Change of Plans

On Wednesday, we went down to Children's for Brooke's neurology appointment. It was just a followup and went well. The doctor ordered blood work which was done the next day. She also ordered a video EEG which we'll do at a later date. I don't remember seeing pictures of Brooke's CT scan and MRI when she had them done during her NICU stay. It was kind of neat to see them.

On Thursday, Brooke had her cookie swallow test and feeding evaluation. She was not a happy camper on the way down. She's used to eating and drinking at certain times so it was a very hard day for her. She ended up failing the test because she aspirated everything that was given to her. It became obvious that she would definitely need the G-tube. She was admitted that afternoon. She was given an NG tube which went through her nose and into her stomach because she needed to have her medicine. There wasn't an IV form of her medicine so that's why she needed the tube. She had a miserable evening and just kept on crying. She was hungry, tired and not used to the NG tube. We did not sleep well that night.

On Friday, she had an upper GI done. The results came back normal and she has no signs of reflux. About thirty minutes after we got back to her room, she went down to get an NJ tube. It's a tube that goes in the nose but ends in the intestines. It can stay in longer and we don't have to worry too much about it coming out. She did very well during that procedure and I don't think she needed to be sedated. We came back to her room and relaxed for a little. We both ended up taking small catnaps. I had a visit from one of my high school classmates.

Around 5 pm she finally got her first tube feeding. She was still fussy but it eventually kicked in. We had a visit from Mark and Sydney which was nice since I hadn't seen Sydney for two days. She said that I lived in the hospital now.

At 930 pm, Brooke finally fell asleep. After 10-15 minutes, I decided to go take a shower. I also took the opportunity to grab a snack from the cafeteria. When her feeding pump started to beep, it woke her up. She fell back to sleep quickly and has been asleep since. Tonight is much better than last night and hopefully she sleeps well. She definitely needs it.

We're supposed to be discharged on Saturday. I will update this entry or will write a new one Saturday evening. By then we should know when her surgery is scheduled.

Melissa