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Wednesday, December 5, 2012

Scar tissue excision surgery

The much anticipated and much dreaded scar tissue removal and EGD is over. I feel like it's silly to even call it a surgery because it was such a minor thing, but I guess it technically was a surgery since it was done by a surgeon and there was cutting involved. :) We were at the hospital for 6 hours yesterday and overall it went well. Here's our day in pictures. (because let's face it, when you're at the hospital for 6 hours alone with a 3 year old who was not even with you for 2 hours of it and was passed out cold for the last 2 hours of it, you get bored and take pictures)

She was ca-RABBY as heck when she woke up yesterday. It was a complete contrast to the day before when she'd been so sweet and wonderful all day. She got upset when I dropped Kaida off at a friend's house and started saying that she wanted to go to Lily's house. Lily is her little friend who has spent about as much time in the hospital as she has out of it, and sadly, Raya thinks that the hospital is Lily's house. I told her we were going to the hospital and she got excited that we were going to see Lily, but then when I told her that Lily wasn't at the hospital, she got upset and cried off & on for the whole 45 minute drive. It was sweet that she wanted to see her friend but sad that she thinks the hospital is where her friend lives.
We checked in just before 9:30 and the crabbiness continued. She was being super bossy, yelling at me about silly little things, and instead of enjoying the dozens of beautifully decorated Christmas trees on display, she was mad at them. Especially the Dr. Seuss themed tree that had the Grinch's bum and legs sticking out of it.

When we got to the surgery waiting area, I let her out of the stroller and she got a little happier. She jumped around on the color-changing floor tiles and ran laps around the stroller. I think everyone around us was probably happy when we got taken back to pre-op.

She didn't like being in pre-op. She didn't want her blood pressure taken, she was mad that I took her shoes off but left her socks on, she didn't want the hospital-issued slipper socks on (I didn't blame her, they had tiny ones and huge ones and nothing in between), and she didn't want to sit on the bed. She thought I was going to try to make her take a nap or plug her into her feeding pump. They let her pick out a stuffed animal on the way in so she was happy about that, although you'd never guess it from the look on her face. :)

Because we were on time, we ended up with about 90 minutes to kill before her procedure. We spent most of it in the pre-op playroom, which is much smaller (or at least it feels smaller) than the old pre-op playroom. It echoes too. Raya had a great time playing. She even interacted with a couple of other little kids while we were in the playroom. She was cute and sweet and charming.

The surgeon's assistant, anesthesiologist's nurse, another nurse, and the surgeon all came and talked to me while we were in the playroom. Raya wanted nothing to do with any of them, especially when the surgeon wanted to see her stomach. Then she played some more and got happy again. Then we had to go back to her room and all hell broke loose. It was 11:25 and her scheduled time was 11:30. I told her to put the little plastic thimbles from the Trouble game back into the box. (ironic, I know) She was moving SOOOOOOO sllooooowwwwwwly after 2 hours of being patient, I was reaching my limits. I started to help her, she started to scream, I hurried and threw the rest of them in the box, she screamed more, I picked her up to carry her out of the room, and then she let out ear piercing shrieks that could take paint off the walls and kicked/hit/wrestled with me all the way to the room. It was lovely. After that, she kept throwing fits in the room until the nurse came in again.

The anesthesiologist came in to talk to me for a few minutes but I can't remember if it was before or after the versed. I think it was before. I really liked him. The nurse came in at 11:35 to tell me that the GI doctor was running late and that we could give Raya her dose of versed to help calm her down before they had to take her back. It was then that I realized I didn't have an extension tube with a med port on it. Oops. Luckily they had luer lock syringes on the unit and they fit perfectly into a straight port extension tube. Crisis averted. Then the real fun began. It turns out that Raya's body does not like versed. She's had it a few times before and been totally fine with it but this time it wasn't pretty. For starters, she threw a FIT when I tried to connect the extension tube and give it to her. The nurse had to help me pin her down. Good thing we weren't doing anything involving needles. Once I gave it to her, I was supposed to keep her from hurting herself as it took effect. The problem with that was that she didn't want me to touch her. She wanted to play on the floor with the little truck full of giant legos. The nurse had told me it would take about 10 minutes for it to start working. I kept waiting and hoping that it would start to calm her down but it didn't. I was afraid she was going to hurt herself so I kept trying to get her to sit on my lap or sit on the bed with me. I think she started to feel funny so she finally agreed to sit on the bed with me.

She started to lose motor control and got really floppy, but stayed angry. I let her play Angry Birds on my phone and for a couple minutes, she was happy. She had one fit of hysterical laughter, which in turn made me laugh uncontrollably because let's face it, drunken laughter from a 3 year old is funny.

It didn't last though and she got angry again. She kept getting mad at me for trying to help her but she kept pushing the pause button and clicking on ads. Then she couldn't control her hand well enough to make the birds fly so she asked me to help her. During her drug-induced loopiness, we started talking about her new teddy bear and I told her what its name was on the tag. She said, "Iss not Klauss. Dass not da tebby beh name!" I asked her what it was and she said, "Iss Dr. S." (her GI doctor) The GI doctor was running 40 minutes late so instead of having 10 minutes of trying to keep her subdued & happy while we waited for them to take her back, it was more like 45, and that was after I'd already been wrangling her for 2 hours.
After I chatted with her GI for a couple minutes, the nurse took Raya from me to carry her back to the OR. That did not go over well. Raya started freaking out. It's one thing for a kid who is totally alert and in their normal mental and physical state to freak out, but to have a kid whose mind is clouded by a sedative and whose motor control is crap because of the sedative freak out is really hard to deal with. She's strong as an ox but was like a 30 pound angry wet noodle. She was thrashing around trying to make the nurse let go of her, which would have injured her. Finally the nurse handed her back to me for a minute and I carried her out of the room and to the doors that parents can't go past, which was about 5 feet away from our room. Then I HAD to give her back to the poor nurse who got to take my kicking, screaming, floppy wet noodle of a 3 year old to the OR. I could still hear Raya screaming all the way at the end of 2 hallways when I got to the doors of the waiting room. It felt pretty crappy parting like that.

I can't remember now who came out to talk to me first but they all said that everything went well. The anesthesiologist said that we should not ever give her versed again because she'd had a paradoxical reaction to it. That just means that it had done the opposite of what it was supposed to do, hence the floppy but combative and agressive wet noodle child. He said it 2 or 3 times that we shouldn't do versed, so goodness only knows what happened once they got her into the OR. It must have been pretty wild. She has a history of waking up from anesthesia like a wild animal so he gave her clonidine to help her sleep past the anesthesia drugs.

Her GI said that everything looked good on the endoscopy end of things. She said there was a lesion under the G tube balloon that was likely the cause of the intermittent bleeding we keep seeing. There's not much we can do about it though. I don't want to switch back to a MicKey and I don't want to go back to a non-balloon button, so we'll just do carafate for a while to heal it and go from there. She said that she took a whole bunch of biopsies to see if there are any eosinophils anywhere and we should have those results back in a week or so.

The surgeon said that things went really well with the scar tissue removal. There was a lot of thick, fibrous tissue built up around her stoma and he cut it off and cauterized it. We had talked about maybe needing to change the size of her tube but he put in the same size she had and it seems to be fitting nicely. It's a little disturbing seeing your kid in a drug-induced sleep, completely relaxed and sprawled out but at the same time, it's kind of nice to see her SO relaxed and getting a good rest. I don't think she gets good sleep as often as she needs it.

When I went back to the PACU to see her, she was still out cold. The nurse had left the oxygen on her because he didn't want to disturb her and risk having her wake up badly.

She ended up sleeping for a solid 2 hours in PACU before she finally woke up, thank you clonidine. :) She woke up really well this time too so that was nice. The first thing she did was pull the O2 sensor off of her toe. She said, "I don't like this. I want it off." and took it off. :) Then for the next 10-15 minutes, she was awake and then asleep and awake and asleep and every time she woke up, she pulled something else off.

Once we had her IV out and I had started her on Pedialyte, we were ready to go. She could barely hold herself up but she still insisted that I let her climb into her stroller by herself. Little stinker. On the way out of the PACU, we had to stop and wait for someone to walk us down to the pharmacy. The PACU nurses had made themselves a lovely Christmas tree out of an IV pole and garbage bags and I thought it was fabulous so I had to get a picture of it. :)

We went downstairs and got her Tylenol+codeine from the pharmacy and then I thought it would be fun to look at some of the amazing Christmas trees they had on display. Their facebook page says there are about 60 trees on display throughout the hospital. Unfortunately Raya was in no mood to look at them. She liked them but she wanted to touch them and kept leaning over to try to grab things, which she didn't quite have the motor control for.

Since she wasn't into it, we left. She insisted on climbing into the car by herself too. That's frustrating enough when she's NOT fresh out of anesthesia & still dosed with clonidine. Finally we got everything in and I started the car. I had to text a couple of people to let them know that we were leaving and I thought she had fallen asleep again. Then she said, "Will you just go?!" Made me laugh even if she was being bossy. :) Right after that though, she did fall asleep and I had a nice peaceful ride home.
She was still really sleepy when we got home and laid on the couch until about 5:00. Then she got up and ate a couple of marshmallows. I changed the gauze on her stomach and was surprised to see the funky looking bruising all around her tube. I had noticed it at the hospital before we came home but I thought it was just blood that needed to be washed off or something.

There is a HUGE difference between how her stoma looked before and how it looks now. Just for a refresher, here's the stoma before:

And here's what it looked like last night:

Crazy!! That was some big ol' scar tissue. Comparing the before & after definitely makes me feel better about doing this. I was feeling pretty bad while we were waiting for them to take her in, wondering if it was the right thing to do. There is a pretty big likelihood of her forming new granulation tissue and having the scar tissue come back but I don't think it will be as bad as it was before. We just need to keep it clean & infection free while it heals and pray that it heals well.

She threw up a couple times last night so I decided to keep doing just pedialyte for the rest of the evening. From the amount of pee that was in her bed this morning, I might as well have just poured the pedialyte straight into her bed though. Holy smokes I've never seen that much pee on the outside of a completely saturated diaper before!! She woke me up at about 5:45 and I could tell she'd been laying in it for a while so I cleaned her up and she was awake for the day after that. She's been getting half formula and half pedialyte all day today and it seems to be going well. She ate Fritos for breakfast so there'd be something in her stomach with the Tylenol+codeine and it seemed to help. Except that it does NOT make her the least bit sleepy. She's pretty sore and a little grumpy but seems okay. I'm glad it's over but I hope it heals without problems.

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