Thur, Nov 15th

Day 3 Off ECMO

I shake my head in disbelief everyday Noa is off ECMO. It is still day by day. And it has been pretty crazy to live like that. I realize that I would love a plan or to know what to expect or anticipate for the future, but I can't. Honestly this is such a regular lesson on letting go of all control.

At this point, I think we are sort of waiting for Noa to settle out from her move down to a different floor and transition to life off ECMO. And although she has hit a few bumps with going back on dialysis...her doctor has informed us of the general short term plan, AND has set it into motion. 

Her first night off ECMO was strenuous because of 2 (or was it 3?) hypertensive crisis' she had...either related or unrelated to going back on dialysis is unclear. But this morning when they scheduled her to go back on dialysis, they had a new and different plan in place to try and avoid a reaction from her like last time. One of the things they changed was to hyper saturate her with oxygen so that when she received fresh blood from dialysis, her body didn't have to work as hard to oxygenate that blood. They also took the time to slowly turn the flow up to its regular rate on the machine instead of all at once. Seemed to make a difference...for 10 minutes until the machine started to shut down because it was experiencing 'resistance'. So, they had her back off dialysis and spent the day trying to figure out what the complication was. In the end...they put an anti-coagulating med in the catheter (in case clots had formed) and it seemed to work. She was back on dialysis by 5 this evening and when I had my last visit at 9ish, all seemed to be ok. Her stats were pretty good and her gases were fair.

The plan now (that I mentioned the doctor had put into motion earlier) is to slowly ween her off the many meds she's on. She has been on two different heart meds and she's already been taken off of one. They also have decreased the second one considerably without ill side effects. These are good things. Another plan is to change some of the locations of her IV's and remove the ones that go thru her umbilical cord (belly button).  And, they will eventually ween her off of different machines (nitrous oxide, dialysis, and finally get to 'room air' with her ventilator). This will take weeks. And all of this to slowly prep her for surgery. 

She is slowly healing on her neck where the ECMO cannula were (I was able to see a the very large line of stitches on her neck when the dressing fell off today.) And they also removed the tube from the side of her abdomen (which they had used to released fluid that had built up next to her heart a couple weeks ago). 

I think that is most of the update....we will deal with things as they come. Sometimes I am unsure how much detail to include...but people can skim or 'dig in' according to time/interest!

On a personal note....I haven't taken much time to reflect or process all that's gone on (and all that's going on) since we arrived from Spokane. For some reason I keep feeling like I'm only in the moment with the immediate needs. There is a part of me that is disconnected and just going through the motions. I pray that both Justin and I take some time to debrief as individuals and as a couple in the next week or so! 

Thank you for all your prayers. I am so touched by all the stories I hear of people turning to God...even on their knees...on behalf of Noa and our family. It's awesome to know you are spending time with Him...because he is good and kind and wonderful. 
We love and appreciate you.