Lucky number 10?

Hallie went in last week to have a gastrostomy tube put in. In essence, they made a hole in her stomach, one in her abdomen wall and attached them together to put a "button" through to create a permanent feeding tube. This was surgery #10, but who knows if it will be her last.

I was a little nervous (all right, more than a little) because we chose to have it done here in Reno, with a surgeon that we had just met. He was recommended by our Salt Lake surgeon, who has worked with him at the University of Utah hospital. They keep in touch and they even set up a conference call one morning, where they spent an hour going over Hallie's history with a fine tooth comb and what Dr. Scaife (SL surgeon) would do if Hallie presented with different symptoms. It is really important to me to have a surgeon here, who can at least do the diagnostic tests Hallie might need, so that she isn't shipped off to Salt Lake to just be taken off of food and then be sent back. And it is important to have a surgeon who is willing to hand Hallie off when she gets to a certain point-- making the best decisions for Hallie's health and not for his ego. I met with the pediatric surgeon during one of Hallie's hospital visits here, and I felt like I was totally blowing her ego by suggesting that she wouldn't be performing any big surgeries on Hallie, that we would be sending her to Salt Lake for those. So, I am comfortable with Dr. Devia (Reno surgeon), but regardless, he had never operated on Hallie and she is so complicated that it made me nervous. On top of that, she was having surgeon at a hospital where there pediatric unit consists of maybe 10 beds if they are lucky. They aren't very good at catering to the little ones and when we are used to a children's hospital, that is a big change. Hallie has stayed at this hospital numerous times, but having surgery there is another story.

Hallie's surgery was scheduled for Tuesday June 16. Originally we were told to be there at 5:30 am, but they bumped her back until 9:30, surgery at 11:30. She was not a happy camper not being able to eat for that long. The funny thing is that Hallie was so excited for this surgery. You would think that after her last surgery, she would have been apprehensive, but she wasn't really. She knew she was going to have to get an iv and she was even pretty good when I took her for her blood work the day before. She kept telling me she wanted to go to the hospital, days ahead of time. She was so thrilled to be getting a tube in her belly, where nobody can see it, although she now shows it off to everyone! Getting to the hospital, I went to sign her in and she started digging in her back pack to find something to play with. Unknown to me, Carson had helped her add a few things that morning, mostly food. So when we had to take it away from her, she started sobbing. It was a long wait. And when they tried to get her to do stuff, she was pretty resistant. They asked her to put on pj's. She sobbed. I finally convinced her, but it took some doing. They asked her to take her earrings out. She refused. They wanted her to put the little cap on. You would have thought we were asking her to end the world. It was pretty challenging. Especially since we are used to the children's hospital, where they tell you to not worry about it, that they will just take care of it after they get her to sleep. Her last surgery, she went back in her own clothes, earrings in, and no cap. Here, they just don't realize how traumatizing this is for a child who has spent her life in a hospital and knows exactly what to expect.

Luckily, they had requested a pediatric anesthesiologist and he was pretty cute with her. They had told us the anesthesiologist would be in soon and Hallie looked at us and asked if Anastasia was mean. We tried to convince her that anesthesia is a medicine to help her sleep and not feel anything and the doctor giving it was very nice. We asked why she would think that he was mean and she said, "Because in Cinderella, she was very mean and tore her pretty pink dress." What a crack up!

I requested they give her some medicine to help her relax before taking her back. It also has an amnesiac effect, so she won't remember anything leading up to surgery. It makes her pretty goofy. She had already had it in the picture above. It makes it so much easier for them to take her back and for me to let her leave.

Surgery ended up taking longer than expected because the surgeon wanted to take it very slow because of all of her scar tissue and the fact that her pancreas wraps around the bottom of her stomach. He had hoped to do it laproscopically, but she ended up with about a 3" vertical incision above her belly button. They gave her demerol for pain, which she had never had before and of course she had an allergic reaction to it. By the time I got back to recovery, her face, chest and neck were turning this splotcy red and it kept going until it was almost purple. It is a good thing I had insisted they give her benadryl before giving her the demerol. I would hate to have seen how bad it would have been without it!

Hallie did really well after surgery. She and I had a slumber party at the hospital, but she was ready to head out the next morning. We used the time in the hospital to try and pump some iv fluids into her and help her hydration level. She has a hard time staying hydrated because of how much of her large intestine she is missing. We ended up with several nurses that we had had before, which was great.

She is doing really well. She is mostly off of pain meds, except for if I know she is going to be more active, then I give her a small dose to help her out. She is VERY emotional since surgery. I had hoped it was just the anesthesia or pain meds, but those should all be out of her system by now. I am not loving this little phase. She melts into a puddle over anything. And I do mean anything. It is so frustrating because there is just no reasoning with her. I don't want to spoil her and just give in to everything, but it is so hard when she has gone through so much. We are hopefully finding a happy medium.

Hallie is really proud of her new "button". She loves that nobody knows she has one, but she also loves to show it off. Some of my friends have started calling her Button. It has been a lot easier to take care of then I had expected, although it is now starting to leak a little bit that I get to clean off every day. But all in all, I think it was a very good move on our part. I will post a picture of it when I find my camera!