Surgery Update

Tuesday as I was packing, I told Nate we needed to talk. Yes, I waited to tell him about this surgery until the day before. I didn't want him worrying about it, and it wouldn't have done any good to explain it to him earlier. He didn't understand anyway. It went something like this:

Me: You know how frustrated you get because these toes don't move anymore?

Nate: Yeah, but these toes (pointing to right foot) work!

Me: Yes, but do you remember that these toes used to work too?

Nate: Yeah

Me: Well, we're going down to Vanderbilt so Dr. Tulipan can fix it. Did you know he fixed the boo boo on your back while you were still a baby in my belly?

Nate: Let me see the boo boo on my back again!

Me: (Took him into bathroom, sat him on the sink, and let him see the scar) So Dr. Tulipan has to go back in there and fix it again. And you might be sore and hurt a little afterwards. Okay?

Nate. Okay. Will we get to see the trains?

Me: I will make sure you get to see the trains as much as possible. I promise.

And that was that. What more can you say to a 5 year old who has never had surgery? So we came down to Nashville, and the kids were having a blast with grandparents. I didn't sleep much that night, not so much from worry as from a very inconvenient head cold! We woke up very early Wednesday morning and got to the hospital a little before 6. Nate was very disappointed the trains weren't turned on yet. He told everyone the rest of the day that the trains were napping.

After checking in, we waited for about an hour and a half before we got called back. Everyone was great about explaining everything to us. A child life person came to tell Nate about what was going to happen in kid friendly terms, with pictures of all the rooms he would see that day. Nate was nervous and was trying to not cry, and I tried to be extra reassuring. There was a question of if he would go back with them or if they would need to give him Versed, and we decided to see if he would do it on his own. He got to choose if he wanted to ride the bed back, be carried, or walk. He decided he would walk.

Blake and I prayed, and then we just waited. It was about an hour and a half before we got a call that they were finishing up and Nate was doing fine. A little later we got to meet with Dr. Tulipan. Everything went as expected, and Nate did great. Apparently they actually go in a shave down the bone? and then he put a patch in his sac to try to prevent further tethering. Okay, I was so lost. I didn't know anything about removing bone, or that he even still had a sac? Like the original sac from way back to the closure surgery? This is why I am not a neurosurgeon. He told that it is difficult to tell for sure exactly what was affected, but the area of that was affected controls the lower legs and bladder. He was not overly optimistic that Nate would regain function in his foot, but he said it's possible.

About 45 minutes later, we were finally called back to see Nate in recovery. As I expected, he was very agitated and crying. I climbed in bed with him and tried to soothe him. He looked at me very confused and said "My back hurts." Poor guy. The nurse gave him more pain meds, and he was out. After maybe an hour and getting him to drink a little, they sent us up to a room.

Nate had to lay flat on his back for 24 hours. In recovery they told us that meant he couldn't even bend his legs, which I questioned because I didn't hear Dr. Tulipan say that. But they insisted, so we kept pushing Nate's knees back down every time he bent them. Later an attending who was in the OR with Nate came by and said that wasn't the case at all, and in fact she preferred that he lay on his side curled up.

Blake and Georgia left that evening so Blake could work and Georgia could get back on her regular routine. My mom and aunt are staying at a nearby hotel to help out with Nate. Despite everything, Georgia had a blast while here! She got spoiled by the grandmas, saw a concert, got a new doll, ran around like a wild child, and got to take naps on people all day. She is now confused as to why Nate and I aren't home.

Through the evening and night, Nate of course had some pain from the incision and didn't like to be moved much, but he also had a lot of bladder pain. I still don't quite get it, but I think it was a combination of having a foley catheter for surgery, being pumped full of IV fluids, and possibly gaining more bladder sensation from the surgery? It was a little difficult to keep him laying on his back and entertained. He would ask with tears, "Why am I laying down so much?"

We promised Nate that at 10:30 this morning, he would be able to get out of bed and go down to see the trains. He told me, "I think it might hurt my back a little bit, but that's okay cause I'll get to see the trains." PT came right on time to help him up. And it HURT. He cried and cried. She had him sit, then stand, then take a few steps to the wheelchair, then she did some exercises with his feet.

He also got some pain medication to help him move a little, and it made him sleepy, but he still went to the trains. He stayed about 30 minutes before I made him come back because he looked like he was going to fall over asleep. For those who don't know what I mean about the trains, Vanderbilt has a model train layout on the first floor, and it is awesome. I don't know how much it would have cost, but it was worth every penny. And not just for train obsessed Nate. All the kids love it.

Today he has definitely been in better spirits. This evening he was downright happy. I had received a voicemail from his teacher, and I let him listen to it. He CACKLED. His teacher started out with, "Hello, Colleen, this is ..." and he thought she was calling HIM Colleen. He laughed for a good 10 minutes, and then every time he thought about it later. The nurses could hear the famous Nate Payne belly laugh all the way down the hall. It did all of us good to hear that laugh. Here he is being silly with Granna's glasses on.

We got him up for a total of 3 wheelchair rides today. The last one was probably the worst. Whenever he gets upright in the wheelchair, he gets a stabbing headache in his forehead. It's from the spinal fluid regulating from him laying down so long and from the surgery. For the first two rides, he had bad headaches for a few minutes and they went away. For the 3rd ride, they didn't go away until I had him back in bed. I had to hold a hand on his forehead the whole time.

Nate has been eating very well, but late tonight he threw up. And it was accompanied by a headache, so it seems to be related to the spinal fluid stuff. He was so upset that he threw up.

So what now. Well, a couple people this morning were talking about him possibly going home TODAY. That is crazy talk. There is no way that he was ready to go home today, the day after this major surgery. Now everyone is talking about how he'll probably be ready to go home tomorrow. I am still skeptical. After all the pain I saw him in today every time I moved him, and after seeing the headaches, and now him throwing up, he's just not ready. Unless he seems significantly better in the morning, I am not going to jump at that, even though I would like to be home. Plus how am I going to keep him in a car seat for 3 hours?

The recovery for this surgery is more extensive than I realized. I mean, I knew he'd be in some pain for a week or two, would be out of school a couple weeks, and wouldn't be able to rough house or do gym for a few weeks. But we have to try to keep him from bending more than 90 degrees (like to pick something up) or twist his body much. He is not allowed to take baths, only sponge baths or showers (which Nate hates). I can't pick him up from under his arms because that could stretch things. So this could get interesting.

The new scar is a little longer than his old one, and perfectly straight, unlike his old one. It's maybe 6 or 7 inches long. He was asking about it today, so I took this picture on my phone to show it to him. We decided it looks like ... train tracks. :)

We have been eager to see how his feet are moving after surgery. His left foot that had lost movement is not back to normal, and isn't really expected to be, but I do think he might be moving it more than before surgery. The PT here said it could take months to get back to baseline, and possibly he'll never regain it. But we believe he will.

I think that's about all to report, and I need to try to get some sleep before the next visit from a nurse. Thanks so much for the overwhelming prayers and support from all of our friends and family. God has been very good to us, and we praise him.