Under Pressure

Nevaeh is now 3 weeks and 2 days post transplant! Everyday we thank God for each day that he gives us with Nevaeh! Everyday is an uphill battle for our sweet girl. Her x rays are looking better today, but lately her lungs have looked foggy because there has been fluid in them. The doctors have tried to extubate (remove the breathing tube) twice, but it did not work. The first time she went 4 hours without the breathing tube, after the 4 hour mark she oxygen levels started to drop and her CO2 levels started to go up. She stared to turn blue, and started shaking I thought she was having a seizure. Under more research the good news we found out is she wasn’t having a seizure, but she did have high levels of CO2 in her blood so she was hallucinating, and that’s why she was shaking and doing repetitive movements. Her body was fighting just to breath. She was only like that for a short period of time so she was able to come to a be aware after the team took action to re-intubate (put the breathing tube back in) her. After doing a moving x ray we were able to find out her right diaphragm was out which was causing her to have a hard time breathing. The only was we would have been able to find out was to extubate her and do that x ray. So after receiving that information we knew what the next for Nevaeh would be. Another surgery. That for sure was a let down for us all for her to have to go through another surgery. 2 days after her plication (flattening her diaphragm) so that her lung could fully open. Her team decided sense she was doing a lot better to extubate her again. She wasn’t doing to well at first but finally calmed down, after 27 hours she wasn’t getting any better, but she also wasn’t getting any worse, just staying the same. So the team thought it would be in her best interest to be re-intubate her so she didn’t get to the point where she would give up, because you could tell she was getting tired, and wasn’t receiving enough pressure from the bi-pap mask (high pressure mask from the vent that goes over the nose). From comparison from her last extubation we are feeling very confident in her next one, she has been doing ERT (extubation ready test) 4 times a day, also keeping down all of her feeds and meds. So many prayers are being answered for this sweet girl!

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