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

“Jodie and I are at the hospital now and Max’s room was full people … two RNs (Holly and Jenn) and two RTs (Ron and ?). Jenn let us know that Max had a really rough night and day so far … his potassium is still high (though the continual albuterol doses have brought it down to 7.3). Jenn has another emergency medicine on hand, in case his potassium doesn’t lower … otherwise he could start having arrhythmia. His blood pressure is really low, so he is back on both the dopamine (at 10 mcg) and dobutamine (at 7 mcg). They are raising the dobutamine 1 mcg every 15 minutes unless his blood pressure comes up.”

“He wasn’t urinating, so he is back on a catheter and he has switched his scalp IV a couple of times.”

“Jodie, Steph and I just came back from the shift change and little Max’s potassium level is still high. Before she left, Jennifer called the doctor and he prescribed an aerosol medication (albuterol) to help with the potassium level. They administered one dose at 6pm, will do the next at 9pm and will check the level again at 11pm 11:30pm.”

“Shelly and Kim are his RNs for the night and Christi is his RT. Shelly just weighed him at 7 lbs 10 ounces … which some may be from the edema and some from the fact that he is receiving alot of fluids but is not urinating very much.”

“He is only on Dextrose right now for his fluids, but once they bring up another potassium-free mixture, he will be back on the nutrients.”

Little Baby Face 1

Little Baby Face 2

Little Baby Face 3

Baby Portrait

“Max’s electrolite levels (specifically potassium) are high right now … his RN Jennifer is working to find the problem (two small IV blood draws so far) and lower it, since too high of a potassium level ‘can be lethal’.”

“While she was testing his levels, she let Dad change his diaper … he definitely put it on backwards at first.”

Max got to spend some time yesterday with pretty much all of the immediate Cortez family (we missed the rest of you) … at one point there were even 4 generations in one picture! As you can see from the video below, while he was with Aunt Margie, he even did a bit of breathing on his own.