November 14: please clot baby girl

02:00 am We were called in the middle of the night. The calls we don't like. Ava is bleeding from her stomach we think, an upper GI bleed. They have pulled off about 120mL (8am back edit: 300 + mLs) of blood so far. She is getting emergency transfusions, plasma, and platelets. She MUST clot off. The GI docs say that she is too high risk to try and go in endoscopically to try to find the bleed to cauterize it.    Shaun isn't doing so well. I'm just glazed over. I kind of wish I'd just vomit, because it seems like if my body did something-anything I would feel better. 

8:15am Bleeding has slowed. She has received a LOT of blood, plasma, and platelets to keep up her blood pressure. She is paralyzed again and has an anderson tube from her nose to her stomach to help get rid of the blood. The catheter that is in the g-tube hole quit draining, probably because it has a blood clot on the end of it. Nurses are also emptying blood from her colostomy bag. It looks like maybe a little blood got in her lungs. Her oxygen saturations have been a little lower. Higher vent settings has helped counter this. I hate to see that, though, becaue higher vent settings put more stress on the heart. 

All the PICU docs, residents, fellows, nephrology (kidney) docs, neurology docs, and GI docs are meeting to discuss Ava at 8:30 am. 

I was here all night. I am super exhausted. If Ava is stable I will be able to get a little sleep in this lounger. 

9:37 am The meeting with the big wigs is over. They still don't want to scope her stomach because of the risks and because it probably wouldn't change the management anyway. Her prognosis is poor...what's new? It's been poor since day one and I've always known this.  They want me to draw a line in the sand so they know when to stop treatment. They kept looking at me and even directly asking me like I had some big decision to make based on limited information. I won't do this based on statistics and probablities unless her condition worsens and does not recover...asfter giving her a chance to recover. They talked about atypical HUS again. One of the treatments for this is giving plasma, which we are already doing so we might send a genetic sample at this point, but I think that they think she won't live long enough for it to matter. All of them have a very pessimistic view, maybe realistic view, but its not helpful. I already know she has a million potential problems that could cause her to pass away. It is not helpful to remind me every day of all the potentials rather than looking at what Ava is doing. The bleeding IS managed. The kidneys ARE managed with dialysis and her labs ARE improving thus far. That is what Ava is showing us right now. I don't need to dwell on all the bad things that could happen tomorrow just because they are risks and we don't know how the organs were affected by lack of oxygen.    

Hospitality cart is here...I'd better run so I can get a snack.