DNR

This is a worst case scenerio- I wrote this in a panic and I think it is perhaps almost wishful thinking on my part because it means Leif has a chance at life. I wrote it and now, only a few hours later,everything has changed. there is a calm.

with the question of DNR I am becoming deeply concerned about Mary's mental health. Eric is adamantly opposed to DNR at this time.

this is from Eric's emotional support person D:

From what I can tell Mary wants to end Leif’s suffering and her own and she wants a plan to do it. The open-ended nature of the current situation is intolerable (in the most literal sense of the word) to her.

Mary is the one disseminating information so is her information actually spun to such a degree no one actually has facts within her support network to see Eric's side? this is a really terrifying idea. She is constantly constructing and reinforcing the argument that  the situation is beyond hopeless and Eric is just not willing to see it. Could this actually be untrue? Mary has been having crying fits in front of Leif openly discussing his dying in front of him but not with him. When I asked if she could stop this she became infuriated with me. I then asked her if we could reinforce the idea with Leif that when she does this she is actually fighting a battle for him? this is an idea I think he already has to some degree. I am really worried about the quality of information. The other day she posted a very upsetting Facebook post about his status with a photo I had taken of her and Leif watching Grease. There was a huge disconnect between what she wrote and what was actually happening. I am frightened. We were having a lot of fun with Leif. He was in really good shape. Yet her recounting includes none of this.

I tried correcting it a bit in the comments- trying to fly under Mary's ultra sensitive radar for criticism. But what she said was going on and what I saw going on were night and day different. Yes her information about his statistics were accurate but everything else she seemed to miss. Yet everything that Mary missed is what Eric sees. She sees data, he sees moments when things are calm.  Eric is judging on his experience with Leif:  he looks generally well but has some diarrhea occasionally and is a bit low energy but still very much alive and present. Mary sees everything through the lens of numbers and diagnosis to the point she can not see she has the opportunity to be with Leif the way she claims she wants to be with Leif- which is the way Eric is with Leif. Mary's constant claim is that she could be with Leif that way if only Eric would step up and do everything she is doing. There is no way to take Eric's side in any discussion with Mary. The resentment is so deep.

I have to think through this possibility. Mary has said that her fear with further chemo attempts will be that even if they do work they would leave him in such a crippled state, physically and mentally, that his quality of life wont be worth living. And yet I have heard her say that his present body is so crippled and deformed that she often wonders if he would ever be loved and able to survive if he had not gotten this second cancer. But Leif is not at all deformed or crippled. He has a slight limp, one arm is slightly longer than the other supposedly. Mentally he is exceedingly bright. Yet for years she has been fighting for special needs for his  learning disabilities. I just haven't seen them. Does he have them? I have no idea. Everything seems in doubt. I do know that his chances of surviving are very low to nil. Both Eric and Mary seem to understand this but is it really time to give up as Mary claims?  I don't know.

UPDATE:
I am at the hospital. Mary facetimed from home to the hospital earlier with an ID doctor (infectious disease) and Eric. They established that they may not be able to get the gut under control with the antibiotics. Probiotics were finally mentioned as a possible help. Mary dd not understand probiotics. She thought that any gut flora that got into the blood stream could cause sepsis and kill him. I tried to explain to him that when Bill has cdiff I was instructed to give him probiotics along with the vancomycin, It used to be one would finish a course of antibiotics and then take probiotics to reintroduce healthy flora to the gut but in recent years doctors have been advising patients take probiotics throughout the course of antibiotics because at least they live for a little while and can do some good.  Mary said there was a study going on but that they weren't eligible because of Leif's age. I urged Mary to just add probiotics because it may not help but it would not hurt. She was sceptical but when we came to the hospital she was able to talk to two of her favorite nurses who explained to her that  sometimes probiotics were prescribed during antibiotic treatment. (why not for Leif?!? grrrr) We are now researching what probiotic could be put through Leifs NG tube and what actually has the amount of active cultures it claims to have.

When we got here Mary was able to talk to the anesthesiologist. She wants to know if his gut perforates and surgery is needed to save him but drs know he can not withstand surgery what happens. She wants there to be a plan in place so that there is no delay in giving him pain medication. Evidently, according to Mary,  in order for this to happen orders have to be in the computer so that whoever is attending can immediately get him medication. She worries if this happens (or indeed something else with the same outcome) that the pain response will not be in place. Nurses can't just give pain medication. They would have to contact a doctor or fellow but that might not happen easily or quickly at any time of day and certainly not in the middle of the night. It could take time, time in which Leif is in horrific pain. the anesthesiologist evidently will put an order in the computer for this possibility. this means Leif will die but not in horrible pain.
Mary seems to be having 2nd thoughts about Eric's perspective on DNR. Today She seemed to actually to lose some of her anger towards him and actually feel empathy for him. I don't know if this will last but I can only hope. We talked about Eric's role as a father and his job as protector of his son. Mary is the mother so she is fiercely defending her son, attacking anyone who might be ido Leif harm, meanwhile Eric stands sentry. He is the guard at the door. this model seemed to resonate with her, allow her to respect him. We talked about how Leif will die but that Eric has to go on living. Suddenly she was accepting of the idea that he was drinking and doing art to cope. Archtypes work for Mary.