More Surgery Ahead

On Saturday, I talked to the attending physician during rounds about how long he expected Caden to remain in CVICU. He said he expected it to be another week but of course everything is subject to change. I also talked to him about the reflux study they had scheduled as well as the swallow study another doctor had mentioned to us. The attending said that he thought both of these studies were irrelevant and that if it were his child, he would just want him to have a G tube (feeding tube) put directly into his stomach and a sphincter placed at the top of the stomach in order to prevent any reflux into the esophagus. The G tube would be the means by which Caden would receive all his food until his vocal cords begin moving again. Once that happens, the tube could be removed after Caden is able to eat food by mouth. The G tube eliminates the worry for aspiration and provides the nourishment he needs to grow and thrive.

The attending spoke with Dr. Reddy, the cardiothoracic surgeon, and he was in full agreement in regards to placing a G tube. So, the pediatric surgery team was contacted for a consultation on Sunday. They met with Greg on Sunday morning and Greg signed the consent for surgery. We are not sure when surgery will take place. They said it will be later this week or beginning of next week. When I talked to one of the surgeons later on Sunday, I told him we would like to have it done as soon as possible. He acknowledged we had been on a long road and he said he would see what he could do to get it done sooner rather than later. Who knows if that will happen or not. The surgery itself seems to be minimally invasive and shouldn't take too long. However, the part that concerns me the most is that he has to go back on the ventilator in order to have surgery. Since it took 12 days to come off the ventilator after the initial surgery, I am worried it is going to take some time.

I talked to one of the cardiologists Sunday night regarding the ventilator and my concerns. He said he doesn't believe it will be near the problem it was after the first surgery. He thought this one would be much quicker, much less invasive and less traumatic on the body. He said the ventilator would probably even be removed in the operating room and if not, shortly after returning to CVICU. I pray this is true because I don't know if I can handle another 2 weeks of not being able to hold my baby! After talking with the attending again, it may be more realistic it will be a couple days before the ventilator comes out. But Caden has been unique in so many situations already, it wouldn't surprise me if he has a harder time than they think.

Otherwise, most other things with Caden are stable. He received a little bit of blood Sunday morning due to a low hematocrit. The surgeons removed some of his stitches from his chest incision and the scab is coming off so it doesn't look quite so gross. Unfortunately Sunday night his NJ tube got clogged and it had to be removed and replaced. Poor Caden has had to deal with the tube going in and out of his nose so many times, I'm sure it doesn't feel good! But once the G tube is put in, that won't be a problem anymore. Hopefully the G tube won't clog as easily.

The only other new thing is that Kyler is here to stay with us until we go home. We missed him so much, we didn't want our family to be separated anymore. So, he will be with us until we can all go home together. The hospital has many services/activities for patients and siblings of patients which is great. There is a preschool we can take him to from 10 am – noon and drop him off. The nice thing about this is that is normally the times the doctors round. So Greg & I can both be there for rounds. Then at noon, we can pick Kyler up, have lunch and then he'll take a nap. It will just mean a little more juggling back and forth with me and Greg, but there are options. There are other activities at the hospital we can do with Kyler as well. So between that and the things offered here at the Ronald McDonald House, we should have a lot of fun things to do with Kyler. And, he also likes to see his brother. Sunday when I took him in, he wanted to hold Caden, so I held both of them for quite awhile before I got tired. It was so sweet how Kyler wanted to hold him. He smiled at him, stroked his head and kissed his head. Adorable! Then when he was done holding him, he played with some toys on the floor on a blanket the nurse put down for him. He was happy for almost an hour, just hanging out. It was wonderful! So, hopefully we can have more days like that. But if he only lasts five minutes, that's okay too. We will just take what we can.

Today, they took Caden down to radiology to do a GI follow-through to track how food moved through his system. This is on the first floor of Lucile Packard Children's Hospital. I realized on the way down there with him that this was the first time in his 5+ weeks of life that he has been off the second floor of the hospital! Labor and delivery, NICU, the operating room, and CVICU are all on second floor. So he had never been anywhere else. But today he had a big outing and visited the first floor! Normally I think only a nurse accompanies the patient, but because of Caden's history, they sent a nurse practitioner along as well. Just in case something happened. Thankfully it was an uneventful trip there and back. We don't have the results yet, but hopefully it will show that everything is working the way it should be. This is something the pediatric surgeons really wanted to have done before they do surgery to put the G tube in.

Kyler loved the preschool this morning and didn't want to leave. When I came to pick him up, I asked him if he was ready to leave and he said “no.” But when I told him he could come back tomorrow, he said, “okay” and readily left with me. What a sweetheart. I'm so glad he enjoyed it. I think it will be really nice for him to have that to go to.