Day 4: Exit Negotiations

 

She got a great sleep last night, probably 8 hrs, which is amazing.  As you can see she is up and ready to go.  We just took a nice long walk and got off the floor and were standing at the elevators - that was freedom at the press of a button.  Almost too easy to escape.  But we have some key items to negotiate over to make a clean/medically-legal escape.

The complicating factor is a blood thinner, Coumadin, she is on which sort of helps preserve and protect the the leaflets of her new valve.  Think of it as that paint protect-ant option they try to sell you on when you buy a new car - only, this one you have to take.  Coumadin is not a casual med., and needs to be monitored, so when they like to keep you in the hospital until the levels stabilize.  This is way worse than being in the hospital when in active recovery mode (during recover you have work to do), when waiting on Coumadin levels to stabilize you have nothing to do.  Hence, why I am in full on negotiating mode to see if we could get levels checked today, and then maybe at NVRH at home tomorrow.  Let's get creative people, COVID is in session, we are hogging a much needed bed from other cardiac patients, and we all got business and school to get back to.  Plus room and board here for Sarah and us is not cheap.

Still in negotiations... I worked over the surgical NP pretty hard with my case, and she is biting at the line a bit.  She did offer, even if later today, that would work.  Sarah and I both in stereo say YES!!  Judi is getting sick of my lobbying thinking it is just rude and over-stepping my bounds.  Hey, I'm a Leo and my cub wants to be home with her favorite little cub sister Molly!  This is all still way up in the air, and for sanity sake we need to assume we will still be here for the night. 😒

More to come later...

Day 3: On the Floor

So last night Sarah got moved on to the Floor out of ICU.  She is in a double which for privacy is not great, but her roomy is a 32 yr old girl, so that is good - not a 2 or 3 year old!  Last night was my assigned sleep night, so I got to go to the hotel and slept like a rock - so much better this morning!  Judi and Sarah fared well, but not a ton of sleep. 

This morning Sarah started eating a bit more and drinking more, all good stuff.  The big tasks today are:  #1.  Get up and walking (in general this is good, but specifically to get more drainage out the chest tube), and #2.  Get the chest tubes out (need #1 complete to do a #2).  And more #1s and #2s are always a bonus!

Just went for a nice pretty long walk and not much drainage out of the tubes, so that bodes well for getting the tubes out soon.  She is sitting up now, feeling pretty good, just eating and drinking:

Got the chest tubes and pacing wires out at about 12:45 today.  It went smooth, however Judi conveniently excused herself from the room when the surgical team came in to do their dirty work.  So I got to stay for the experience.  Sarah did great, she was pretty scared even with the drugs they gave her, but she didn't even cry.  They pull both tubes out simultaneously and there is about a foot of tubing in her chest cavity.  Cleaning crew had to come in after as the blood spatter tends to get on the floors, walls, etc.  Sorry if TMI, but Sarah wants this gory details documented - I will spare the pics.  Take that back... at her request, she wanted the pic as my description did not do it justice (please cover your children's eyes!):

Few seconds after chest tube removal.  2 terrible tubes on left.

After that ordered some lunch - chick tenders and mac-cheez.  She ate a decent amount, not a ton, but enough.  Then we went for a walk around the floor, at a pretty decent pace too.  Feeling much better sans tubes/wires.  She is napping now - much needed after a VERY busy first half of the day.

Next up:  chest x-ray, lab work, sleep.

More to come later...

Day 2: ICU and Moving

Sarah and I both had a long and fairly sleepless night (Judi got to get some sleep for the team in the hotel, no reason for all of us to be haggard) - lots of IVs being pulled, chest x-rays, etc.  Couple that with all the alarms and beeps that go off periodically on her ICU command central.  Just when you are drifting off... BEEP, BEEP, BEEP, BEEP... Good lord!  I can't complain, a couple sleepless nights are nothing compared to her journey.

We sort of officially got up at 530ish and the nurses got her sitting up and walking to the bathroom.  These were two big steps needed to get out of ICU.  Then she had a few bouts of nausea, which is normal, so they are working to get that under control, which looks like they have.  Waiting to hear on room availability on the Floor so we can get out of here.  More to come soon...

Sounds like we will stay the rest of today and tonight in the ICU.  Not because she is progressing a little slower, which she had slowed a bit, but because there are not beds open on the floor.  Some people should be leaving today.  Not so bad, ICU rooms are big and private with its own bathroom.

Sarah wanted to educate you all on the terrible chest tubes.  This is not to scare anyone facing this surgery, but they are the least fun part.  During the surgey they insert 1 or 2 drainage tubes to evacuate resibual blood around the heart lung area.  They stay in for the first 2-3 days until the drainage ceases.  They are not small tubes either and require a stitch or two to close the holes when they get pulled out.  The 'pull out' procedure is the part that is not fun (see previous blog posts).  In the past she has only had one tube, which was bad enough.  When she was in her loopy, high state late last night she started probing around her body to inventory tubes, IVs, catheters to make sure the nurses we on the ball.  "Hey... (reaching between her legs), no catheter, that is pretty good!  Hey.. WHAT??  dad... why are there 2 chest tubes, awww SHIT man..."  Think of her saying all that in a classic stoner voice.  It was hilarious (other than the 2 chest tubes).  She needed 2 basically because she is a bigger body.  ANYWAY, she wanted to share on the blog a pic of not only the 2 chest tubes but the pacing wires that are also implanted within her and will be fished out later too.  Enjoy (see below)!

Chest tubes and pacing wires.

Day 1: Surgery

 Seemed like a big deja-vu from the last time 6.5 years ago.  Everything was sort of the same (minus the masks).  Same meeting time, same place, same pre-op room, same parent waiting area, same complimentary drinks/snacks.  Just seemed like a routine, less emotional too - it was just need to get through this day.

It went smoothly.  She was in the OR from 715am to about 330pm, and the new valve went in without a hitch.  Judi got to chat with Dr. Emani briefly, but I missed him because I stepped away to get a snack.  The meeting was quick because there was not much to say really, it went very well.

They got Sarah moved up into the ICU around 3:45pm and we were able to see her at 4:15pm.  It is tough seeing them right out of surgery with all the stuff hooked up and her breathing tubes in.  They kept her under until 830pm, so that is the time to get out and get off campus for some dinner.  We hit up Tasty Burger near Fenway which hit the spot.

Back in the ICU at 730pm and just waiting until all her vitals indicate it is time for her to start breathing on her own and wake her up.  This got pushed a little later until about 9pm, and she slowly started to wake up.  At this point it is a fine balance of power struggle between the ventilator and her lungs.  Lungs slowly pick up the slack and the ventilator slows down.  After about 10 mins the nurses get the tube out, some coughing and struggle and then it is done.  She did great - might be due to her experience.

After that she was loopy due to some pain meds they had to give her as her incision was hurting.  She was basically acting like those kids in the videos who had their wisdom teeth out.  Then she started snap-chatting pics of her self in the ICU to her friends and saying weird stuff.  We had to take her phone away.  Note to self, do not let your drugged child (or adult child) use their phone when still loopy.

I am dead tired and am staying with her in the ICU, and almost no sleep last night.  I need to try to lay down while it is quiet in here.  More to come later.

Thanks all for the prayers and well wishes - it all worked!

Here We Go Again, And Again...

Well, I made it about six and a half years not having to post to this damn blog...  This is the type of blog that the less you have to post, the better life is.  Just a refresher to catch you up.  Sarah is now almost 19 years old, a thriving freshman at St. Michael's College, majoring in Mathematics and Computer Science, made the Dean's List Fall semester during a COVID outbreak, avid skier and ski racer, and all around pretty decent kid.

She has had 2 previous aortic valve repair/replacement surgeries at ages 10 and 12 (see previous blog posts for the details).  At age 12, she got a bioprosthetic replacement valve - this was spec'd to be good for 7-10 years.  For various reason, her's fell a little short at 6.5 years, but she worked that valve hard putting it through adolescence, growth and an athletic lifestyle.  These valves just wear out like brakes or tires on your car.  How does one know it is failing?  Annual cardio check ups and ultimately symptoms (chest pain, shortness of breath during activity).  Last March her check up indicated maybe 2 more years life on the valve.  But then recently (early January) while skiing she was experiencing shortness of breath and deep chest pain.  She finally came to me and said dad, please call Boston, my heart is giving me problems.  So I did, and they arranged for us to go to UVM (shorter drive) to get a quick echo/ekg to see how it looked.  In short, it looked bad and the stenosis was in the 'severe' category.  That means lets get this fixed on the sooner side of later.

After many talks and consultations with her surgeon Dr. Emani and her cardiologist Dr. Brown, we came up with 2 options that would be suitable for this fix.  The goal is to minimize open heart surgeries - they just are not good to do on a regular basis.  There is also a fairly new procedure called trans-catheter aortic valve replacement (or TAVR, less invasive, catheter through an artery in the groin - way better than open heart).  This is not an ideal option now, but will be in the future.  Right now we considered 2 procedures:  1.  new bioprostheic valve called Resillia (maybe 10-12 years she could get), or 2.  The Ross procedure (bit more involved, grab her good pulmonary valve and pop it in the aortic position, and then put a homo-graft cadaver valve in her pulmonary position).  This has very promising long results on the aortic side, but is more upfront risk, 13 hr vs 8 hr procedure, potential pace maker needs, etc...  But she could get 20-30 years on the aortic side.  In general, it is a bit more Frankensteining than we like, and slightly higher risk.  Sarah (and us) was more comfortable with just getting the new Resillia valve and knowing that in 10-12 yrs that will need to be replaced, but can be via TAVR at that point (1 day in the hospital).  Most of the docs we spoke to put Ross as their #1, but that is likely just due to the longevity of the results IF all goes as planned.  We are taking the lower risk, higher predictable solution.  Literally made the final plan with Dr. Emani today on a Zoom call from our stay-cation condo at Burke Mountain this a.m.

So, we are here, as ready as you ever can be, COVID tested and well fed.  Sarah is a real trooper, almost stoic about the whole ordeal.  Imagine having to undergo 3 open-heart surgeries within an nine year period.  This a lot for an innocent (other than her goddam potty mouth) teenage girl.  On the upside we are in the most capable hands in the world (thank you Dr. Emani, Dr. Brown, and others!!) - we are blessed by that!  And a HUGE shout out to our unbelievable greater Danville/NEK people who have been bending over backwards to support Sarah, and Katie and Molly while we are gone.  You guys know who you are and we are humbled to be surrounded by so much love and selfless giving.  Seeing some early reports on the food deliveries for Katie and Molly, I dare say they may put on a little weight this week - they need it!!

Thanks to everyone for their prayers, well wishes and support.  I will do my best to keep you updated as we get updates through the day tomorrow.  Get real-time updates on Twitter @pmcalenney (https://twitter.com/pmcalenney).  Blog updates as I have time, hoping at least once a day.  So long for now, time to get my man pants on - big week starting now!

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!!