deja vu part 2

Surgery day. (Yesterday, Tuesday. I tried to write this last night, but my eyes wouldn't stay open long enough.)

At 5am, the nurse came in and told me we were on the schedule for an 8am surgery. Really? Because Dr. Tulipan told me yesterday afternoon that he had at least one case before he could get to Nate tomorrow, and that it would probably be 10 or 11. Nope, she said, it's at 8. Huh. So I got up at 6 and showered and got ready for the day, and they came to get us at 6:30.

Nate was in kind of a bad mood. I don't blame him--it was really early, and he had been woken up by pokes and prods. The care attendant tried 6 times over the course of the morning to get his temperature and never could get it. He was so over her, and so was I. But I was trying to talk and joke with him and get him in a little better mood, and it was working somewhat. They came to wheel Nate over to surgery holding, and on the way over, I mentioned again how strange it was that Dr. T told me Nate would not be at 8am, but now he was. They all brushed it off.

We got an annoying nurse in the holding area. I hate to complain about such things, but come on, it's really early, and I have a little boy going into surgery. Stop being loud and joking around and telling me about the ebay auction you lost. And stop checking your personal email on your phone when you're supposed to be prepping my child for surgery. She turned out to be kind to Nate, so I'll let it go, but let's just say I hadn't had any caffeine yet and had a hard time handling such annoyance. That's bad, sorry.

Nate was pretty happy, and then the anesthetist showed up. Same guy we had last time. Nate liked him last time I saw him, as we were prepping for the last surgery. But this time his face turned sour as soon as he saw the guy. Anesthetist said, "He really doesn't like me." It had something to do with the mask in the OR last time. Nate hid under the covers while we talked. This time around Nate was very resistant to even the thought of this mask--the one they administer the gas with--so we decided he should probably get some Versed. You know Versed, right? I've had it before, and it makes you pretty much okay with anything that happens. So I had to hold him down and squirt the stuff in his mouth, and it tastes awful, apparently. (His IV had gone south, and they would do another one in the OR, so he couldn't get it through that.) After about 15 minutes, he was my happy boy again. I knew it had taken effect when he looked at me and said, "Whoa. You have a lot of teeth." Ha!

So, 8 am came and went. The OR was ready, anesthesia was ready, the nurses were ready, and Nate was ready. Who was missing? Dr. Tulipan. I had already mentioned to everyone my conversation with Dr. T yesterday that Nate wouldn't be his first case of the day. Finally, the nurse called someone. Oh. He had just finished assisting someone else with a surgery, and now guess where he's going? To do a fetal surgery in the main hospital! Well, that's kind of neat. But what happened to us? I still don't know what happened, but the right people did not communicate well this morning, and that left us sitting in surgery holding for over 3 hours!

Anyway, at 10am they took Nate back for surgery, and I joined Blake and Georgia in the waiting room. We got something to eat, and Georgia played for awhile, and before long they were calling me back to talk with Dr. Tulipan. As a reminder, the goal was to find the hole leaking fluid. Neurosurgeon #1 told me there was a 50% chance of finding it, and Dr. T said it was more like 75-80%. If they didn't find it, we would have to talk about some options that I didn't want to think about.

Well, guess what. He found the leak. Hooray! Dr. Tulipan rocks! Maybe I'LL be him for Halloween! :) It was such a relief and an answered prayer. There was a tear in the dura, which is what Dr. T had told me the day before was kind of thin and hard to close in the detethering surgery. He stitched it up good and even put some glue on it. He said he wanted Nate to lay flat for 2-3 days. That means his head needs to be at the same level as the rest of his body. He doesn't necessarily have to be on his back--it's fine to be curled up on his side, or on his belly, and a pillow is okay. He said this strict bedrest can be here at the hospital or at home, he doesn't care. He thought Nate might be ready to go home on Thursday or Friday, but no rush, whatever we think is best for him. Then for the next 2-3 weeks, he's to be on modified bedrest. He can get up to do something, but he needs to be laying flat for a good portion of the day.

When I saw Nate in recovery, he was actually in a decent mood, just very sleepy but not crying like he was last time. His face was very swollen, from laying face down through the surgery. They warned me this might happen with both surgeries, but it didn't last time. This time, he could barely open his eyes for the swelling. We got him moved back up to his room fairly quickly, and we all talked about how much better he seemed to feel this time than last time.

Different medications were ordered for the pain this time. He is allowed morphine through his IV, Tylenol chewables (which Nate actually likes!), or Tylenol with codeine (aka "yucky medicine") this time in tablets instead of liquid. In the evening, the nurse tried to give him a dose of morphine, and his IV had stopped working. Dangit! She took it out, and I decided we would try to manage the pain without it. I just really didn't want him to go through getting his 3rd IV in 4 days--his second in one day. We decided to try to crush the yucky medicine tablet and put it in milk. Total backfire. I forced him to take a few sips, and he refused the rest. By night time he was so uncomfortable and needed the morphine. The nurse told me they were going to have to come stick him anyway in the middle of the night for labs, so we just decided to do the IV and labs at the same time, a little earlier.

Do you ever just feel totally under-qualified for this parenting thing? I have to make these decisions for him, and sometimes what's best for him hurts him--literally. It was so hard to give consent to let them do another IV. And boy he didn't like it. Instead of just crying--and he did cry--this time he got mad. He told that IV therapist, "Let go of me... Let. Go. Of. Me... LET GO OF ME!" Of course he doesn't understand that this is what is going to make him feel better. I wonder how scary it must be to have people at every turn just inflicting pain on you and you don't know why.

Also, the bladder spasms are back. When he woke up this morning crying about that again, I determined I would get urology here to see him today. I had already told every doctor and nurse I saw that I wanted urology here, but nobody had picked up that ball just yet. Maybe I just needed to say the magic words "Urology Consult." So today I told our surgery case manager and also our SB clinic nurse that I wanted them to tell the neurosurgery nurse that we needed a urology consult. It makes no sense to me why that was the proper order of things, but once I learned the order, I did it twice. And guess what, two urologists came by, with promise of a visit from our usual urologist. We still aren't quite sure of the problem, but there are a few theories floating around, and a couple plans of action to choose from.

So Nate is pretty uncomfortable today, and we're trying to figure out the right combination and timing of pain meds to get him comfortable. It's possible we could go home tomorrow, or maybe Friday. We'll take it hour by hour and see how he's doing.

I also wanted to say again how much it means to me to have friends and family offering to help and just encouraging and supporting us. We are blessed to have such a great support system.