Day 445 - Chest compressions again

At 12:05 am, Ava had horrible tummy pains and pooped. Then she gagged a little, stopped breathing and dropped her heart rate to zero again. I tried to suction her mouth out, but nothing came out. We were bagging her before her heart rate dropped. She looked as if she just gave up. After 30 seconds of CPR, we yelled at Ava and I clapped my hands and she startled and came back to life. She got her color back very quickly and was back to normal. She was even falling asleep in the nurse's arms. We transported her back to Children's and she was still spitting up clear foamy mucous out of her mouth. They stuck her twice to get an IV in and she was again asleep and happy.

Her nurse put her G (tummy) to gravity and was letting her juices drain out and she had no spit ups. She wasn't being fed to give her tummy a rest. We wanted to re-create the home environment as well as the doctors had decided to leave her just to vent (not to drain out her tummy), so the G was back to vent when we left. We want someone (meaning a GI doctor) to decide which way she should be. I have not found any child that has a GJ or even just a G set to drain out their tummy juices either from other nurses, critically care families or on the boards on the internet. Except for other reasons like bolus feeds, medications or surgeries. So we have no idea what the answer is. Lung Center wants to order a "Scinta scan" to see how the acid reflux moves, so hopefully if the isotope is in, we will do that tomorrow. It's kind of sad that a GI department in a well known hospital is so poor that the Lung Center has to work on GI problems. They also seem to be acting as if this is our fault since it's not happening in the hospital. Her nurse even asked us if we (the nurses and myself) turned the O2 on when we were bagging her. It also wasn't asked in a non-insulting way, like "this may be a silly question...". I wish this was something we did wrong because then we can say that is why and never do it again. We have also noticed that her breath rate is very low when she is sleeping - in the teens.

Thanking God that Ava is still here and praying that we can figure this out and get her back home...