Day 18- Happy Fourth of July!

Anya started off her day by having a clot removed from her ECMO tubing; and she did not like it one bit. When they do that they have to take them off ECMO for a few minutes, and Anya was not stable during this time. She was started on a Lasix (diuretic) drip and the hope is that will allow her lungs to do more of the work, so we can wean her off ECMO.  Dr. Kays is back as well so that is comforting!

We are fighting an ECMO ‘circle of life’ right now (cue Lion King music):

1.       Circuit gets changed.

2.       Take baby off diuretics as not to dehydrate them.

3.       Because changing circuits is stressful and there are no diuretics, baby gains fluid in lungs

4.       Because of fluid in lungs, they don’t work well.

5.       Start diuretics after baby gets used to new circuit.

6.       Baby makes improvement. *

 Number 6 is the one we have a problem with. Anya’s little body likes to clot more than your average baby. Many other babies a circuit lasts longer, like over two weeks at some times. By the time Anya’s body has adapted to the new system, it is already clotted up and they need to change the circuit for safety, clots in the circuit could lead to stroke. So we have little improvement time.

She was really doing well otherwise today, she was already peeing off a lot of fluid so hopefully tomorrow will show some improvement, and this circuit will last longer than a few days. That is what I pray for.

It is hard to believe but this was Anya’s original due date! When we finally figured out her due date I had pictures in my head of delivering at St. Joes, being able to watch the fireworks at some point! Who could have imagined what happened instead. We are both missing Arwen; also missing blowing up stuff in Ruth and Dan’s back yard! we both thank God everyday though that we found this place for Anya to be treated, there is no place she could get the care she is getting now!

*(This is my take on what is going on. Even being a nurse I never did critical care and the specifics of ECMO are really beyond me! At the beginning of this journey I told everyone I did not need to understand ECMO in detail; but curiosity has gotten the better of me and I ask questions, so I have pieces of understanding. Every time I think I understand something and speak about it I generally get corrected in some manner, probably doesn’t help that I talk to so many different levels of caregivers who have different takes on ECMO and look at it in different ways!)