From Bad to Better

This morning I heard the resident come in at 6:30 and jumped up out of bed to talk to her. I told her about Nate's pain, his headaches, and throwing up, and that I was not comfortable taking him home today, especially for a 3 hour ride straight up in a car seat. She was fine with that and said to just see how it goes. A little later our case manager came in and took one look at him and said "Yeah, he's not going home today." (Then she said, "Does he always sleep with his eyes open?" I said, "Yes. I know, it's creepy.")

I was very hopeful that Nate would make a lot of progress today with moving and with his pain. I was just waiting for him to wake up so we could see how he felt. The nurses came in at 7, and he woke up long enough to tell them his dream: "I had-ed a dream that I was on a slide, and it started shaking, and I was calling for mama, and it was really scary! And then I saw Miss Melissa at a preschool-house ...." They were cracking up. Then he went back to sleep. Around 9 the PT came back in, but he was still asleep. I told her how I was hoping Nate could get on his feet and try to walk some today. She said she would come back later and we could take him down to the trains to do some PT.

And I just kept waiting! I got a shower, got the room straightened up, talked to the nurses several times ... and Nate just kept sleeping. I started having flashbacks to watching for signs of hydrocephalus! Is he sleeping too much because of the fluid on his brain? Then I remembered that he'd had pain medication and just a generally hard day yesterday and was probably just exhausted. Finally around 10:30 I woke him up and he was in a great mood. He told me about his dream again. :)

Then we had visitors! My friend Kathryn and her son Killian came by before heading down for Killian to have a dental surgery (last I heard he did fine ... and he was looking forward to what the tooth fairy would bring him for a tooth that had to be surgically removed). I think Nate scared Killian a little with the fuss he made about taking his pain meds.

So, then the PT came back, and this was the beginning of a really bad hour. He was afraid to move because it would hurt. He cried the whole time and protested everything. I could tell that sitting up, standing, and taking a few very supported steps was still quite painful for him, but a little easier than yesterday. He begged us to not move him and to let him lay down again.

He got another bad headache when we got him in the wheelchair. We went down to the trains, and we asked him if he wanted to get out of the wheelchair and push the buttons. He did not. At all. Refused. We talked and talked to him, tried to convince him, tried to bribe him, tried to make him. No. Finally we just pulled him out. And he cried so loudly and so pitifully that he was actually upsetting children all over the first floor. Families started leaving the train area. And a security guard came over to check on him! It was just awful. It's very hard to handle seeing your baby in pain like that. Finally, after about 20 minutes of this, we got him back in the wheelchair and out of there.

The headache came back. It's like a sharp pain in his forehead, and he wants me to put my hand firmly over it. We decided to take him to an outdoor play area, and once we got out there, all the color started draining from his face, and he started to hold his throat--which was exactly what he did last night before he threw up. So we hightailed it back to the room and lifted him back to his bed. He got some nausea medicine and we just tried to mess with him as little as possible for awhile. He was still crying and so upset and saying he missed Daddy. Break my heart.

I needed a little break. I went down to visit with my friend Laura who happened to be there with her son for a surgery! This seems like a big coincidence, and it is! Especially since neither of these kids having surgery have Spina Bifida (but one of their siblings does). By the way, he was just fine too. We talked and walked around for awhile, and I came back less overwhelmed.

While I was gone, Dr. Tulipan's nurse came by to drop off a prescription for us to take home with us. She told my mom that Nate definitely needs to go home tomorrow because he will heal better when he's in the comfort of his own home, and of course the longer you stay in a hospital the more likely you are to pick up something funky that you didn't come here for.

A case manager came by to get me to fill out paperwork to get Nate on "homebound" school for a couple of weeks when we return. A teacher will come to the house for an hour a day to keep him caught up on Kindergarten. :) Then the PT and another PT came by. Nate was NOT happy to see the PT who made him mad that morning, lol! He was fine with everyone else in the room except for her. He was giving her dirty looks. They came by to show us how to use a special harness that will allow Nate to lay down for his 3 hour trip home, so he doesn't have to sit straight up in his car seat. I was so nervous about that, not only that his back is sore, but because every time he's upright he gets bad headaches and gets nauseous. We would never get home without him throwing up all over my rental van! (My van is still in the shop from my little accident.) So this harness is a big relief, and it's crash tested and safe and all that. Nate was happy to hear he can lay down on his trip home too.

Nate had a little lunch and some pain meds (he still fights those, because they taste awful), and he was in a great mood finally! We moved him around a little, and even though he was hesitant at first, he saw that moving a little did not hurt him like it did that morning. I think we finally got on top of this pain. So I got him out of bed, and he took a few steps, still with a lot of support but bearing more weight than before. And this time he got in a wagon instead of a wheelchair!

It was so nice to see my happy boy, not in pain! His head felt fine too. We went downstairs to watch the trains (again) and went outside to look at the fish, where he stood up with help to throw a coin in the pond and made a wish for a new train. We went to the gift shop, where they had--guess!--a train! Mama bought it for him. Then Nate started to look pale and grabbed his throat again, so we got him upstairs pronto.

We had more visitors, Blake's cousin Nathan, wife Rachel, and two little boys. Unfortunately, Nate wasn't up for a visit right then and felt pretty sick. But they left us with hugs and a gift for Nate, which perked him right up a little later. He used the markers to mark all over himself and his blanket and anything in sight. There were dinosaur stickers and a dinosaur book, and Nate just so happens to be kind of into dinosaurs right now ... which we are encouraging in the hopes it will get him out of his train obsession! And a slap bracelet that we have had a lot of fun with. You should see him wince when I go to slap it on him, and the way he tries to slap it on me and hits me with the side of it. It was hilarious.

So the resident doc came by again, and this time because I was actually awake enought that I could pick her brain a little. You know how yesterday I was confused about the surgery? I said, "This may be a little late for this question, but explain the surgery to me." This poor woman had been working for more than 12 hours by that point, but she patiently explained what they did. And I'm a little embarrassed to admit that I learned a few things about Spina Bifida today. Okay, so Nate's original lesion was L2-L4. This indicates the bones on the back that correspond with where on the spinal cord there was damage. The spine is made up of bones on both sides of the spinal cord, and his outside bones were missing. They can feel on his back where there is just scar tissue (and muscle and skin) and where there is bone. So first day of surgical training they learn that to get to the bad part, you have to start with the good part. This means they had to go above where he doesn't have bones and do the incision where he has a normal spine. They go in and have to shave off a little bit of the bone just to get to the spinal cord (that was one thing I was confused about yesterday). Around all the nerves and spinal fluid is a sac that holds it all together. This was what Dr. T meant when he was talking about the sac, and this is what is usually protruding from the opening in the back when a baby is born with SB. I hope this all makes sense, because it became so much more clear to me. So they went from the normal part down to the scar tissue and got rid of as much as they could, but they didn't want to do more damage by hacking away at the scar tissue. (Those are my words. Maybe too gruesome.) Then they put a patch in there where the scar tissue had attached (I think to the bones in the back?) to try to prevent it from happening again. Then they sewed him up. First the sac, then the fascia (the stuff that holds the muscle together), then some deep tissue, then the top layer of skin, then covered that with derma-bond glue. He doesn't have a dressing over the incision.

I asked about muscle relaxers. A friend of mine whose son went through this last year told me the muscle relaxers helped her son more than the pain meds. And when Dr. T's PA came in earlier, she said she was going to give us a Rx for that, but she didn't. I asked the resident, and she said she wrote an order for Nate to try the muscle relaxer, and we would see if it helps, and if it does, then they will send us home with a Rx. She did not think it would necessarily help him all that much because they really didn't do much with his muscles, mostly just the scar tissue. We did give him the muscle relaxer this evening, and we just decided it made him sleepy and very cranky! He was being a little mean to Granna. He told her, "You're not the best!" and was biting our heads off over every little thing, like if his train came off the track, lol! So, we're thinking no muscle relaxers!

THEN Dr. Tulipan came by! I really doubted he would stop by before we left. After the fetal surgery, I remember he did not visit, and I had to make an appointment with him later, and he was not happy that I did that and acted like I was crazy. But he was nice today. I was concerned about the spinal fluid, headaches, nausea, etc., and I asked if anyone ever needed a shunt as a result of this surgery. He explained to me that the headaches are a result of LOW fluid on the brain, not extra fluid. That makes total sense, and I don't know why I didn't realize that before. They displaced a lot of fluid when they did the surgery, and it will eventually replace itself,, but for now when he sits up straight, all that fluid rushes from his brain giving him a headache. He said sometimes air can get in there and that can cause bad headaches too. I was relieved and told him I was worried about Nate sleeping too long this morning, and it took me back to the days of watching for symptomatic hydrocephalus. He said we're past those days and don't need to go back there. :)

I asked him about recovery, and everything was pretty much the same as I had learned earlier, except he did mention that he doesn't want Nate to run for six weeks. My fingers just stopped typing for like a minute, because I don't even know what to say to that. Nate is either at a stop, or running. He doesn't walk very much. No running for six weeks. Okayyyy. That's going to be difficult. He said it's not like a life or death thing that he doesn't lift over 5 pounds, twist, bend, or run. But it does make a difference in the healing.

I asked him how much we should push Nate to move. I have heard some parents say the best thing you can do is to get them up and moving as soon as possible. Dr. T. said to let him take his time and do what is comfortable for him. I asked what is too much, and he said not to push him to the point where he's crying. Well, that makes me feel just awful about this morning. Poor kid, I thought we were doing the right thing with tough love, but maybe it was all unnecessary. He did say that it's good to get him up as much as he can for strength and circulation. But now I know we can take it easy on him.

So it looks like we are going home in the morning, and I think Nate is ready. He will be more comfortable and happy at home. And I miss my girl! I talked to her on the phone tonight, and she didn't want to get off the phone. Just kept talking nonsense. :)

And I'll say this--Vanderbilt Childrens Hospital is just amazing. The nurses have been wonderful, we have the best doctors, the facility is AMAZING. There are three playrooms with toys for children of all ages, where they can go to play, or you can bring toys back to their room. They have a Ronald McDonald family room where you can go for free snacks. There are outside spaces made just for kids too, with castles and dragons and fish ponds and little statues and flowers. Everyone here is so caring and responsive and just on top of it. We made the best choice by coming here for the surgery, and for continuing to come here for Nate's Spina Bifida care.

Even at the end of a very hard day, and a very hard week, we feel blessed.