Updates on Amy
It’s been a hard couple of weeks for Amy. She was put into a medically induced coma for a week but there was no improvement in the condition of her lungs. At the end of May she was moved into the ICU that is connected to her transplant team, and put on the fast track for her transplant. Since moving there she is doing well and is now on the transplant list!
Updates from Janine on 5/29:
Amy has severe double-sided pneumonia. Overnight they transferred her to ICU and put her in to a medically-induced coma so that they could put her on a ventilator.
With the existing damage from CF plus the pneumonia, her lungs weren't keeping up. Being on the ventilator will give her and her lungs are rest, and it is better for the doctors to have chose to put her on the vent than to have had to because she crashed and went into complete respiratory failure.
Once the new antibiotics have time to work, they will get her off of it since they try to use ventilators at little as possible. This is the first time she has had to be on a ventilator, and while it is very scary, Sarah said the doctors are optimistic.
Keep Amy in your thoughts. She has been in the hospital for most of this month and we want her to be able to get back home.
Later that day: Amy’s lungs are in worse shape than the doctors originally thought, so the team at Brigham and Women’s have told Amy’s family they want her to have her transplant as soon as a match is found. They have transferred her to the ICU at her transplant center, which is where Amy’s transplant team is.
Thank you to everyone who has reached out with messages of support, her family is so grateful for it. We will post updates as they become available. For now, all we can do is keep Amy in our thoughts and prayers and trust in her amazing medical team.
Update from Janine on 6/1:
Today the hospital put Amy onto a lung bypass machine, it's called ECMO (extracorporeal membrane oxygenation). Basically they have a tube for the blood that would normally be going into the lungs redirected into a machine that oxygenates the blood, then returns it to her body in a different tube so that it can be pumped out by her heart to feed oxygen to the rest of her body.
They hope to get her off the ventilator tomorrow, and they will hopefully be waking her up tomorrow depending on how neurological assessments go. The nurse said the surgery went well, and they don't think there were any problems with her oxygen levels.
They do need to wake her up to make sure there was not any damage to her brain from lack of oxygen while she was on the ventilator or during the ECMO surgery. She should hopefully be official listed tomorrow. After that, it is expected she will be waiting about a month for the transplant, but it is impossible to predict for sure when it will be.
It is expected that she will remain on ECMO in the ICU until the transplant. She is still very sick, but things are moving forward. Please keep her in your prayers.
Update from Crystal on 6/3:
Today has been a better day, but Amy is far from out of the woods. She’s still on the ECMO machine, but now off the ventilator at least. Her team is trying to pull her out of the medically induced coma slowly but surely. She needs to be a little more alert and communicative for them to approve her for the transplant. They are anticipating that will happen tomorrow. Once that happens, she goes to the top of the list. From there it could be days, weeks, or as much as a month before a match is found.
For now, the ECMO machine is doing it’s job. Like Janine said yesterday, she will be on that until the transplant. There’s a risk of infection while on the ECMO machine, but it is keeping her alive.
She’s able to nod yes or no to answer questions and even smiled at a few of my dumb jokes. However, just breathing and coughing seem to be pretty painful and uncomfortable for her at this point. She’s well taken care of though by her team here and we’ll update you all whenever we can.
From her sister Sarah on 6/3:
Amy is awake but she's suffering from ICU delirium. She was on a lot of sedatives and as her body withdraws she's going to be very anxious, confused, and tired. She isn't communicating and only opens her eyes occasionally, but can't focus. It could be a few more days before her mind can think clearly. She is still on life support (ECMO) but her amazing doctors and nurses say she's doing very well. We are waiting on the final word that she is on the transplant list which will happen as soon as the delirium wears down. Thank you for the love and support of her amazing friends and family...It’s been a whirlwind and we can’t wait for Amy to finally breathe easy.