12/20 Update: transfer requested

Finally getting to a computer. Emily is having a tough day. Yesterday was good, today is rough. Her HR and respiratory rate has been high, her O2 sats have been low, and she has been very uncomfortable -- not the combination we're looking for. This is s difficult process b/c we believe that Emily's condition requires a more aggressive approach if things are going to get better. We continue to discuss this with the PICU docs and it seems like they are changing their minds a bit, but there is a great deal of scepticism about what we are asking for. Oh yeah - sorry, we are asking that the Cough Assist, a machine that helps Emily cough, be used via her intubation tube (ET tube). This is a tube that goes into Emily's airway to give direct access to her lungs. This enables mechanical breathing, or assisted breathing, a well as deep suctioning. Anyway, they don't want to cough her b/c of some reservations based on past negative experience. There are good arguments either way, but at least three other big hospitals are coughing intubated kids with GREAT success that they claim leads to shorter intubation periods and, therefor, quicker recoveries. No studies have been done, so Hopkins is sceptical.

BOTTOM LINE: Emily needs respiratory care that is tailored to her needs, not based on standard PICU protocol. We are asking for tailored care and that is not a typical request.

At this point I am not interested in challenging policy anymore... Emily's life needs to take precedence RIGHT NOW. If that means going to CHOP, then so be it. Maybe I shouldn't press it here since they don't know what they are doing when it comes to coughing intubated kids, so maybe we HAVE to go to CHOP. That's what we're trying to figure out, but there are risks with transporting kids like Emily too. Oh the mess of it all.

So, this morning they changed out the ET tube for a bigger one b/c of a massive leak and we are trying to get Emily calmed down.

Please pray for Emily to remain resilient as we negotiate her care (seems like an insane thing to negotiate). Please pray for clarity as we discuss these things with medical experts. Please pray for a quick recovery. Please praise God for the things He provides for us during these difficult times.

Peace <><

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