Posted on Tuesday, November 27, 2012 - 07:49 am:

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First Update
They just texted from the OR. Liv is doing well, stable with a new central, arterial and peripheral lines all in place. The doctors opened her chest about a half hour ago and currently expect to finish up anywhere from 7-9am CST. Hopefully updates will be fairly frequent between now and then.

Posted 6 hours ago by lmpd0617


3rd update
Somehow I think I missed posting a second update altogether but as of just a few minutes ago her new heart is in and they are starting to sew everything. The expectation is still that she won't e out of the OR before 7 or 8 CST

Posted 3 hours ago by lmpd0617


Update Four
Livvy is off bypass which is a huge hurdle. Currently the team is working on closing her chest and hopefully they will be done in another hour maybe a little bit longer.

Posted 59 minutes ago by lmpd0617


The Next 24 to 48 Hours
While the team is working on closing Liv up, the next 24 to 48 hours are going to be huge obstacles. There's a large risk of issues bleeding given that this is her fourth time in the OR. Risk of infection is huge. She could have an acute rejection of the heart which would mean some really desperate measures needing to be taken. It's possible that all her down time in the OR and on bypass could have done some neurological damage. Risk of stroke post-op is high as well as the body gets acclimated to the new circulation once again.

None of these are huge from the perspective of percents, but they all carry some serious consequences that I would be remissed not to at least tell you the information at hand. I haven't seen a transplant yet face to face however I'm expecting her to come out of the OR on as many medication pumps and drips as she did immediately following the Norwood which was somewhere in the neighborhood of 14 to 16. She will need blood, she will have an NG tube for nutrition, she will be sedated, paralyzed and intubated for the next couple of days.

I am so speechless at the opportunity she has been given at maintaining a normal life but I know this reward is not without its risks.

Posted 30 minutes ago by lmpd0617

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Posted on Tuesday, November 27, 2012 - 08:31 am:

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Step One Complete
The surgery is complete, Olivia is still in the OR for observation. She should be moved to her room shortly. She will be down and out for at least the next 24 hours.

Posted 11 minutes ago by lmpd0617

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Posted on Tuesday, November 27, 2012 - 09:24 am:

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She's in Her Room
Livster is back in room 1524 and they're getting her set up with all gear before anyone can go back and see her. The post-op echo is showing good function, the incision bled minimally and she's only required one unit of blood thus far. She is stable and the staff is pleased with how she's done thus far. The surgeon confirmed that they are going to keep her quiet until tomorrow morning and start weaning her off meds to find the right balance.

Heart families, I'll let you know more in the way of specifics and mechanics once I have the surgical debrief.

Posted 6 minutes ago by lmpd0617

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Posted on Tuesday, November 27, 2012 - 11:43 am:

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Miss Olivia

Looks great! She's not on as many meds as I expected nor is she swollen in the least. Given the amount of fluids they've given her I would expect she'll be puffy tomorrow. She has an external pacemaker in the event she decides to be a troublemaker but I love that her drainage tubes are smaller and there isn't as much supporting equipment (knock on wood). Thank you all for prayers and support, Missy is still going to need them.

Posted 57 minutes ago by lmpd0617

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Posted on Tuesday, November 27, 2012 - 12:28 pm:

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Post Transplant Download Part 1
This may be random thoughts but I'm just going to run through everything that's top of mind. Some of the details are graphic and they may be disturbing, so feel free to stop reading here.

We already know that the donor was a two year old girl who's blood type was also A+ like Olivia and thus a great match. She was approximately the same size as Liv and that made her heart optimal size as cruel and terrible as that is - it improves the potential success of the transplant. (Close my eyes, say a prayer here for that incredible donor family that just gave Olivia a new lease on life)

For whatever reason the lungs of the donor were not being donated; this was a bigger plus for Olivia because the procurement team was able to take a lot of the pulmonary arteries and replace Olivia's. This means she doesn't have a stent in her left pulmonary artery any longer. Bye bye medical device card. There was also enough Inferior and Superior Vena Cava to fully repair the re-routing that had been done by her previous Glenn and Fontan. She no longer has any artificial materials in the way of conduits or stents in her. You can see on today's post-op x-ray there are still three little coils in her collaterals from the pre-Fontan cath, but they are of no significance right now.

Her post-op x-ray of heart and lungs is stunning compared to yesterdays. A new four chamber heart for Olivia is approximately half the size of her old two chamber heart. Unreal.

Right now her new heart has had a few itchy moments but they have been regulated by a temporary external pacemaker. The staff is pleased, she looks good and I am remaining ever cautiously optimistic. Until she's extubated and talking to all of us, I will not really feel like we have a full handle on things nor do we have any reassurances that there was not any neurological side effect from bypass or anything else until we see some interaction.

Thank you all for the love, prayers and supports. She most definitely feels it and so do all of us.

Posted 19 minutes ago by lmpd0617

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Posted on Wednesday, November 28, 2012 - 07:27 pm:

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What's Going On Here People!?!?!?

I am quite certain that if Liv could talk this is precisely what would be coming out of her mouth right now. Sometime early this morning after rounds they turned off her paralytic but left her sedated. It was taking a long time to get any movement out of her, a long time, I mean where Mommy was starting to wonder - what is the problem people. But around 4 this afternoon, Sleeping Beauty opened those big brown eyes and started really moving her arms pulling at lines, her vent, making gestures (no middle fingers) and definitely indicating she was confused, in pain and wanted out.

Versed and morphine were given, silent cries ensued. More versed and morphine were given. Tears stopped but the gesturing was still going on. She has a gesture that she says with the phrase "all done" and she was making that. Very much like "All done - get me out" over and over. She pointed towards the door with anxiousness. Finally, satisfied with her BP, HR and all the other vitals, they came down on vent and nitric settings again and eventually gave her another paralytic that has a shorter half life - meaning they can control it easier and turn it off when they extubate tomorrow.

Just the fact that she was there making signs that I know and recognize flooded me with relief. The little girl that I know and love is in there just waiting to have the vent pulled so she can yell at all of us for doing this to her. Yell away Livvy, let it all out.

Posted 59 minutes ago by lmpd0617

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