12/19, 5:30pm — Into the OR

Let’s hope they find something that’s causing these increasing lactates! This OR trip is proactive and good. Caitlin has a great medical team!

My aunt just asked a good question: Is she aware that she’s been transplanted?

The answer is YES.

She’s listening. We told her. We told her that the lungs are perfect Harry Potter lungs that are a perfect fit. Her blood oxygen saturation is 100 percent. (Before transplant, it was in the low 80s.) The pulmonary pressures on her heart have gone way down. As soon as the rest of her regains its previous good health, she’ll be able to enjoy her new ability to breathe again. What a gift, what a tremendous, generous gift.

All we know of the donor was that he/she was very healthy.

—The Team

DECEMBER 19–Another OR Visit

So Caitlin wasn’t going to make this a Hallmark Christmas miracle, no. That’s too easy, too sentimental, and Caitlin, compassionate as she is, is not one for easy sentiment.

This is tough stuff she’s going through. She’s still in critical condition.

The lactate levels continue to rise. That indicates there is dead tissue somewhere. They need to find out where. They don’t think it’s coming from the left leg but will have Vascular look at it while they are in the OR.

They are going to make a small incision in her abdomen and visibly check the liver and the bowel. Hopefully they will see something they can remove…  in any case, they will leave the incision open and covered for a few days so they can have access to the area and see what’s what. They will also open the chest covering, clean it out, and put another cover on. (Her chest is so swollen they can’t close her up yet; this is common after transplant). They will also do a bronchoscopy (clear out the lungs), as a lot of blood got down there yesterday.

This will happen in a few hours. They are basically going to move her entire “support” system into the OR, so as not to disrupt her as much as possible.

Everyone who worked on this very high-risk surgery has been in awe of Caitlin and how rugged her tiny tiger body has proven to be. But she’s in a quite hellish place right now, I won’t lie. A photo would scare you.

We need to stick with her. We knew it would be a very rough road, post-transplant, and it certainly is proving to be. But a successful outcome is the prize: Climbing hills in San Francisco with Jess, hiking in Maine with Andrew, traveling freely with her mostly companion (me) again.

I’ll send out a post  when she goes into the OR. The incision is simple, but how much time in there will depend, of course, on what they find.

–The team

DECEMBER 19–Update from the Trenches

Caitlin has new working lungs, but the rest of her is struggling, and she needs all the energetic help she can get, along with everything her incredible doctors are giving her.

1. Her liver is still in tough shape, but the numbers were slightly better this morning.

2. She’s producing a lot of lactate, which generally indicates lack of tissue oxygenation, but they are not sure from where. We need to get that number down, and ensure adequate tissue oxygenation.

3. On ECMO, a patient’s pulses are checked constantly. They’ve lost detection of a pulse in her left leg/foot, which is her non-ECMO leg, but it is too risky to bring her back to the OR to try and figure out what is happening here.

Normally, transplant patients are forced out of bed, even in pain, right away, to get them moving, but that’s impossible right now. We have to take it one hour at a time.

That’s our update. We’re so thankful we are on the other side of this battle, but she’s been dropped right back into the trenches, immobile and very beaten up.

 

–Maryanne, with Nick, Andrew, Jess

DECEMBER 19–3:50am

Caitlin has come out of the OR to her room at the ICU where the team is working to keep her stable. Right now, her biggest problem is her liver. It’s not functioning and needs support. The liver can take a lot of trauma and turn around so we have to hope that’s going to happen here. We can’t have a failing liver, or she will fail.

Her chest is open and covered with a rubber membrane because of the swelling. In a few hours, they will take her back to the OR to clean this area up a bit.

She’s got a lot of swelling and bruising.

So: lungs, heart, kidneys are okay and manageable.

LIVER needs all the help it can get.

DECEMBER 19–3:48am

Caitlin has come out of the OR to her room at the ICU where the team is working to keep her stable. Right now, her biggest problem is her liver. It’s not functioning and needs support. The liver can take a lot of trauma and turn around so we have to hope that’s going to happen here. We can’t have a failing liver, or she will fail.

Her chest is open and covered with a rubber membrane because of the swelling. In a few hours, they will take her back to the OR to clean this area up a bit.

She’s got a lot of swelling and bruising.

So, lungs, heart, kidneys are okay and manageable.

LIVER needs all the help it can get.

 

 

DECEMBER 19–Wee Hours

Dr. D’Cunha just came in and said she’ll be going back to the ICU in about half an hour. The bleeding has slowed down, turned to oozing. They are still concerned about the liver. She’s going back on full ECMO so that’s an issue. One thing at a time.

The small tiger is recovering in the right direction.

Dr. Jonathan D’Cunha–a man who has worked tirelessly for more than 36 hours now, to organize and execute a plan to save our daughter’s life.

 

DECEMBER 19–Still in OR

It’s past midnight, and all are still working on Caitlin, and that is still happening in the OR.  We haven’t had an update in well over two hours when one of the surgeons reported that they were trying to stop the bleeding in her chest wall. They were thinking that it was her liver causing that.

That’s all I know.

 

 

12/18–7:50pm

OKAY! She is successfully off the heart-lung bypass machine, and transitioned back onto ECMO. This needed to happen, and happen as quickly as possible.

The dialysis will work to hopefully reduce the lactates in her liver.

Thank you to our blessed real-life angel Sinead. I woke her up in London after the surgeon dropped the frightening news on us. She tapped into Caitlin, and worked with her for fifteen minutes, told me what was going on with her body, told me what I could do myself. I was up in the chapel and when I came down the elevator, Nick, Andrew, and Jess were waiting to tell me of the success.

This is going to be a very bumpy road… we expected it and it’s here. The recovery is tough, but we are all here to help her through this.

We are still waiting in the waiting area. She is still critical. But….

GUYS……………..SHE HAS NEW WORKING LUNGS!!!

12/18–7pm

Technically, the surgery is done, but they’re having trouble getting Caitlin off the heart/lung bypass. Her body needs to start up again on its own, generate blood pressure. They’re setting up multiple dialysis machines to try and help her transition off the heart/lung support back to ECMO.

That’s all I know at the moment. Prayers.

 

12/18 2:44 pm–Right Lung In, Perfect Fit

We got word that the lungs arrived safely to the OR at noon, and just recently got word that the right lung is already in. It was a perfect fit, with no trimming needed. This is what you hope for.

Her left lower lobe was removed when she was 11, so there is a lot of scar tissue on that side. That will be more of an issue, but it’s very very good news that the right lung went in so easily. I am overcome to know that our wonderful Caitlin now has a healthy lung inside of her! Google transplanted lungs and you will see what these people have been trying to live on for so long.

Thank you, thank you, dear donor and family.

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A tribute to donors, along “the bridge.”

Late yesterday afternoon, I brought Jess over to the “bridge,” which connects Presby Hospital to Montefiore Hospital. It’s the prettiest part of the complex here, with lots of glass windows, and walls lined with photos of bridges across the world. (Pittsburgh is called the City of Bridges). It’s been hard for me to go over there these past ten days, because I associate it with Caitlin, but I wanted Jess to see it. We walked along and looked at all the photographs, and talked about Caitlin, and how brave she has always been. For example, in 2012, she packed all of her oxygen equipment and medicines into a suitcase almost as large as she was, and rented an apartment for two weeks, alone, in Paris. As hard as that was to do, she knew time was running out for her to do it at all. Indeed, 2013 was the year she finally crashed and began to use oxygen 24/7.

After crossing the bridge, Jess and I went into the Meditation Room/Chapel and sat quietly. I wrote a request in the Prayer Request book. Jess said, “Can I add something?”

“Of course,” I said.

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She wrote, today.

Our friends MJ and Scott Hamilton told us about someone who is waiting for sainthood, but needs another miracle, so we added him, too. He died on Groundhog Day in 1921, and February 2 has always been an auspicious day for our family.

The surgeon’s call came at 10pm.

–Maryanne