Casey has had a really busy week. She got all settled in her new bed at UCLA around 1:AM Wednesday morning. Tim had to be at work by 8:00 Wednesday so we did not get much sleep. I dropped him off then went up to UCLA to spend the day with Casey. She and I had a nice relaxing day. She had to do a few tests, but for the most part they had her just resting before surgery the next morning. She and I read some of her favorite stories, I held her a lot, and we just hung out. I went and picked up Tim after work and we went back up after dinner. Casey and her dad spent some nice holding time together that night.
Surgery was scheduled for 7:30 Thursday morning and they told us they would be coming for her around 6:30, so we decided to get to the hospital by 5:30 so we could hold her and be with her for a little while before she had to go. Around 7:00 the surgery team started to get her ready. We talked with the team a bit and were sent to the waiting area. They told us it would be about 2 hours and that they would either call or come for us. About 2 hours went by and we got a call. The nurse told us that things were going slow due to her liver being enlarged. About 2 more hours went by and we got another call. The second call they told us that they were finishing up and it would be about 30-45 more minutes. A little more than 1 hour went by and Casey’s surgeon came out to talk to us. The enlarged liver made it very hard for him to get to the stomach laparoscopy. While he was in doing the first procedure he had a hard time getting to the area, and Casey started bleeding. Since he could not get around he could not stop the bleeding. Casey had to get blood during surgery. Casey also had a hard time breathing when they would fill her abdomen with air so they had to stop a few times to help her breath. They finally got the fundo done and started on the g-tube. The surgeon tried all he could, but just could not get around the liver. He ended up having to cut her open afterall 🙁 The bleeding turned out to be minor once he got her open. Also, once he opened her up he was able to get the g-tube in place with out any more complications.
It was a really hard morning for our little girl, but in the end she did get all of the procedures that she needs. The respiratory group decided to be on the safe side that they would keep Casey on the ventilator for a little while after surgery. Since she is still intubated and will remain this way for a little while she is being sedated. She sleeps a lot, but she is not in pain. The open surgery requires a little more recovery time, so I think it is probably a good thing that she is sedated during the first few days. I don’t think I could handle seeing her in pain.
The NICU is starting to wean Casey off the ventilator, but it will still be at least a few more days before she is off of it. When she is intubated we can not hold her, so Tim and I have just been sitting with her and rubbing head and back and talking to her. We can still give her kisses, I just can’t pick her up. They took off her bandages today as well. The cut is closed very clean so hopefully she won’t have a bad scar. The tube hole is not very big at all. She looks really good. She is exhausted, but she is doing well.
Thanks to everyone for your calls, emails, etc wishing Casey well during her surgery. We will post more after we get her off the ventilator. After she has had some time to recover we will post some new pictures too, she is 8 pounds now 🙂 Our little girl is so strong, and growing so fast.