FEBRUARY 13, 2020
We’re at a Crossroad.
Look, today has been a truly special kind of awful. Some days have low lows paired with tiny highs. Some days have enough good news to hang our hat on at night and allow us to pick ourselves back up in the morning. This was not one of those days.
There was a setback in the middle of the night last night. Jon’s blood pressure dropped enough that they had to administer his previously weaned blood pressure medicine. In addition they had to turn up his VA ECMO erasing the previous day’s weaning progress. They suspect there is another infection but we don’t know much more information than that. His team also found a clot or blockage in his lungs from the CT scan results. They originally were going to perform a bronchoscopy to remove the blockage but after further review, Jon’s pulmonary doctor decided to postpone that procedure. Jon’s lungs are similar to that of a stretched, thinned out balloon that has been inflated to the maximum then deflated. His lung tissue is so compromised that a possible puncture from a bronchoscopy would be catastrophic, the risks completely outweighed the possible benefit. So what now? They plan to combat that clot/blockage with other non-invasive methods like suction and medicine to losses things up. The downside? This is a complete setback. Let me rephrase that, this is a line drive right back to the damn starting point on his VA ECMO path. VA ECMO is not designed to be a long-term solution. To put things in perspective, VA ECMO is generally used in a 5-10 day setting; Jon is on day 15 and has just been thrown right back to the beginning. The longer a patient is on this type of life support the larger the chances are that something catastrophic will happen. The injuries Jon’s body is sustaining on VA ECMO are worsening by the hour and those injuries are unrecoverable. Literally VA ECMO is saving Jon’s life but also slowly killing him. How’s that for effing satirical?
Want another blow to the gut? We didn’t either but got one anyway, so here ya go. To say that these life support machines are complicated would be an understatement. Their intricacy also leaves them vulnerable to the simplest of malfunctions. For example, his VA ECMO has a tendency to accumulate condensation, nurses have to tap the sides of it to release that condensation. If that doesn’t happen, the entire system basically shuts down. Jon’s team stated today that at this point, if any one of his life support machines malfunction they can’t replace them, his poor health wouldn’t allow them the opportunity.
So yes, we are at a crossroad here. The next few days will determine which route we take and none of that is under our control. Megan is living this absolutely excruciating existence minute by minute. We are however, confident that the next decisions that have to be made will eventually reveal themselves...
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