Insomnia

Seriously. Why am I up?

Brody cried a bit at 1:15, then again at 2:15. The second time was because he was missing his lovey - aka, the plastic sippy cup. Yes, in addition to the monkey and 400 stuffed animals he has, he prefers the plastic water cup. Maybe he is afraid of being thirsty and that provides him comfort?

Except that, in light of past spilling experience, I just give the cup to him with about 1 T of water in it. He doesn't drink it, he cuddles it.

Now it's 4:15am. I'm UP. I have folded laundry, mentally cooked Thanksgiving dinner, filed my nails, and read a book.

I have a stressful 3 days at work ahead of me. It all depends how my clients testify - and since I can't control how they testify, I thought it would be useful just to sit up all night wondering what they will say. Yes, I know what they told me they would say. But sometimes, that changes when there is a court reporter nearby. At any rate, that's the reason I'm up. Also, one of our dogs snores really loudly.

Also, is it just me, or when you eat right before bed, are you famished when you wake up?

The pumpkin as usurper

We've been trying to get Brody to say "I love you" to us, but so far, he won't, unless we prompt him. He will say it, and he does it in this little sing songy voice. It melts my whole heart when he does, even if I know we had to prompt him to say it.

The day of Brody's surgery as we were driving to the hospital, we drove through a neighborhood that had many fall decorations on porches: pumpkins, scarecrows, corn, etc.

I hear him say from the backseat, as we drive by another porch of pumpkins, in that sing songy voice, "I love you punkin."

Success! Well, we think so. . .

I just got home from the hospital (9pm) and wanted to write a quick update before going to blissful sleep.

Everything went well. Brody cratered about the last half hour before surgery, but I think it was more because he was overtired (no nap) than no food. One of the nurses took him and entertained him while I spoke to the urologist.
I like the urologist (Furness) more and more. We sat down and he said "I've been thinking alot about Brody's case since we last spoke." He then went into this long expanation but basically, because Vacterl kids can have issues even when it doesn't appear they have issues, Furness took a different, more conservative, more complicated approach to do the same thing we talked about before, in order to avoid "making the bladder go to sleep." I was pretty tired at that point, and I don't really know what he said, but there you go. I knew Brody was his last case of the day, so I kind of joked (and kind of not joked) and asked him "Are you feeling good? Feeling fresh?" And he replied, "Actually, I've been looking forward to Brody's case all day." It was then I decided that I like a surgeon who thinks Brody's issues are fun and challenging, instead of daunting.

I walked Brody into the OR again. That just never gets easy, leaving him there, even if he is passed out. He was very glad that he got to take in his Oma blankie (what he named the blankie my mom knit for him) to the OR. Anyway, the surgery took less than 2 hours. Furness came out and cut right to the chase: "It went great. He's already peeing like a racehorse." No problems, no surprises, no issues. He combined the two urine tubes, and the reflux issue should be resolved. Brody will have bloody urine for a few weeks, and that's normal. He didn't get an epidural but a regional block thing. It should wear off tomorrow morning.

Brody did have a rough time waking up from the general. He was pretty violent and crying, and no matter how many times he squirmed or thrashed, he never got comfortable. He didn't care when Daddy or his nana arrived (Jeremy's mom) and he refused apple juice and popsicles (his two favorites after surgery). The nurse said it's a reaction to the anesthetic. Basically, after thrashing for 90 minutes, he went to sleep around 6pm, and as of the time I left, he hadn't woken up. He also hasn't eaten since 6:30am, but we have mac n cheese, rice krispie treats, cheerios and yogurt on standby in case he does wake up. He is getting so many fluids that he's not dehydrated, and he's not surprisingly just exhausted. I left him sprawled out on top of Jeremy in the "parent cot" (aka torture device) in the room.

thank you thank you thank you

Twas the night before surgery, and all through the house

It's the night before surgery, and Brody has just gone to sleep. As is our custom now, the night before a surgery Brody gets anything he wants to eat. That means tonight he had pizza, cheetos and a toffee covered popsicle. And 16 ounces of milk. And lots and lots of tickles.

I just got off the phone with the anesthesiologist. She called to do the pre-op consult over the phone. With Brody's complicated medical history, they are always interested (as they should be) about his tracheo-esophageal fistula (TEF) (the esoph didn't go all the way to the stomach) This is because for most surgeries, Brody is intubated, and every anesthesiologist gets wiggy about intubating TEF kids and kids who, like Brody, have an overbite. Thanks to one anesthesiologist at Shriners, who told me what to say, now I know to just tell the subsequent anesthesiologists that Brody has a big mouth. I don't know why, but after they hear that, I get no more questions and they seem much more relaxed.
The anesthesiologist also said that she may give Brody an epidural. Yeah, the same kind as when you give birth. She said it works really well, and helps because she needs to put in not just any IV, but a "really big IV." She said after this kind of surgery, they want to see Brody peeing a lot, and to do that, obviously, they pump him full of fluids.

The plan tomorrow is that we keep Brody at home, since he can't eat after 6:30am. Surgery is at 2:30 (mountain time). Tonight the doc said no clears after 11am, because they usually run early. That's right - early. So to be on the safe side, no apple juice after 11am in case they can take him earlier. I will wake him up at 6am and offer him everything in the house in the hopes he eats something. Keep your fingers crossed.

Brody and Jeremy will be staying overnight, then I'll take over again Thursday morning when Brody is discharged in the afternoon. Our awesome friend Stacy has offered to take Brody on Friday so I can go back to work (not surprisingly, Jeremy and I are both completely out of leave).

Now that you know the anesthesiologist story from above, you will appreciate this story even more: Tonight, Brody and I are sitting and cuddling, and eating our pizza. He turns to me, and puts his fingers in my mouth while I'm chewing. "Mommy . . . eat," he says. Then the little darling says, with his fingers still resting on my lips, "Mommy. . . big. . . . mowf." Jeremy, like many of you, just laughed and didn't say a thing. Of course, when Brody saw I was laughing, he just kept repeating "big mouth, mommy, big mouth." All I can say is that, obviously, (a) my son knows me well, and (b) the apple does not fall far from the tree. But the night before surgery, when I am most anxious, Brody knew to make me laugh.

This is the last you'll hear from me (hopefully) until after he's out of surgery. The surgery involves stretching and reimplanting those urine tubes, and is supposed to be over two hours long, which is one of the longest ones he's had. You know how I get. Jeremy is the voice of reason and tries to talk me off the ledge, since I'm worst case scenario chick. So please say some prayers and/or send good thoughts that Brody's surgery is a success and that he comes out of it safely.

Taking the fun out of dysfunctional

I understand no one's family is perfect.

I understand that in light of the family I do have, I am luckier than most.

But I just had a conversation with my brother that made me sad.

Sad because the first thing out of his mouth were racist jokes about the president-elect. I tried to steer him off of politics, and he kept veering back. Finally I told him our father would be very disappointed in him if he could hear what he was saying but that if he needed to make those jokes in order to feel better about himself, I guess he had to do what he had to do. Only then did he stop.

Sad because this was the first phone call in a long time between us, and the first one after I found out I wasn't invited to his surprise birthday party last month. And it was awkward. Of course, I was also sad because, like every other time I talk to him, I was fairly certain he was drunk.

Before I called him tonight, I received a letter from my brother that was a form letter, thanking me for participating in his 50th birthday party. (We sent him cigars). He thanked his wife, and two of my sisters, but not me (since I wasn't there) and not my other sister (who also wasn't invited). He asked me if I got the letter. I said yes. He said that's what he sent to everyone who went to the party, but a little different, because there were somethings that I just wasn't a part of.

That statement spurred me to tell him I was disappointed I didn't get an invite to the party. Because I would have come. He didn't believe me. Little does he know, I was checking flights and time off from work.

The invite never came.

I suppose I could have just flown out there, but I honestly never thought that for my brother's surprise 50th, I wouldn't at least get an email telling me the details. I felt odd inviting myself to his party. We don't agree on politics, or social issues, I think he's abusive verbally to almost everyone he knows, and there's the whole alcoholism thing, but I'm his sister. I'm his family too. And I should have been given the choice of whether or not to come to the party.

No, I have not been a perfect sister. Nor has he been a perfect brother to me.

But it's times like these I remember my dad the most. He held our family together. He always called everyone on every birthday, holiday; invited everyone to every party; we were one family with him at the head of it. My siblings out of state are my "half" siblings. My sibling in my state is my "full." We all share a father.

I never felt the distinction until after our dad died.

Now there's a dividing line. I don't know what I did that caused the rift. Maybe it's simple lack of attention on all of our parts.

But it's there. And it shows. And that breaks my heart because I miss my brother and sisters, and my dad would be devastated by the distance between us.

After he died, I found one of his journals. In it, he wrote "There should be less 'me' and 'I.' There should be more 'we' and 'us.'" He's still right.

Part of it is life stages. My oldest sister is 66. She has grandchildren. My other sister's kids are in college. I have a two year old son.

Part of it is differences in politics, and part of it is geographic distance.

But the rest of it is. . . something I don't understand.

And I don't know how to fix it.

Let it snow. . .

This morning, we woke up to see snow falling.

First snowfall of the year.

Brody is vibrating with excitement.

He ran from the sliding door facing the back to my lap looking out the front window, smiling "Snowman! Snowman!"

Jeremy said it was the first time Brody had seen snow. And I guess, in a way, that's true because he just didn't seem to care about snow last year.

Jeremy cautioned Brody that we needed more snow to make a snowman. I explained to Brody about snow angels. Brody even asked to wear a hat.

When I was driving into work about an hour later, I realized that without Brody, I'd probably be grumbling about the weather, the traffic, and the cold. Instead, I was happy and excited to watch the snow continue to fall.

And now I cannot wait for Christmas eve, when we leave cookies for Santa and carrots for the reindeer and read Twas the Night Before Christmas.

And Christmas morning, when the three of discover what Santa left for us.

Having a child is more fulfilling than I ever thought it would be. The biggest part of my joy comes from helping Brody to experience the fanciful and watching his eyes twinkle while he discovers whole new worlds. And he takes us on the ride with him.

So far, so good

Dante made it through the first 24 hours of MiBG.

Brody's reflux surgery scheduled for a week from today!?!?! I'm astounded at how fast this urologist, Peter Furness, can get us scheduled.

It's a sad state of our health care system that not waiting for months on end to get an initial appointment is surprising.