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12/19–Verdict: No Real Sign of Trouble

Caitlin came back from her trip to the OR. Her surgeon and his fellow thoroughly searched for anything that could be causing the high lactate levels. The good news was that they did a deep and thorough search and everything looked good. No dead tissue to be seen. The liver is likely the problem, because it is swollen, still recovering from deep trauma and the blood pressure meds it had to process. But it’s working; it is not dead. So it looks like it needs some time to heal from the shock her body’s been through. We have to hold tight. Be patient. Remain positive.

Some good news was that her chest had stopped bleeding. The surgeon was very happy about that. Also, the left leg looks okay, like it’s not the source of the lactate trouble, but they will be keeping a close eye on everything, of course.

Friends, this is going to be a slow and atypical recovery,  and we are going to have to learn to live with that—-with uncertainty and worry and relief and more worry and hopefully, a final blast of relief.

Honestly, it all feels like a game of whack-a-mole.

But….. Dr. D’Cunha really made us feel okay tonight. As we’ve learned in Boston, there are so many doctors in a teaching hospital that you learn to be careful who you listen to. One guy said something really stupid over Caitlin today, in front of Nick. (“Might have to amputate that leg.”)

Nick dealt with him.

Dr. D’Cunha, referring to that, said, “Caitlin has two doctors—-me and her (pointing to the wonderful Lara, his right-hand fellow). “We’re the only two you listen to, and when she’s talking, she’s talking for me, okay?”

Okay! Happy to have her in his good, life-saving hands.

I also put a sign above Caitlin’s bed: Positive Talk ONLY Around Caitlin, Please !!!

Thank you, all, for all of your continued prayers and light and love. What a blessed holiday season this has been for us, and, I hope, for all of you.

FEROCIOUS POSITIVITY CONTINUES

–Maryanne, with Nick, Andrew, Jess

 

PS: In the spirit of the season, I think Caitlin would be really happy if I posted this picture of Henry for a little dramatic relief.

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Henry the darling reindeer

🎶   🎶   🎶   🎶  🎶   🎶   🎶

 

 

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.

 

 

12/18–7pm

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.