OHS #2

Now that our big day yesterday is over and we've been able to get a few hours of sleep, we are feeling rested and ready to give a proper update. 

5/22/18 - Open Heart Surgery #2

Quick little recap as to how we ended up here much sooner than we thought we would...
In short, Margaret's conduit was basically failing and her tiny right pulmonary artery seemed to be most of the culprit.  The limited blood flow was too much for the conduit to handle and it began to leak.  Once it started leaking, things dramatically escalated and voila hello large and impressive aneurysm.  We continue to be thankful that we had already been scheduled for the heart cath which was when the aneurysm was found and we learned how sick her little heart was. 



As part of pre-op last week, we had a sedated CT scan so the team could get a good image of her heart, locate the MAPCAs and get measurements. 

Back to surgery...
Margaret went back to the OR at just before 3pm and it took about an hour to get her settled with all of the necessary lines and prep needed for the surgeon.  

Just a little after 4pm, surgery officially started.  Everything went smooth getting her chest opened (thank God as this was one part that was going to be tricky with her enlarged heart). We were able to get periodic updates from one of our favorite cardiologists throughout the long day.  We've adopted the "no news is good news" mantra along with our "we've got this" motto lately.  Margaret truly has already taught us both so much about being patient and just letting things go without too much extra worrying.

It was just over 10 hours from kiss to kiss.  Longest 10 hours sitting in the waiting room trying to entertain each other while not getting on each others nerves.  We managed to sneak down for a quick dinner then back to waiting.

The actual surgery time was just over 7 hours.  A bit longer than they anticipated.  Locating, isolating and re-routing the MAPCA was a lot of work but he was able to connect it to Margaret's right pulmonary artery.  That same artery was also patched to make it bigger and the stent was cut open and made larger as well.  

Margaret's conduit was replaced with a new one of a different type.  The new conduit, Hancock Conduit, is supposed to be better able to handle higher and wonky pressures that we know Margaret still has.  

Pacemaker wasn't touched and we are glad to continue having that little safety net.  We certainly are not in any hurry to have that removed but it is reassuring that she hasn't been using it. 

Her chest is still open and we expect a plan to be discussed later today or tomorrow for closing it since she seems to be stable and the bleeding is leveling out.  For now, she's being kept comfortable with a concoction of pain and sedation meds.  Working on getting her to pee and continue to be relaxed and rest.  

There are a LOT of tubes and wires connected to her so we will not be sharing any pictures of her post-surgery until she's extubated and has started to have lines removed.  

Thank you for continuing to keep Margaret, our whole family, all of the doctors, surgeons, nurses, etc. in your thoughts and prayers.  We love you all!

Surgery day

After meeting with the surgeon who is performing Margaret's procedure we find ourselves better understanding what they are aiming to do today and have a better grasp on how complicated this surgery can be.  She's basically having a combination of procedures rolled into one.  The risks of the surgery are scary but really there are no other options.  We are blessed with this precious miracle and watching her kick CHD butt is humbling.  She's so strong and here mommy and daddy can't wait to watch her grow and continue to "wow" the world!

*picture drawn by Dr. Moga while explaining everything to us

Here's a rundown of the day ... *I'll update as we gain more information and updates from the OR...

10:23 am - Margaret was taken back to the OR by the nurse anesthetist. It could be an hour or maybe 2 before the procedure actually begins. Margaret sure wiggled her way into every nurse here in Par 4's heart this morning. Lots of smiles, giggles and squeals while we readied her for his big day. We watched the nurse take her through the big doors and thankfully Margaret was all smiles and very distracted by this new friend who was giving her attention. 

11:52 am - the phone in the waiting room finally rings and we get "the call" saying surgery has started.  Margaret is doing well.  

2:19 pm - Cardiologist quick update: Dr. Moga has "everything opened up and he's able to see what he needs to have access to.  Observations so far:  the right Pulmonary Artery is slightly larger than he thought it was and the left Pulmonary Artery is slightly smaller than he thought.  Not good news, not bad news!  Slow and steady!  
*at least there is a L&O marathon on to distract us...

4:45 pm - DONE!  Great news on all fronts - Margaret was very well behaved for the whole surgery.  The VSD is closed (yay!).  The larger collateral was re-reouted to be connected to the small right pulmonary artery.  The Melbourne shunt was disconnected and the pulmonary arteries were connected to the new conduit -- this was extra tough because of how small the PAs are, but Dr. Moga is a miracle worker so we had no doubt that he could do it ;)  The pressures on the left and right sides of the heart will be closely monitored to make sure they end up at levels that are more desirable.  As of right now they are equal and that is not what they should be.  -- We are currently waiting for Dr. Moga to come in and tell us more, but for now, we are elated!!

It will still be an hour or more until we get to see our Mighty Margaret but you know we are feeling relieved and have some renewed energy knowing our baby girl has done so well.  

 

*That's 2 super happy parents right there!!  We cannot wait to see our girl.

5:30 pm - We had an opportunity to talk with the surgeon.  He is very pleased with everything and we are overwhelmed with relief and excitement.  There is a long road ahead but today was a giant leap in the right direction.  Mighty Margaret is definitely showing us all just how Mighty she is :)  Living up to that nickname for sure!!  

PEG ---> Mic-Key

Margaret went in to have her PEG feeding tube switched out today!  She now is sporting a much smaller Mic-Key button.  She did great and did not even have to stay overnight for monitoring!

G-Tube Surgery

Surgery went smooth and super fast this morning! From the time I handed her off to the time the surgeon came back to talk to me, it was less than 45 minutes! 

Our Mighty Margaret woke up pretty soon after she was brought back to recovery and was hungry and wiggly. She has since been resting (thanks pain meds...)and is probably going to be quite hangry when she wakes up again...No more tube on her face, though! Wohoo! She will be happy about that when she notices :)

We can't wait to snuggle her!