deja vu 3--Home!

After almost a week in the hospital, Nate was discharged today and we are home. This week was bizarre and scary and stressful, but I choose to see the blessings in it.

I want to document our last couple days in the hospital. Warning--I will try to be discreet, but there will be some talk of bodily functions. If you don't have children, you might want to avert your eyes. :) But it's not just gratuitous pee and poop talk, it's actually a neat story.

I mentioned in my last post that Nate was having bladder pain--this pain was far worse than back pain, and that's just not right. There were several times when Nate was crying because of the bladder pain, and we had to cath him. For those not in the SB world, that means to use a catheter to empty his bladder--not like a foley catheter that stays in, just in and out and done. Many kids with SB need cathed regularly, but Nate has only needed it for certain medical procedures in the past. Poor guy was in so much pain that he was begging us to cath him. He was sometimes not able to empty on his own. But why? After talking with Urology, we came up with a couple of theories.

1. Nate has been very, very constipated since the first detethering surgery. Even when we were home, one night he was having a lot of stomach pain, and we were taking lots of measures to make him more comfortable, but they didn't work well. The second surgery didn't help any. Anesthesia, narcotics, laying down almost all the time, plus the normal SB stuff that causes constipation all conspired against Nate. Constipation can actually cause lots of problems with the bladder, including pain.

2. I think after any surgery, some people have a hard time emptying their bladder because the foley catheter irritates stuff in there. So that could be part of it, only that should be over after the first day.

3. This is just me, but I think he has increased sensation in his bladder since the surgery. So maybe that increased sensation is confusing and scary and might make a full bladder feel more painful?

4. The neurosurgeons and the urologists thought his bladder might be in a bit of shock after the detethering. Some of the nerves that were worked on do affect the bladder, and sometimes they are just in a state of shock for a couple of weeks and then start working again. This is the theory that they all went with. They explained there is a small possibility Nate would never regain the bladder function he once had, but they thought it would come back in a couple weeks.

So the plan was to get him un-constipated ... and to start cathing him. Cue dramatic music. Now, like I said, I had requested that the nurses cath him a few times because he was so uncomfortable. But it's quite another thing (somehow) when a doctor tells ME that he MUST be cathed every 6 hours. Remember when the guy mentioned the shunt earlier in the week? Well, this isn't quite the punch in the stomach that was, but it's probably the only thing secondary to that. Except that it's temporary. He wanted me to wait until Nate pees, and then cath him. But I told him I didn't know how I was going to do that, because Nate is incontinent and wears a pull up, and I don't really know the moment when he pees.

Okay, so for the constipation, we had been doing suppositories, and then they decided to do an enema. Which did nothing. Frightening. A pediatrician mentioned a Go-Litely treatment that involves a tube down his nose? Uh, what's Plan B? I suggested a Miralax clean out. And I don't make that suggestion lightly, because they are not fun. But they work. So we started filling the kid full of miralax and just waited.

In the meantime, I was supposed to learn how to cath. I was being brave. I can do this. I know lots of people who do this, and it's no big deal, and I've already watched 2 student nurses learn how to do it on my son (don't get me started on the student nurses) so if these little girls can do it, so can I.

So here's the kind of miraculous, awesome part of the story. I was getting all my supplies ready to cath him, and Nate tells me, "Mama, I have to pee!"  !!!  Nate NEVER tells me this. He has told me this twice since his surgery. He could feel that he needed to pee! So I say, go ahead, baby, pee! And he peed in his pull up. Then the nurses come in and I tell them what he just said, and then I did it--I cathed him like a pro (and it didn't hurt him). And guess what. NOTHING came out. Not a drop! He had totally emptied his bladder by himself! Yes!

This was just a cool thing to discover in general, because I never really knew if he emptied his bladder completely. He's never had a UTI or kidney reflux, and his bladder always looks healthy, but his urodynamics have always been a little inconclusive. We always thought he was emptying, but we never really saw it. Until now.

At this point they had already started ordering me cathing supplies and getting me gloves and making a discharge plan that included me cathing him. But now I don't think he needs it. So I went ahead and did the next two caths anyway (midnight and 6am) and got very little out--like not enough to trigger the sense that you need to go. This morning, all the doctors agreed that we did not need to cath him after all. I brought some home just in case he started having pain again, but we think things are working just fine. And now that he can tell me he feels like he has to go ... potty training?

Throughout the night, we were making some progress with the constipation, and this morning about an hour before discharge--Kaboom. That's all I'll say.

So Nate is feeling much better and is really not having any pain, unless I am moving him around and his back is sore. He is on regular Tylenol and Ibuprofen and that's all for pain. He has not yet sat up since the surgery on Tuesday. Dr. Tulipan wanted him to lay flat for about another day. Then he can get up as needed, but he wants him laying down most of the time--sort of like modified bedrest--for the next 3 weeks. (Bring back the dramatic music.) He won't be going back to school for that long either. So far we haven't had too much problem keeping Nate laying down--I think he's afraid to sit up--but he's going to start feeling better very soon. I'm anticipating fights tomorrow.

The outpouring of support, encouragement, and help has been incredible, and humbling actually. I have this resistance to accepting help, but I'm trying to let go of that. I need help, and people like to help (I know I do) so I'm letting them and really appreciating it. When we got home today, my mother in law was here cleaning the whole house. What a nice gift to come home to a clean house instead of a mess. My friend Kellie has organized a meal schedule, where several friends have signed up to bring dinner to the house! How incredibly nice is that? Not having to worry about cooking or cleaning frees up way more time to take care of Nate. Aunt Kathy sent two big boxes of awesome donuts from The Rolling Pin. Blake's boss gave Nate a Nintendo DS and some games and a game card to keep him busy! My parents came to the hospital on Tuesday and stayed the rest of the week, even though it's hard for my dad to take off work, and my mom was just here with us for the last surgery and away from home for a week. And that's not mentioning the cards and meals and gifts we have received from family and friends over the past 3 weeks. It makes a girl feel loved, and it it's even better knowing how much everyone loves Nate.

Nate has really taken all of this probably better than I would have. He gets grumpy sometimes, but that smile is never too far from the surface. Even when laying in a hospital bed, he gives us lots of his wonderful giggles. He may have gotten a little spoiled with all the attention. Tonight he was asking Blake to get him a train or something, and I guess Blake was taking too long because he said, "Why aren't you doing what I tell you?!" :) Georgia has very much missed her mama. She called me twice this week to say, "Come! Home!" From a 2 year old? Heart-breaking. But Blake did a great job of taking care of her (I raised my eyebrows at some of the outfits he picked out, but other than that ...) and she has really gotten closer to Daddy through this, which is a good thing. Now I can't get enough of her, but she's too busy to let me hug on her all day. I'm just so glad to be back under the same roof.

We all have our day-to-day stresses and annoyances and urgencies. But it's experiences like this that help me see the big picture a little more clearly. I keep going back to the two best pieces of advice I've ever gotten, both from my Granny.

1. "God first, then family, then everything else."
2. "If it can be fixed with money, it's not a real problem." In other words, don't sweat the small stuff. Our families and our health are what's important, and the rest of it just isn't a real problem.

Now I'm going to get some rest, and we're going to try our best to stay away from Nashville for as long as possible.