November 9: must get off ecmo

We are going to "trial off" ecmo right now. The trial will take about an hour. The surgeons will be on standby to remove the ecmo cannula and place a central line and kidney dialysis if it is successful.  This is critical. Pray that her heart pumps the way it needs to and her body can hold her blood pressure up. Pray that her lungs will take up and circulate oxygen. Her body is not at the optimal state for coming off ecmo but it really needs to happen. They said that even 24 hours after discovering the brain bleed is a long time. I'll have to update more throughout the day, depending on how things go.

3:20pm. First trial off ecmo failed, pretty quickly. We are going to let her recover for about an hour and try again. Her echocardiogram today was decent and her lung x-Ray was ok. She's kind of just- right there on the edge. They think she may be capable or we wouldn't be trying. She is still completely sedate and paralyzed. Her lactate lab value was down again today which is promising in terms of ongoing organ damage.

5:40 pm we want to bump up her hematocrit to help increase her oxygen carrying capacity and to help support her blood pressure. It took a long time for the blood to get to our room because there were 5 or 6 traumas that came in. So now we are running blood, which will take about 30 minutes, then we will have another trial.

7:00pm on trial again. We have some scary stuff that God is going to have to take care of.  She is tolerating this wean better than earlier today. Doctor wants me to give a "do not resuscitate" order if she has another cardiac arrest during this process. I did not give an answer.   I believe in miracles..I've already seen them, but I also believe that God is in control and I don't know what He has planned. We are commanded to pray, so we'll just continue to do so.

7:02pm we are calling surgery to be on standby for decannulation...to take the ecmo tubes off of her.
I'm nervous..kind of regretting that I ate dinner.

7:22pm I just signed the consent for decannulation. She is barely being supported by the ecmo machine now. Surgery will be in about 45 minutes. They will remove the cannulas in the neck and tie off that vein and artery. It's the carotid. Then they will remove the cannula in the left femoral vein in the leg and replace it with a catheter for dialysis.

7:46pm we are about 10-15minutes from decannulation. Surgery team is arriving. Blood pressure and oxygen are holding. They tell me they are going to also try and place a short central line where the right cannula are.

8:27pm Dr Rawlins and Dr. Lee, the fellow, are just starting to take out the neck cannula. These are two tubes/cannula, each about the width of my little finger. The heparin has been slowed to help slow bleeding and after the process is complete heparin will be stopped completely and she'll start to get blood products that will help her clot.

8:33pm. We are officially off ecmo.

8:40pm.  My baby is going to Jesus.  Cry with me!

8:49. She is still hanging on with epinephrine and blood products.

9:05pm. Ava is still alive. Praise God. Still working on her.

9:30pm Surgery has cleared out of the room. They said that from a technical standpoint, they accomplished everything they set out to do. For the moment her vital signs are holding. Her labs are funky but Nephrology is coming to hook up the dialysis which will help correct her la
b. The doctor is worried about how the current oscillator is ventilating her lungs so we have a different ventilator on
standby. She doesn't want to disrupt Ava again because she is obviously very touchy.      I'm sure I just witnessed a miracle. Oh my.

10:40pm Ava's neurology exam after this near death was ok, not perfect. There may be some damage but her brain is definitely taking up the oxygen so we just go forward. Her liver is failing as indicated by her extremely high ammonia levels, but that can be corrected with dialysis.  Getting on to dialysis is our next hurdle. Since her kidneys and liver aren't working she needs this to take out the toxins from her body. We are just now waiting for the dialysis machine to warm up. Ava doesn't like fluid shifts so we hope she tolerates this perfectly.

11:34 pm vitals are not as perfect right now, but Are ok. We are giving her fluid and blood to keep the blood pressure up. Her oxygen is 86. She was just hooked up to the dialysis machine. We are going to keep her fluid levels "even" meaning, at this point we are not going to pull off any fluid. Her lungs might be a bit "wet" but we'll have to deal with that later.

11:49pm vital signs are better now that she was given some blood and albumin. Now we just hang out and make little corrections based on labs throughout the night. This is assuming that her heart and lungs keep up the good work. I don't even know what to do tonight. The hospital does not have a place for Ivy to stay with us and I pretty much need to stay with her. Not sure what I'll do...but I'm glad that's my biggest problem right now.