deja vu

Well, here we are again, the night before surgery. Five years with no surgeries, then two in two weeks.

Back up a week or so. Nate was healing pretty well. He never did start walking by himself after the surgery, but he'd walk a little with someone on either side of him, bearing a lot of the weight for him. But this didn't stop him from getting into trouble. We couldn't keep the boy still. He was crawling all over the place. "Nate, get off the back of the couch!" "Nate! Get out from behind the chair!" But that meant he was feeling good. Every day he was getting less sore and the headaches were decreasing. By Wednesday, we were just doing pain meds about once a day, and he wasn't having headaches.

Then Thursday night. I was getting ready to take him upstairs to bed, and I was checking out his back like I did a lot, of course. This night, there was like a big hump under the incision. I asked Blake if he thought that looked like more swelling than usual, and he agreed it did. Then I noticed he felt warm, and he had a fever of 101.4. Well, those things are certainly concerning, but I was also expecting Nate to get a fever because Georgia had an unexplained fever a couple days before. It lasted 24 hours and went away on it's own. So I called the pediatrician, and I called the on-call neurosurgeon, and both said to just watch and wait.

On Friday I had to go to Lexington for a work thing, and it was also time to pick up our van, which was finally all fixed from my little (okay, it caused $5,000 worth of damage) accident a few weeks ago. I turned in the rental van at Enterprise, and she drove me to the body shop, which I had never been to before. As I was getting out, the neuro nurse was calling, so I just waved to the driver and stood outside the body shop talking to the nurse for awhile. She agreed we should watch and wait. If the swelling got worse or the fever continued much longer, bring him to the ER. After hanging up the phone, I went into the body shop to find that she had dropped me off at the wrong body shop. So for about a half an hour, I was stranded! Enterprise came back to pick me up and drove me the 40 minutes to the right place!

By Friday night, the headaches had come back. The headaches are caused by all the fluid draining from his brain when he sits up. It was normal to have that right after surgery, but then they had gone away. It was wierd that they were back. By Saturday, he could barely even sit up without getting a headache, his incision area was "lumpy"--he had swelling in like 3 different spots both under and around the incision. And he still had a fever. For half the day I just kept expecting the fever to go away and was trying to convince myself everything was fine. I took some pictures and sent them to some moms I know who have gone through the surgery with their kids. But by late afternoon, I just kept thinking, "Something isn't right." I just had this nagging feeling, and I knew I would not feel comfortable just watching him.

Normally it would be no big deal to just take him to the ER. After all, I have taken my kids to the ER for far less than this! Remember when I took Georgia and it turned out she was teething? :) What I've learned is, if I have a worry about Georgia, wait it out because it's probably nothing. If I have a worry about Nate, act on it because it's probably something. The problem is that we couldn't just go downtown to the children's hospital in Louisville. I knew we had to go back to Vanderbilt. Dr. Tulipan had told us so when we were asking questions right after the surgery. That means I would have to drive 3 hours with him. And there would be an IV and blood tests and who knows what else. I'm all for being proactive, but I'm also all for not putting my kid through something traumatic for no good reason. So that's how uncomfortable I felt about the situation, that I knew I needed to put him through that. And honestly, I was really unsure I had made the right decision until this morning.

On the drive down, I used the harness so he could lay down. His head was still really bothering him, and now he had sensitivity to light, and the setting sun was killing him. I carried him into the ER and laid him down on a couch while I checked him in. Oh goodie, the little girl running around the ER had MRSA! "Nate, don't touch anything! Here's some hand sanitizer!"

He did need an IV, and they drew blood while they were at it. Neurosurgeon Junior came in to talk with us but wasn't too helpful. They decided to do an MRI, and we got in around 2 am or so. We had the creepiest nurse the whole night, and I couldn't wait to get away from this guy. I asked for a blanket, and he offered to wrap it around me? No thank you. This night sucks, and I don't need you chatting me up. Ick. When we came back from the MRI around 5, I got a cot and slept a little while, and they told me they had a room for us. I had no idea what the plan was.

He had been on IV fluids all night, and just like the last hospital stay, he started complaining that his bladder was hurting. I didn't really anticipate this would happen again. I was trying to help him, but the pain kept getting worse and worse. I told the nurse we needed to stop the IV fluids, and she was able to do that. But he was in terrible pain by this point. I told her they needed to cath him to empty his bladder. He is not cathed at home, but for some reason when he has IV fluids it's like it gets so full that he can't empty it, and it's painful. Last time that happened, cathing helped him. So I see the nurse trying to explain this to the doctor in the hallway, and he's confused and doesn't want to order that. And I opened the door so they could hear my screaming child, who was just rolling around in pain at that point. It got so bad that he had ME in tears, and it takes A LOT for me to break down in a setting like that. I usually bite my tongue and play the tough mom. I held him down as a baby while they put an IV in his head, and I sang twinkle twinkle little star to him. So you know it's bad when I'm crying, and I HATE that, having to talk to a doctor when I'm crying. I told him he had to just trust me on this one, that that's what he needed. And as soon as they cathed him, he stopped crying and felt so much better. That's another problem for another day with urology.

A little later the general pediatric doctor came by and casually mentioned that the neuro wanted to do a spinal tap. Say what? Y'all, I already had my mama bear channeled before that doc came in and was fully prepared to tell him absolutely not. But when a random doctor tells you something scary, it's probably not true. And that was the case this time. A different neurosurgeon came in and said they did see a pocket of fluid on Nate's back. That isn't totally uncommon after surgery, but they wanted to make sure it wasn't infected. So he just wanted to stick a very small needle in the skin and get some fluid off. Nate was throwing a fit about being held down, but he barely noticed the needle. He got quite a bit of fluid--that is cerebrospinal fluid (CSF)--out of his back to test. They went ahead and put him on antibiotics. The one hour results came back fine, and as of last night, it sounded like they just needed to finish up 24 hours of antibiotics and wait for some cultures and we would be going home.

I have to say, I had mixed feelings. On the one hand, of course I don't want there to be anything wrong, and I want to just get us home. On the other hand, I felt incredibly guilty for putting Nate through all of this awful stuff for no good reason. But I really, really just wanted to talk to Dr. Tulipan, and I knew I would get to do that today.

So around 6am, I woke up when a doctor came in the room. He is a neurosurgeon, one of Dr. Tulipan's partners. He said the good news is that the CSF is not infected, and we can stop antibiotics immediately. But, all this fluid on his back means there is a leak in there somewhere. So according to him, there are 3 options:
1. See if it will heal on it's own. But this is unlikely because there's probably some pressure forcing this fluid out of the back. With that constant pressure, the hole will never heal on its own.

2. A "wound exploration." This means opening him back up and trying to find where it's leaking. But, he said, there is risk of damaging the spinal cord, and there's only a 50% chance of actually finding the hole.

3. Insert a shunt. I thought I would fall out of my chair. Did he just say shunt?! My head was saying lalalalalalala so I didn't start immediately crying. But everything I went through and he went through for the fetal surgery! But I specifically asked Dr. Tulipan about this after the surgery, and he told me I didn't have to worry about it! This guy was saying a shunt would take the pressure off so the wound could heal.

So, I asked when Dr. Tulipan would be by to see us. He assured me Dr. T would be by this afternoon. He also admitted he didn't have the 35 years of experience that Dr. T has.

I was a total basketcase for about 2 hours. After he left I tried to escape to the bathroom to cry, but the nurses came in and made me talk to them, which resulted in me crying in front of nurses again, ugh! I hate doing this because I hate pity. So I had to go do some laundry because I only brought one change of clothes with us to the ER, and when I went to buy detergent from the charge nurse I almost cried again! And I read my Bible and prayed and basically poured out my heart and pleaded with God about this one.

The same neurosurgeon came back in after awhile. He had talked with Dr. Tulipan, and he wanted me to know that Dr. T isn't thinking about a shunt. He said, "I don't want to scare you with the idea of a shunt, I just want you to be prepared if it happens." Well, I had shown no fear when he was in the room earlier (only after he left!) so I didn't quite understand how he knew that was what petrified me. But he said that Dr. Tulipan thought we would need to do the "Wound Exploration" and he wanted to do it tomorrow. At first it sounded like things were still up in the air, but then he pulled out consent forms. He reminded me there was only a 50% chance they'd find the hole, and in the case that they didn't, they would have to consider other options, like a drain or a shunt. Dude, enough with the shunt talk. It ain't happening. And don't get me wrong--Shunts are lifesaving and awesome. But we've made it five years with no shunt, and we're not going to do this permanent solution to a temporary problem. I'm no neurosurgeon, but ... just no.

Then I had to start making phone calls. Honestly, I felt slightly relieved at the idea of the wound exploration, wierdly enough (I think this is why doctors always give you worst case scenarios), so I wasn't a basketcase anymore. But it broke my heart to have to tell Blake. We were so sure he'd be coming home today, and now another surgery? It's just too much. And really, this seems fairly inconsequential, but I just got a new job, and I have to miss a very important week of that. I told Nate, "This stinks." He said, "I don't smell anything." Hahaha, leave it to Nate to make me smile. I said, "Well, it doesn't literally stink." He took a couple sniffs and said, "Smells fresh!" What a character.

Okay, so Dr. Tulipan did come by this afternoon. First thing I said was, "Nate, tell Dr. Tulipan what you want to be for Halloween." Dr. T said, "Is it me?" I said, "Yeah, it's between you and a train." He offered to get him the mask, hat, and booties. :) See, Dr. Tulipan is warming up to us. He took a half second look at Nate's back and pushed on it a little and said, "Yeah, there's a lot of fluid in there." He said one possibility was to make him lay flat on his back for 2 or 3 weeks, and that might let the hole close back up, but both of us knew that wasn't an option. While he was saying this, Nate was rolling wildly around his bed with the covers over his head. He was climbing up the inclined back of the bed and trying to slide down it, people.

Dr. T said the easiest thing to do would be to go in there and find the hole. He assured me this surgery was far less serious than the tethered cord release, and he didn't expect to even see the spinal cord, much less touch it. He said Nate's dura--one of the layers they sewed up before--was really thin and there wasn't much to work with. So maybe that was the issue and where the leak is. He mentioned putting some sort of bio patch ... something like that. I'm sure he'll tell me again tomorrow.

I mentioned the 50% odds of finding the hole, and I really enjoy that Dr. Tulipan thinks more highly of himself than that. He thought the odds were more like 75-80%. I mentioned the shunt, and he said, "Oh, he must have talked to you before I talked to him, because I told him not to mention the S word to you! He doesn't know all that you all have gone though to avoid that." He told me to not think about Plans B and C right now, because Plan A is going to work. They are going to find the hole and fix it. He will want Nate flat on his back for 2 to 3 days, whether that's in the hospital or at home, he doesnt' care. I said, "Then you're going to have to sedate him" and he laughed, but I wasn't joking!

I do feel a lot better after talking to Dr. T, and I am just so glad that we have a neurosurgeon we can trust. It's frustrating when every doctor says something different, and you don't know who to listen to. Our ultimate hope and trust is in the Lord, but we pray that God will use Dr. Tulipan's skill and experience to heal our baby.

Blake and Georgia came to town tonight. Poor G, she has been missing us so much. Yesterday Blake called and said Georgia wanted to talk to me, and she said, "Mama, come home!" Then Blake texted me later that she had packed a bag with her babies to come see us. It's hard on her having me gone. She misses Nate too, and Blake missed her having Nate there too because he had to play with her every second. :) So tonight we loaded both kids up in a double wide wheelchair and took a ride and tried to enjoy being together for awhile amid the whining of two tired children.

We don't yet know what time surgery will be in the morning. We know that Nate is not Dr. T's first case, but we hope it's fairly early because Nate won't be able to eat or drink beforehand of course. We don't know what the plan is after that. I'm guessing he'll stay another night and then we'll possibly get to go home? But I'm just trying to become okay with not knowing the plan. It doesn't really matter if I know what's going to happen; it's going to happen that way anyway.

So please pray for Nate, that he will be strong and not be traumatized by these two surgeries and hospital stays. Pray that he will cooperate with the bedrest and that his little body will heal from the inside out, totally and completely. Pray for Dr. Tulipan's wisdom and skilled hands as he operates, and for everyone in the operating room to feel the presence of God. Pray for Georgia, that she will feel loved and secure throughout this uncertain time. Pray for me and Blake that we will be strong for Nate and that we will remember God's love for us, including Nate, and his promises and faithfulness. And above all, we pray that God will be glorified throughout this experience, and that we will all draw closer to Him because of it. I'm thanking God for deeply caring friends and family to support and encourage us. It really does mean so much to us.