4:50pm

Family meeting with medical team at 2pm was a difficult meeting for everyone. The room was packed with supportive staff, Susie, Steph and Colby. Dr Alana began by stating than as we knew Max began this journey facing many major obstacles. His congenital issues were not going to improve, such as his brain and intestinal problems. This included not being able to breathe on his own and not having the ability to digest. Which also means he can’t be fed.

Max’s other systems have also begun to fail. Since the doctor was on shift three days ago,he noticed that Max requires much more ventalator assistance, probably due to his severe lung failure. His brain seems to be unable to regulate his blood pressure. Last week he was treated for PDA (the small hole in his heart), but treatment effected his kidneys causing additional failure. He is not a candidate for surgery. Max has gradual liver failure, relating to the plasma and vitamin K treatments. Since he can’t be fed, nothing can be done.

His eyes have bilateral cataracts and glacouma.

The goal at this point is to minimize further damage to his body and discontinue aggressive therapy.

We agreed with the team that it was in Max’s best interest to not continue any life saving measures and that a DNR ( do not rescitate) would be appropriate.
No further interventions are being done.
His catheter has been removed and they stopped monitoring his oxygen and blood pressure.

Daddy has been holding him for a couple of hours, reading to him. Steph and Colby went to pick up Jim and Sandy from the airport, and an overnight bag for us. We are staying at the hospital in the nesting room on this floor for parents.

Your continuing prayers are sustaining us, thank you all.

Transcribed by Susie