Casey had a big week. Her surgeon requested an upper GI before her surgery. To do this test they had to take her down to radiation. Since they were taking her down they decided to get her second CT scan as well.
The upper GI was really hard on Casey. She has been getting 4 cc’s during her feedings, but they have not been able to go past this amount with out her spitting up. During the test they had to give her barium and then follow it with water. In total the nurse said she ended up having to give her just under 30 cc’s of water. She spit up some, and was so tired all afternoon. The doctors decided to give her system a rest and hold off on feeds for at least 24 hours.
On Friday the doctors told us they were going to wait another day before starting feeds. Since she only gets 4 cc’s, and since they have to stop them 24 hours before surgery this week, Tim and I asked if there was any benefit in starting back up at all or if she would be better just staying on 100% IV until surgery. The doctor agreed that there was no benefit and so they removed her nose tube. This was the first time we saw her with out any tubes on her face. She looks great! She breathes a little better too. They still have to suction her, but not as often.
The neurologist came by on Friday as well. She had not seen Casey in a while and seemed pleased with the progress Casey has made, and with how much she has grown. She reviewed the CT and said that the swelling is gone, which is great to hear. She was not able to give us much more. She still wants to give Casey time to recover as much as possible. In addition to time she wants to have a few more tests run. After Casey gets back to St John’s from surgery she wants to have an EEG done. This test will show her if it is safe to start getting Casey off her seizure medication. Then when Casey is getting ready to come home she wants to do an MRI. This will show her any damaged areas. Even after the MRI we may have to wait a while to really know the extent of any damage that was done. The brain is still a mystery in so many ways and it just takes time. Everyone is still very hopeful.
For now Casey is resting and getting ready for her transfer to UCLA on Wednesday and surgery on Thursday. We will try and post later this week to let you all know how the surgery goes and when she will be moved back to St John’s.