain in the butt than anything.  Gets the kids nervous, parents too, involves blood draws, x-rays, EKG, stress test, and whatever else they want to throw at you.  Lots of walking back and forth and waiting for it to be over.  Sarah was a great sport, as usual - no need going into the details, as it is not very interesting.

Navigating on the T in Boston...

We were able to get all our boxes checked off the list at pre-op before noon - that was a record.  So we had the whole afternoon to explore Boston and show Sarah it is not all hospital or such a bad place.  What to do??  Well, been a long time since we've been to the aquarium, so we decided to brave the T and head down to the water, get lunch and go to the aquarium - get our mind off stuff for a while.

After a few hops on the T, we got to the area where the aquarium is located.  Then stumbled upon Legal Seafood for some lunch.  That was great.

Petting the rays...

After a big lunch, we wandered around the Boston Aquarium looking at some amazing fish and creatures.  Sarah really loved the shark and sting ray petting tank.  The sting rays were so smooth (maybe slimy really) and the would fly up to you almost like they wanted to be pet.  We also saw Myrtle the 80-year old turlte - he was a bing lump laying at the bottom of the main circular tank.  And some anacondas too.

We headed back on the T to the hotel to rest before dinner.  Just walking from the T to BCH and our hotel you realize everything down in this area are hospitals or medical universities.  Harvard Medical School is right next to BCH, so that was cool to see all that brain-power that are the future docs for our kids.

Our future Havard Med student?

Had a fun and spicy dinner at PF Changs in the Prudential area of Boston, just a few T stops from our hotel.  Sarah love's chinese food (especially rice), so this was a great place to go.  We all ate too much and took our time getting back to the hotel to get prepped for tomorrow.  Sarah took her pre-surgery shower with special scrub sponge and was all clean and ready for bed - and so were we.  Good night, and ready for tomorrow!

Leaving Day

It is September 7th, and we will hit the road for Boston at about 2pm.  So the journey begins again.  We will be updating the blog as much as possible to keep people in the loop.

First, I wanted to thank everyone who has supported us, and all the gifts, cards and cash given to help make our week more comfortable.  Sarah was so psyched about all her cool care package items - it really put a smile on her face and will make her stay a bit easier.  Likewise, Judi and I were quite surprised by the amount of gifts in our basket - everything in there we love.  You all did WAY to much, but it is so greatly appreciated.  We are blessed to have such caring, generous, great people in our lives.  THANK YOU!!!

We plan to drive down leisurely and make the 'traditional' stop at Tilton for some outlet store shopping - Sarah's favorite activity.  Good thing I have some money to burn!!  Then on to Outback Steak House for dinner - a place that Sarah has had on her food bucket list for quite some time.  They don't have them in VT, so will hit one outside Boston.  Finally to the Inn at Longwood Medical to get a good night rest before the pre-op day gauntlet.

1 Week Out

It is once again that one week away from go time.  Just had a quick check on a lingering cough by Dr. Tanner to be sure there was nothing going on in her lungs, which would be problem for the surgery.  Key is to stay healthy between now and next Tuesday.  All checked out fine at Dr. Tanner's and we have a good clean bill of health - no issues with the cough or lungs.

We also had a great meeting today with the principal, guidance counselor, nurse and teachers to go over Sarah's absence for her surgery.  It is so refreshing to have a team of dedicated people at the school who care and are so supportive of what Sarah will have to go through.  Now, we don't have to worry about her missing school - they have a plan and we can focus on Sarah getting better.  Thanks to all those at Danville School for being in her corner (again!!) during this time - we greatly appreciate it!

Now, if we could only find a damn hotel with rooms from 9/9-9/11.  The whole city is sold out within any reasonable distance of BCH.  There are some rooms at some random B&Bs, but think we will hold out for some cancellations at the Inn at Longwood Medical (right next to the hospital) where we stayed last time.  I called one of the Floor nurses to see if they would bend and let both of us stay with Sarah since we have no hotel for 3 nights, and they said no - it is a fire code thing.  What a hassle to be having to worry about that crap.  I just don't like B&Bs that much, more of a regular hotel guy with a private bathroom.  So will likely just hold out on the Longwood Medical in hopes that people who are checking out on the 8th had a few extra days booked and cancel those.  Or, there is always wandering the halls of the hospital all night, or just adjourn to a reclined driver's seat of the trusty Honda civic in the parking garage!!  As long as Sarah has her bed and is recovering well - where I sleep is immaterial.

Aunt Beth arrives on Saturday - she will again be staying with Katie and Molly - so will be fun to see her and hang out for a night.  Then we'll hit the road - probably, similar to last time, with a few shopping stops in Tilton to get some loot at the outlets for Sarah.  I am told, sometimes shopping can ease the pain - why not!!

Picture of Sarah, sisters and cousins Luke and Paige on Luke's 10th birthday at the Great VT Corn Maze!!

Here We Go Again...

The other day I was thinking about closing this blog since I had not posted since her recovery and she had been doing so well, and we pretty much forgot about her surgery over a year and a half ago.  On Wednesday 8/27/2014 Sarah and I were taking a leisurely drive to Boston for a baseline MRI to see how her repair looked.  As I drove, I thought about how nice it has been to have it for us and Sarah to look back on.  And maybe I can create a book for her out of it - blog to book (good new business idea) - since basically there would be no new entries - the 'journey' had been complete.

Umm... hold that thought.  As our long day at BCH wrapped up, they threw in an ECHO too for good measure - Sarah was bored, tired and wanted to get outta there.  Finally Dr. Lang came in to meet with us to discuss how things looked.  And after the usual chit-chat, cursory overview, there was an exhale, and a "Well...".  That's when I just shut my eyes and knew we were not in a good place.  Something was not right and she would need another surgery.  Sarah knew too, even though the doctor and I spoke as vaguely as possible to not alarm her, but specific enough so I would know the gravity of the situation.

Sarah's repair had degraded significantly since her last check in March 2014.  They were a bit puzzled, surprised and extremely sorry.  But it is serious.  Her 'repaired' aortic valve was not functioning well at all, there is significant regurgitation and the left ventricle is 'quite large' or 'impressive' as he put it.  They asked how she was feeling, expecting her to by symptomatic - I said quite the opposite, just got back from a long hike at the Basin at Franconia Notch, and she was in the lead, taking the hard way up.  That is great, but they were surprised by the condition of her heart/valve that she felt so normal.  Tough kid.  Well, we knew it had to be soon, talking next month or so.  I could not get my head around it - felt so alone at that moment - why her again?!?!  The doctor and surgeon would be in touch with us the following day to iron out the details and come up with a plan.  We were sent on our way to enjoy our 3.5 hour drive home with heavy minds and heavy hearts.  What do we talk about on the way...

Sarah (left), Katie and Molly at the Basin at Franconia Notch.

Well we talked all about it, and it was a good talk.  I had to get myself together mentally and deal with this - I had to be strong so she could be too.  We discussed it, how it sucks, but it must be done.  Sarah was on board, what ever we have to do Dad.  "Just one thing... Remember when you promised if I even needed surgery again, they would put me 'out' before pulling the chest tube?  Uh.. Yes... Well, can you just make sure they do that - that's all I care about, the rest is fine."  The chest tube is not fun, and I promised her this - and I must keep it.  Note to self, to discuss this with Dr. Emani.  Seems like minor stuff, but it is what the kids remember and fear - so if we can make that experience a non-issue, then we did some good.  Finally after a long pause in the conversation, Sarah sighed and said, "sorry Dad I have such a bad heart..."  How do you reply to something like that...  I assured her, her heart was beautiful in many ways, and was not a bad heart, it just needed a little help - and that's what we will do!

8/28/2014
Dr. Lang called promptly around 10:00 a.m. the next morning.  He had more time to review the data, and they were even a bit more concerned.  We needed to act fast - but very good Sarah is still asymptomatic.  He looked at dates and tentatively scheduled 9/4 (so soon!!).  Ultimately after talking with Dr. Emani we settled on 9/9 for various scheduling reasons.  Still very soon.  We also came up with the valve replacement solution that we and the docs are comfortable with.  We will be using a bio-prosthetic valve (Magna-ease) which Dr. Emani has had great success with, and he hopes to get 8-10 years out of.  Hey, that is a hell of a lot better than 1.5 years.  Time is what we want, enough to let the medical field advance, in hopes that when she needs another surgery they will be using the trans-catheter procedures for aortic work.  That would mean no more open-heart surgery.  In addition, many thanks to our good family friend Dr. Todd Roth (a pediatric cardiologist), who has been at our side advising and consulting us - he helped us greatly manage through our last experience.  He concurs with all that BCH docs are recommending, and that is nice to know we have consensus.  So we are scheduled and ready to go... Lots to do before then, but for now, we will enjoy our Labor Day weekend with my brother Morgan's family - put them to work harvesting our hops.

Many thanks to all those that have reached out with thoughts, prayers and love.  That is what we need right now.  I will do my best to keep this updated as we get closer or if anything changes.  We appreciate all the support and offers to help out - we will definitely reach out if we need anything.
-Pete