Well yesterday and today Ava has been sleeping more than usual. Amy and I don't know if Ava is resting up or coming down with something. Today Ava had an extremely busy day (Amy went home so I was hanging out with Ava). OT worked with Ava on mouth stimulation which she did not mind. The OT said her tongue is performing better. I then held Ava and she was trying to sleep but the nurse had to pull tape from her arm to replace an IV line that was leaking, Ava did not like this. A few minutes later Ava had a hearing test, she passed. Ava fell to sleep on my lap for about an hour then I left for lunch. When I got back she went downstairs for a MRI. The doctors wanted to make sure Ava's brain was not bleeding or having any problems that could occur after being on ECMO. The MRI was normal. Ava then came back to her room and the nurse said Ava's Oxygen Saturation dropped into the 40 range when she was downstairs (most people are around 97, Ava is usually around 75 to 85). I asked why she dropped and the nurse stated she was mad when they moved her, I didn't get much more of an answer. The nurse was holding a mask up to Ava's mouth and nose to provide Ava with Oxygen and flow, at this time Ava was 55 to 65. I noticed the mask did not appear to be helping with Ava's Oxygen Saturation and looked to see what the Oxygen control was on, and it was not on, just room air, 21 percent. I told the nurse she needed to turn the Oxygen up and I then turned the oxygen to 100 percent. This helped bring Ava back up around 70. Ava then got a breathing treatment, which she hates. After the breathing treatment a nurse changed the same tape on the IV line again but this was scheduled. They clean and change the tape once a week so Ava became upset again when the tape was pulled off her skin. After Ava calmed down I left to eat dinner. I returned and Ava is currently on a breathing mask with the oxygen turned up to 80 percent and flow of 7 liters. This is a big step back, lets hope it's only for a short time. Ava was scheduled for a surgery tomorrow morning around 9 a.m. for a g-tube (feeding tube in the stomach). I just talked to the doctor and asked the doctor if I can cancel the surgery and the doctor said she will pass the information on to the surgery team. Amy and I think she was scheduled for to many activities today and just worn out. The doctors said Ava does not appear to be infected with anything. They said her x-ray of her chest looked the same and that her blood work was normal. The doctor said that the sedation she recieved today before the MRI might of caused this set back. As we have experienced before their are so many unknowns with the medical field. Well lets hope tomorrow will be a better day or Amy will think she has to return to KC sooner. Daddy is trying to comfort his little girl.
Do Not Worry
9 years ago