Sun & Mon, Nov 11th/12th
Coming Off ECMO

Its 2:47 pm right now on Monday, and I figured the events that have taken place over the last couple of hours are worth posting now...along with yesterdays information.

I am waiting in the family lounge while Justin is back at RMDH while the kids nap. At morning rounds today, it felt like a "Monday" with lots of staff and information being exchanged. Yesterday was a rest day for Noa and they felt she looked good. As of this morning, she had gone almost 2 days with no sign of infection, so they felt that was under control. They also were able to take large amounts of fluid off of her that was needed for one reason or another (infection, circuit consumption, etc). One change they made was on her anti-clotting med...and they were continuing with that for now. 

Her xray looked pretty good, but there was some concern about air in her belly (which is up in her chest...so it's a concern because it's taking up very valuable lung space). They regularly pull air and fluid out of her stomach with a tube that stays in place. They even use an 'adult sized' tube to manage the situation (she doesn't like it very much...I see her gag on it a lot) and there was talk about replacing the tube with a new one.

Another very large concern is a blood clot in the circuit. Its in the 'bladder' portion, but can be dangerous if dislodged. If it does come loose, than it will move to the 'lung' of the circuit or possibly to Noa.

The plan was to trial Noa off circuit tomorrow. And its been communicated very clearly that if she doesn't do well off circuit (usually because of the acidosis due to her pulmonary hypertension), then they feel like they have done all they can with ECMO and there is no reason to continue prolong her time on the circuit. 

So- we left sorta stunned that the time has finally come. The line in the sand. And we were just planning on driving around today...it felt like the day we found out she had CDH. But before we could make plans, we were called back to the hospital. The blood clot had come loose and moved from the bladder to the 'lung' of the machine and they were changing it at the moment. Noa had been off ECMO for 40 minutes when we arrived and was looking good.

The doctor said they didn't want to have another set-back by changing to a new circuit with all that's been gained and they wanted to go ahead and use this time to trial her off and see how she does...but they had another ECMO machine on standby if it was needed. Another 10 minutes later, the surgeon came in and told us that it had been decided amongst all the drs, that she was doing well enough to move forward and thought it was time to remove the cannula from Noa's neck. So, Justin and I signed the consent. There is no going back on ECMO from here. And although we've put her in God's loving hands from the beginning...this is really a time of releasing her.

So- I am waiting to hear how the surgery goes. So many possible complications...massive bleeding, stroke, brain bleeding, and possible issues with trying to re-use the vein (for a temporary dialysis port) due to all the trauma that occurred with the cannula tube just a few days ago. 

This is surreal, but I do feel God's peace that passes understanding and know there is one set of footprints in the sand right now.