Thur, Nov 8th

Two Steps Back

We were anxious to get to morning rounds to see how Noa did through the night with the new ECMO circuit. We discovered that she had taken a little 'hit'. For some reason (probably trying to get her blood thinner figured with the new circuit), she was having bleeding from her neck where the cannula (tubes) enter her jugular vein and artery, as well as bleeding from an IV sight. Issue #2 was when they drew a blood culture and found out that she has an infection (not identified yet). The night physician started treating her with antibiotics as soon as he had the suspicion. And a third issue, is that she is back to retaining alot of fluid (she is super puffy/swollen) and her lungs have taken on fluid...which she will need time to recover from, and hopefully regain the ground she was at with her lung expansion.

We feel concerned, but wanting to spend quality time with Ruby and Emmaus, we went back to RMDH to take them out for a bit to run around in a park before we returned at 12 for our 'care conference'.

When we returned, we found that Noa's bleeding from her neck had not stopped, but all other bleeding had stopped, so they narrowed down that the issue was based more in the cannula sight and not the meds/fluids. It was a very large amount of blood pooling around her neck and very disturbing to see. Two different physicians came in at different times to treat her (put a special type of gauze on the sight and at another time, a type of sealing agent on her neck). But, neither worked. Because the bleeding is so concerning, its the type of issue that would definitely force her to come off ECMO. Nobody would want that, because of the step backwards it would be with her lungs and because of the infection she has. Obviously these are only the tip of the iceberg...there are layers of hits against her little body...liver, kidney, heart, stomach, surgery? So...not a good scenario to come off ECMO.

By our evening visit, they had decided to do a minor surgical procedure and put a few more stitches around the tube into her neck to close/secure the entry sight of the cannula a little better.  We are concerned and sad for Noa.  Right when you start to feel like you're making ground you're reminded how fragile she is and how sensitive this whole situation is. We are truly relying on God to carry us and our family through this...who can handle these ups and downs without Him?   

Justin visited Noa in the night, and said that she is more swollen than he has ever seen her, and she was still bleeding too much from her neck. We will wait and see what happens over night and what they decide to do.