November 10: Don't rock the boat

Praise God the night was uneventful, at least uneventful enough that they didn't need to call us. Her biggest issue overnight was bleeding out of the leg (femoral) vein site where the dialysis catheter was placed to replace one of the ecmo cannula. She received a lot of blood transfusions last night to account for this. She's had to receive a lot of blood, platelets, plasma, and fluid to keep her blood volume higher, which keeps her blood pressure up. As a result she is very swollen again. The risk here is that this fluid will enter her lungs again making it hard or impossible to breathe. Since dialysis and since her blood pressure has been holding steady the goal has been to keep her "fluid even" which means whatever they put in is taken out again. Ideally we would take off his extra fluid and switch her to a different ventilator..but the theme today is "don't rock the boat." While her vital signs are stable no one wants to change anything, rightfully so after what we went through last night. Her liver enzymes were slightly improved today and the dialysis machine is efficiently removing toxins from the blood that's the kidneys usually take care of. I think today they may try to wean some of the drugs supporting the heart. She is on an epinephrine drip, a vasopressin drip, and milrinone drip. Last night she received 8 syringes of epinephrine before her heart came back to us. Have you ever seen the movies where they slam an epinephrine syringe through the chest and right into the heart of a dying patient to revive them? Well they basically did that 8 times last night, only through central lines. The doctor reviewed the strips and saw that she was at that near death point for 3-7 minutes last night but she still had a fraction of a pulse- so she never lost her pulse, her heart never stopped beating. The number of minutes she was "down" just gives them a starting point by which to judge the likelihood of brain damage. When she is far more stable another head CT scan will be obtained to look for damage. She is still on the anti seizure medication (Kepra) and will be for a long time, because seizures - though a result of brain damage (in her case), can further damage the brain. She is still on continuous EEG to monitor for seizures.

I know all my friends and family were right there with me when we thought she had died. Let me tell you exactly what happened. All vitals were crashing during the surgery and the doctor just kept shaking her head at me. She kept asking me if I wanted them to do chest compressions and then reminding me that the chest compressions wouldn't change the outcome. I never answered her. She told me that she was sorry and that they did the best they could. She said we'd just let the surgeons finish removing the tubes and then I could hold her. I wanted to let you all know what had happened on the blog right away so I could focus on holding Ava at that point...which was why my post was about 2 minutes presumptive. I cried for about 2 minutes then returned to pacing the room. I reminded myself that I have no right to predict what God can and cannot do or, rather, would and would not do and that there was no point is getting upset over it until God's will was absolutely apparent.   So I still don't know what God's will is, but I do know that all the doctors coming on shift today were 100% shocked that we are still here.

I'll keep updating. I hope that I have the opportunity to only report positive changes.
I love you all so much. You are so encouraging to me. I was tear-y eyed many more times yesterday over the love I felt from our friends than for the plight we were/are in.

11:00pm Nuttin New. Ava is still in a holding pattern. They are trying to wean the oxygen settings a bit so that she is not constantly on 100% if she doesn't need to be. Oxygen is also considered a drug. More is not necessarily better. Ava will be paralyzed as long as she is on the oscillator (breathing machine) so she doesn't fight it. The doctors are very eager, though, to get her to a different ventillator that better mimics natural breathing so that the paralytic can be taken away and her neurologic status can be better assessed. Right now her right pupil is not reactive to the flashlight. I'm too scared to look up the details, but I know it's not good. Under normal circumstances I'd be researching every paper ever written about pupillary response after ischemic injury but God has pulled Ava through so many trials lately that statistics don't mean anything to me right now.          They are fine tuning her fluids to keep her electrolytes in the normal range. The magnesium was out of wack earlier.       And that's it.

 Today went by very fast. I woke up feeling rested and, just like every other day, I feel completely beat after the first hour at the hospital. I start feeling sick the closer we get to the hospital and then sicker the closer I walk to her unit. I had to advocate a little for myself today. They had completely blocked in my lounge chair with equipment so I kept having to drag in office chairs from the nurses station just to sit down. I got them to rearrange a tiny bit and put another lounger in another corner behind the dialysis machine so I could lay down. I can take suprisingly solid naps in her room. The hum of nurses voices is kind of calming and I can relax knowing that I am so close if something does go wrong. It helps that I am not very self conscious and could care less if my mouth is hanging open or my behind is sticking out.  I'm sure I'm just tricking myself into thinking those naps are restful so I have an excuse to stay in her room. Hopefully Ava is resting peacefully with the familiar sounds too. 

We're back at the Ronal McDonald "hostel" for tonight. No frills here, but someone made some excellent dinner and we picked at the leftovers. Ready to hit the hay.