Wednesday, March 16, 2011

Laser Treatment #10

Yesterday was our 10th Laser Surgery at Children’s. Almost like a 10th anniversary, I felt like it should’ve been celebrated with balloons, confetti and some sort of discount. But no such luck.

I’ll be honest. I was completely, utterly dreading this trip. In fact, a few days ago I almost cried just thinking about it. I knew it was going to be hard in more ways than one. And since I’m a grown-up, I have to suck it up and make it happen, even when I don’t want to. I think Husband felt the same way.

In some ways it seems like it’s forever between laser treatments. In other ways it seems like we were just there. Even with the 6 month break we’ve had the last two times, it’s an all-too-familiar ritual of preparing to go (that actually starts two weeks out), the actual trip and surgery, then mentally and physically recovering. I am grateful for the opportunity to go. I am thankful our insurance will pay. I am giddy that one of the best doctors in the entire world is just three hours from us. But I am also weary of the whole process.

And it’s even harder now that Caedmon asks questions and is old enough to understand that he has to go through something he doesn’t necessarily like. He’s big enough to dread it, but not big enough to fully understand why he has to do it. This time, we’ve talked about his hospital trip and my upcoming hospital stay recently, and he got them confused. When we were in our pre-op room, he suddenly started crying. I asked him what was wrong and he said, “I don’t want to stay here.” We never stay. We’ve always gone home immediately afterward. But somehow he got the two hospitals mixed up and thought we were going to leave him there. It was heartbreaking.

And being 33 1/2 weeks pregnant didn’t help anything either.

So here’s how it all went down.

Monday, before I even got a chance to call the surgery center, they called me. That hardly ever happens. Arrival and surgery times were early (both a blessing and a curse), so we made our plans and tried to go to bed early.

We left at 4am Tuesday morning. It’s only our second trip since Caedmon has been potty trained, so we’re still getting used to traveling long distances with a kid who needs to go potty. We stopped an hour after we got on the road for a quick potty break. (I will go ahead and admit right now that I needed that potty break as much as Caedmon did. But he didn’t have someone punching him in the bladder.)

By the time we’d driven another hour or so, I was starting to have what I can only assume were Braxton Hicks contractions. If not, whatever it was, was weird. I drank more water. It helped a little. I ate something. It didn’t help. We were nearing the town where we usually stop for Husband to get coffee, so I took the opportunity to suggest that I needed to walk around a little. And by “suggest” I mean I might have said something like, “I am about to die if I don’t get out and walk around.”

I could barely get out of the car, but once I did, I started to feel much better. I might have done a few calisthenics in the Half-Caf bathroom to get the blood flowing. And while Husband was unhappy with my having to stand in line to get his coffee behind the only two people in the known universe who’ve never been to Starbucks and don’t know what they want, I was thankful for the opportunity to be on my feet for a bit.

Meanwhile, Caedmon had dozed a little bit but woke up when we stopped at Starbucks. He’d been fairly quiet, riding in the dark with the mandate that we were to rest. But with the sun finally coming up, he became a little more talkative and took the opportunity to tell us a few times that he didn’t want to go to his hospital. Great. And to top it off, our last 30-minute stretch was turned into 45 by insane traffic caused by the I-have-a-driver’s-license-but-don’t-know-how-to-merge phenomenon.

We still arrived at Children’s on time, but the waiting room was packed. We stayed out there for a good 30-40 minutes before we went back to a pre-op room, which is the longest we’ve ever had to wait. I’m not complaining, it was just unusual. Most of the time we barely get to warm our seats. I was hoping it was not a sign of how the morning was going for everyone.

Once we got into our pre-op room, things went fairly quickly. Vitals, pre-op nurse, and Laser Beam Doc’s Resident were all there within just a few minutes of each other. And ya’ll, we had the same Resident we had last time. The one I probably got into trouble. The one who wears a BYU surgical cap. (Doesn’t he know we are in the SEC?) The one whom I was sure looked at me and thought, “Yeah Lady, I remember you.”

But apparently he didn’t. Because again, we had to convince him that Caedmon’s face must be marked prior to leaving the pre-op room. There’s just something about that he does not want to do. And maybe he’s not practiced, because he really didn’t do a very good job of it, and even smudged it. Seriously…give me the green marker next time and I’ll do it. But I’ll give him props – he carried on a great conversation with Caedmon this time. Mr. New(ish) Resident mentioned that their first surgery had been canceled, so everyone had been moved up and it wouldn’t be long before they’d be ready for us.

Um, yay.


Except that Caedmon hadn’t had his Tylenol or Versed, aka Goofy Juice yet. And that Versed takes a while to kick in. So we mentioned it to Mr. New(ish) Resident and he said he’d send them in. It wasn’t too long before Ms. D came in to see us. How many times can I say we love Ms. D? And what did she bring with her? A green marker. I told her the Resident had marked Caedmon’s face this time, but that we’d had to convince him. She said she had written in Caedmon’s chart that his face must be marked before leaving pre-op. Apparently Mr. BYU doesn’t read very well. He also doesn’t check on meds very well, because when we told Ms. D that Caedmon hadn’t had his Versed yet, she said, “Uh-oh, we need to get that going quickly.” I didn’t tell her that Mr. New(ish) Resident was supposedly already on that. Why get him into any more trouble? This time, anyway.


We got our meds, but it was only about 10 minutes later when the surgical nurse came and said they were almost ready. She was a hoot, ya’ll. I can’t decide if she was Australian or British, but her accent was super fun. And she was so good with Caedmon. She recognized that he was upset (he’d started to cry but was burying his face in his newly-rediscovered Snoopy), and didn’t push him or try to force anything. She told the OR we weren’t quite ready yet and she chatted with us a bit while Caedmon got comfortable with her.

Finally we could wait no more. Caedmon was still crying some, but it was do or die time. Things weren’t going to get any better, and it was taking a sweet forever for that medicine to kick in. The surgical nurse sang silly songs to Caedmon as we walked down the hall. He cried when we hugged him goodbye, but when I put him on his rolling bed (a feature he’d previously told me that he wishes we had at home) and covered him with a warm blanket, he dried his tears and went like a big boy to the OR, Snoopy clutched under one arm.

He was back for surgery a full 20 minutes early. We thought we’d be out of there in no time. But we waited for 50 minutes before Laser Beam Doc was able to talk to us. We knew Caedmon had been in recovery for a while, thanks to the amazing guy who works the desk, so we weren’t worried. It was just taking her a while to get to us for some reason.

LBD said Caedmon did great, but she hadn’t seen the progress she’d hoped with using the Alexandrite Laser last time. She used the Pulse-Dye laser on the entire PWS this time. She also said she wanted us back in 3 months.

I almost choked. 3 months? In 3 months we’ll have a 2 month-old baby. I was planning on having a bit more time before we had to go back. As in, enough time for her to be about 5 months old and I would feel ok leaving her with someone while we made the trip.  But I suppose it’s not to be.

LBD explained that she felt if we don’t see much progress this time, it would be time to realize that his PWS is as light as it’s going to get, but we will only know that in 3 months. If she sees progress, she’ll “crank it up to 11” and we’ll go again. If she doesn’t see the results she’s looking for, we will switch to maintenance treatments every 6 months to 1 year. Sort of what I was expecting to hear. And sort of not.

They finally called us back to Recovery, where Caedmon had finally woken up and started on a grape popsicle. He was so loopy he could hardly get it in his mouth. Apparently the Versed finally kicked in.


I giggled uncontrollably a few times. It was funny to see Caedmon positively intoxicated by the medicine yet so intent on eating that popsicle and doing his darndest not to make a mess. His recovery nurse was wonderful, as they always are, and she doted on him while we waited for him to finish his treat so we could get ready to go.

Normally by the time we get dressed, he’s pretty much in his right mind. This time? Not so much. We finally managed to get him dressed and gathered our things and left. He was so excited that his promised chocolate shake at Chick-fil-A was soon to be realized. But his slurred speech was almost too much to take.

We drove back to our regular stopping place for some Chick-fil-A for lunch. And I actually had second thoughts about taking an intoxicated-looking preschooler with purple dots on his face into the restaurant when I saw three police cars in the parking lot. But I figured that since Caedmon was still wearing his hospital bracelet, our story might be believable. He enjoyed his chocolate shake…when he could manage to get the straw in his mouth. He was still a bit woozy. But still very insistent that he needed that shake.

The rest of the trip home was rather uneventful. I drove most of the way and was able to keep Mr. Braxton Hicks at bay. My back might be another story, though. I thought naps were in order once we arrived and got things settled. But it was not to be, for me and Caedmon, anyway. Husband was able to get a nap, but Caedmon was so wound up that he couldn’t even be still, much less go to sleep. And if he doesn’t sleep, I don’t rest. Part of being a Mom.

Bedtime wasn’t much better. Caedmon goofed off for a solid hour before he finally gave up and went to sleep. And even though I was sore and tired, I found it difficult to wind down too. Maybe it was the Chick-fil-A sweet tea. (If it was, it was totally worth it.)

Today we’re going to take it easy. Maybe watch our new Bambi DVD. Apparently we haven’t emotionally scarred him enough this week. Let’s bring it on.

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1 comment:

  1. I think we've got the same perception of some Arkansas drivers, ha! Glad C is okay, but I hate that he was upset! And Mr. BYU needs a talking to! Doesn't he know it's a pre-req to be super nice and attentive when working ACH?! Sounds like he's bringing the morale down!