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!