Monday, March 5, 2007

The lowdown on Isabella Chenchen's surgery ...

Surgery day came EARLY. The hospital called on Thursday and said that she could have clear liquids (water, apple juice) until 4:00 a.m. So .... we all got up at 3:30 (well, not Catherine), turned on a Tivo'd Curious George, and shoved apple juice at the poor kid. We explained we had to take it away soon, and she was a trooper and didn't complain when 4 a.m. arrived.

About that time, Catherine woke up and wandered into the living room, looking more or less comatose. She got milk in the kitchen (we're all eating out of CC's sight now!). The kids stayed in jammies, but D and I showered, and about 4:45 we loaded the car (with enough junk you'd think we were heading back to China), piled in, and headed to grandma's. CC was pretty clingy during this whole process, and we figure she understood what was going on and was a little nervous.

We got to my mom's about 5:30, dropped Catherine off (she, we later learned, went back to bed, much to the relief of my mom who is not an early riser), and headed to the hospital. My mom lives right near Children's Hospital in Austin, so we were about 15 minutes early for our 6 a.m. call (scheduled for surgery at 7:15).

They processed our paperwork and put armbands on me and Don (but not on Chenchen), and then we sat to wait for the nurse to call us back to the "Panda" area, which is where they take the kids' vitals. While we waited, CC lost her clinginess and played on the toys in the surgery waiting room, with her stuffed Curious George right beside her. Don and I sat, mostly comatose, as food and drink is forbidden in the waiting room, which meant no coffee (aaaaaghhhhhhh!).

Here are some pictures of Chenchen having a good time in the waiting room before we headed back:

So, not too long after 6, we were called back. They took us to a private room (not a curtained off area) and the nurse started talking to us and to Chenchen. She's the one who gave CC her armband, after checking against ours. CC was a little clingy at first, but soon warmed up to the nurse, who first brought CC purple jammies to change into. She then took blood pressure, temperature, and listened to her heart. She let CC do all those things, too, with the real equipment, and when she realized how into it CC was, she went out and searched out both a doctor hat (which CC made me wear, and a toy doctor kit).

Here are a few pics:

One of my major concerns with all of this has been attachment issues. CC has done so well attaching to the family, and to me in particular, that I didn't want to set that back by handing her off in terror to people who were going to take her to a small room and make her go to sleep, and then be the people she sees when she wakes up in pain. At the pre-op tour we took, we were told that the kids left the parents at the double doors leading to the surgery suite, and that the hospital did not use the "sleepy drink." The next day, I called and talked to a Child Life coordinator, explained the situation, and she assured me that "versed" – the sleepy drink – was available if needed, and that I should talk with our surgeon. I did, and he was fine with using it (and with having us in the recovery room before CC actually woke) but said it wasn't his call. He said we had to talk to the anesthesiologist, and since they work as a team, we wouldn't know who it was until the day of surgery.

So, on Friday, I mentioned all this to our nurse, who said that she thought the versed would be no problem, but that the recovery room was a decision for the charge nurse. She promised to ask.

A child life coordinator came by and gave CC an anesthesia mask to play with. We told her we had the versed lined up, but could she say something about the recovery room. She promised she would.

The anesthesiologist came by. He approved the versed and the nurse went to get it. He said he had no problems with the recovery room, but that was the charge nurse's territory. By this time I'm figuring we might not get a definitive answer (but thought it was looking positive).

While he's there, the nurse gives CC the versed, and thankfully lets her have a tiny bit of water to wash it down with (apparently, it tastes nasty!). VERY soon after, it's clear our 3 year old is quite drunk! The nurse gets a wagon for her to lay in, and she snuggles with Curious George and generally acts goofy.

The surgery nurse came by, and I went through my attachment/recovery room speech again. She said that one of the reasons they don't like to let parents back too early is that the kids look bad. I explained that I'd had surgery umpty billion times and that I had friends who are doctors and that blood doesn't freak me out. Plus, I said I'd rather be traumatized than have CC traumatized. She understood, and I felt positive about getting to go back (though still no definitive answer). Our surgeon came by, and checked on us, and then it was time to go. I carried CC and Don and I followed the surgery nurse to the magic double doors. I feared a bit of a tantrum, but she went willingly to the nurse, who wrapped her in a warm blanket. As a friend said, with the versed, she'd willingly go with Dracula. Yay!

Here's a little video taken about 5 minutes before they took her back. As you can see, when the staff describe the kids as "drunk," they mean it!

Here's what her palate looked like a few minutes before going into the operating room.

After she left us, the ick part begins. Because Don and I had nothing to do but wait. And wait. And wait. Surgery was scheduled for 7:15, and was supposed to take an hour and 15 minutes to an hour and a half. At about 9, I'm beginning to worry, and we go back to check. We're told they're still in surgery, but all is good. At about 9:15, they come and get us and take us to a consult room (where a television is mounted showing some really inane morning show, which reminded me why I don't watch morning shows). Our doc came in soon, and said that all went well and CC was in recovery. I asked if there were surprises since it took longer than anticipated, and he said they got started late b/c they didn't have the "mouth gag" he likes to use. I didn't ask what exactly that was!

We waited in the little room until the nurse came and said that one of us could go back to recovery. That was me, so off I went. CC was in there, looking pretty good all things considered. She had orange stain around her face, which I guess is disinfectant, and she had a doublestring coming out of her mouth and taped to her cheek (thankfully, our surgeon's nurse had warned us about that – it's a stitch that they put in so that if there's an airway problem while in the hospital they can yank her tongue out of the way). Her mouth was a bit bloody, but not bad. Her teeth were a bit bloody. She was just starting to wake up, and she was not happy. But it wasn't too bad. I did get a look at the inside of her mouth when she was crying, and it looked good. Bloody, but less icky than I'd expected, if that makes sense.

She saw me, but I'm not sure she was really all there yet. And then the nurse gave her some pain meds, and she was out again. And for a long time. The nurse said she thought it was the versed that was wearing off, and that's why she was sleeping so much. I held her hand and chatted with the nurse and a volunteer for about an hour, and then she started coming around again. THIS time, she was very unhappy about this whole waking up thing. She realized she was in arm restraints, and that's when the full-blown tantrum began. This was one unhappy kid! (For those of you new to the story, CC had a cleft palate repair. A cleft palate means that all or a portion of the roof of your mouth is missing, along with the soft palate that extends into the back of your throat. It's open into the nasal cavity, thus preventing kiddos from speaking properly, and early on, from eating properly. CC had a hard and soft palate cleft (roof and further back) along with a split uvula (sp?)). The reason for the arm restraints is to prevent the kids from poking fingers, spoons, etc into the mouth and messing up the work. They'd have to go back to surgery if they did, and that, frankly, would suck.

Anyhoo, the nurse was very sweet and let CC come to me, so I held her in my lap, tethered to her IV, with her face on my shoulder. (Thankfully, I wore a scrub shirt – great for writing in – b/c it ended up quite covered in bloody drool). We were there for probably another 40 minutes. At one point, CC fell asleep, but mostly, she had a tantrum. Not the worst I've ever seen, but by far the worse from her I'd ever seen. She did NOT like those restraints! And she was managing to get her fingers all the way to her face despite them. Even through all of that, though, she was adorable. I asked her if she hurt, and she said "no." So I asked her if she was scared, and she said "yes." This charmed the nurses soooo much!

No pics in the recovery room. It wasn't too icky – truly! – I just didn't think of it before she woke, and after that, I was too busy holding her.

At this point, I pretty much became a hospital patient, too. They got the room assignment and the "pain pack" from the pharmacy, so they loaded me into a wheelchair and got Don and we all went to the 4th floor of Brackenridge (which is the overnight section of the children's hospital until the new hospital is built this summer, thanks to Dell). We were put into a room with a little girl who was happier than CC and had also had surgery that morning. She was driving her mom crazy, though, but constantly getting down and running! No idea what she was in for.

The first few hours were a bit wild. CC was coming to terms with her arm restraints, especially after we switched her to the bigger size. She couldn't move in those, and I think the point of the things clicked with her. But the tubes were driving her nuts, and there was something not right about the way the IV was going in, because she kept getting occlusions and the machine kept beeping. Mostly, though, she slept – on me. Thus my feeling like a patient! She mostly dozed until about 2, when she decided she'd had enough of this sleeping thing, and overflowed her pullup onto my jeans. Stupid me, I'd brought another scrub top, but no spare pants. I ended up in Don's shorts.

About this time, CC was feeling up to going to the playroom, so off we went while the staff changed the sheets. When we got back, we learned that we'd been moved to a private room. Yay! I guess our beeping and peeing earned us a room to ourselves!

The playroom, by the way, was great. They had everything from baby toys to video games. CC played with everything and painted pictures (that we foolishly left behind). Sometime before all of this, D had gone down to get coffee and food for us (he ate in the hall. I had a bag of chips while CC slept) and he also got CC a little Curious George that she ADORES and a spy kit for Catherine. The toy store at the Children's hospital is, imho, the best toy store in Austin next to Terra Toys.

Anyhoo, back in our private room, CC dozed on and off, getting more lively with each nap. By evening, she was stir crazy, and we ended up walking the halls, to the amusement of the staff. Every IV rack we passed had to be noted and commented on. She'd point, then shake her head. Then she'd point to ours, and herself, and say "Chenchen." (I should point out that at this point, Don and I can hear that her sounds are "rounder" if that makes sense. However, there's no amazing recovery of speech here. She sounds pretty much the same. And I've also realized that a lot of what I thought she **couldn't** say, she just isn't saying. In other words, she never learned to say sounds instead of inflections. I knew that speech therapy would come after the surgery, so this is hardly a surprise. But it is a bit interesting, I think, how when a kid realizes she can't make a sound, she finds another way (intense inflections) to make the word understood, and that becomes "the" way. She has some serious unlearning to do. Of course, I may be wrong. Her mouth and throat are seriously swollen, of course. But she doesn't seem uncomfortable talking, so I think my take is pretty accurate at this point.)

Here are some pics of CC in her "no-nos" by the IV rack after our first walk. Amazes me how alert she looks for just a few hours out of surgery!

CC didn't get to eat or drink until quite a while after the surgery. When she did get food, it was apple juice in a bottle with a soft tube and clear chicken broth, which she gobbled down with a syringe. The jello that we tried to finger-feed her did NOT go over well. (It's really not good to be a picky eater if your only meal choices are soft or liquid ...)

Later, D went down to find dinner. Here is CC taking care of big Curious George. Note that we've put the original too-small no-nos on him!

The afternoon and evening was a typical hospital stay. Because I was tethered to CC, I couldn't work on my computer. And she's the only child in the world not interested in television, so we didn't watch that either. Thank goodness I had a book to read for a quote (Blood is the New Black. Really enjoyed it!! Vampires in the fashion world! As you can tell, I still have to work on the quote part, but I'll def'ly be praising it!). I balanced the bound manuscript on Big George and laid there reading while my kiddo slept.

About 8, D and I were both exhausted (which comes from getting up at 3:30) and we decided to crash. Of course, sleep was near impossible since the staff had to come in to check on CC about every hour. She was getting oral meds in addition to the pain pump every four hours, and they were also coming in to check vitals and to loosen the "no-nos" for circulation. They'd come in, she'd wake up. I'd wake up.


The next morning came early. As in, CC decided after the 4 a.m. rounds that it was time to get up. She didn't care that it was dark outside or that the halls were quiet. She wanted UP. So we did the hall walking thing. While we were walking, her benedryl kicked in. (I forgot. Apparently, morphine makes people itchy, and I guess it's more pronounced in little kids. But because she couldn't scratch, she was one frustrated munchkin. FINALLY she managed to communicate to me what she wanted – though at this point I had no idea her eyes itched; I thought she wanted tears wiped, and she couldn't understand why I kept stopping when the tears were gone! Finally we worked out a system where I'd put a washcloth on my chest and she'd press her head against it and roll her face over it. Whatever works!)

After our morning jaunt, she took another snooze until about 8 for which I was sooooo incredibly thankful. After that, we had some more hall walking and then some Mei Mei on my computer (her DVD of Chinese songs) until the playroom opened at 10. About that time, the doctor doing rounds took her off the IV – yay! – so she was able to play un-tethered. MUCH easier, believe me! And then our doc came by and said she could go home, and he took the stitch out of her tongue. I hesitated about posting a picture, but I'm using this blog as a memory book for CC (I'm way too disorganized to keep some notes elsewhere!) and as information for other parents of kids going in for cleft surgery. And since it's not gross (I don't think) here's the picture. CC was VERY happy when it was out of her mouth (though it really didn't bug her nearly as much as I think it would have bugged me!)

Anyhoo, while the discharge paperwork was being completed, Don packed and CC played. And then we said our good-byes, got a spare pair of no-nos, and headed for the car, CC and her animals being pulled in one of Children's wagons.

I took a pic later of the inside of her mouth after the surgery. So here's a pic of the results of our ordeal:

I need to ask the doc exactly what he did so I can explain to CC when she's older. I'd expected a row of stitches down the middle of her palate. This seems to have a horseshoe shape of some white stuff, which I'm not sure if it's tissue or synthetic bone filler or something. Will report back after the follow-up!

We got Catherine, who did GREAT at Grandmas and was so happy to see us, and us, her. CC had been asking about her sister every time she woke up, but by the time we got there, she was coming due on pain meds, so CEK didn't get to see just how excited CC was to see her big sister. The ride home helped, though. The traffic was a nightmare, and so CC got to take a car nap. By the time we were unpacking, she and CEK were bouncing off the walls.

Here's a still picture.

You might notice that CEK is wearing no-no's, too. They decided that would be a great idea (and though CEK only wore hers about an hour, I think it added to the 5 year old empathy factor).

So that pretty much takes us to where we are. CC is doing great, but I foreseen intense food boredom in her future. She is PICKY. So far, she has been eating only vanilla yogurt, strawberry Danimals, apple juice, and chicken noodle soup, drained of all but broth. We've tried a bazillion other things, including chocolate milkshakes. What kid doesn't like chocolate milkshakes????

Sleeping hasn't even been the problem that I expected, although I've laid down with her until she's fallen asleep, which I don't think I'll do for the whole 2 weeks. No return of the night terrors or anything, so that's great.

And when we take off the no-nos (for circulation and so she can play better at times) she's very, very good. And she doesn't complain when it's time to put them back on. Go CC!

So that's it. We're doing good! Thanks to everyone who sent good wishes!


Tori Lennox said...

Sounds like she did awesome, all things considered. :)

Ellen said...

Thanks for sharing all this, Julie. Glad it went so well. And your family knocks me out. I was sniffly through the whole account, but really broke down when Catherine put on the no-nos.

So happy for CC and the whole gang!


Julie Kenner said...

Thanks y'all for the support! She's doing so great, but will be SO happy when she can have goldfish again :)

Amelia Elias said...

Julie, this is so awesome. Since I moved away and left ARWA, I've completely lost track of everyone, but now that I've found your blog I'm definitely checking in more! (By the way, Gavin still loves that super-soft dog you sent him when he was in CHOA and refuses to use a regular pillow--Murphy is his pillow. *smile*)

What beautiful girls you have! CC is a doll. The "drunk" video is hilarious--reminded me of when my oldest boy had his tonsils out and woke up on morphine. He'd start to suck his green popsicle, raise it to his mouth, forget what it was, then just stare at the melting drops running down the side... kids are hilarious!

This might not work--heaven knows my Bryan's picky as heck--but maybe cheese soup and tell her it's liquid goldfish crackers?

I'll be sending healing thoughts your way. Take care!

Julie Kenner said...

My comment email thingie isn't working right; sorry for leaving your comment hanging so long. I'm so glad Gavin still loves the doggie! That's so great.

Thanks so much for the nice comments about my kids. It's amazing how great they're doing.

Glad to see you're doing so well!! Austin misses you!

dancer4thelord said...

Thank you for all the pictures and story. We are considering a waiting child with bilateral cl/cp nothing repaired yet . It is really scary to think of all the surgery she will need. I feel like I had a walk thru and now I will be Ok about it. She looks wonderful and seemed to recover very quickly. Blessings, Cindi

Anonymous said...

Julie - I can't thank you enough for this blog. it's 11pm in Raleigh, NC tonight and my wife and I will be getting up at 4am tomorrow to go thru this very thing. Our daughter is 2.5 and has a similar cp as CC. Anyway - I just want to thank you and the effort - the pictures, the detailed recounting - it's made us feel a lot better about what is gong to happen tomorrow. Also reminded us of some things to remember - the extra clothes, and the favorite stuffed animal to name a few. Thanks thanks thanks. best of luck to you and your beautiful family.

raleigh, nc

Julie Kenner said...

Roberto, you are so welcome! Good luck with the surgery. Best of luck, and I hope your little one comes through it like a trooper!