Tuesday, March 24, 2009

We're Home!

We're home from the hospital!

I'll give you a rundown of the past couple of days, as I see that Jer was a little skimpy on the details. We got a phone call yesterday morning at about 8:00 letting us know that there'd been a cancellation and our surgery time had been bumped up so we should bring Connor in as soon as we could. We threw ourselves and Connor into the car twenty minutes later, and were at the hospital by about 9:30. Jer's mom met us at the hospital armed with a balloon the size of Connor's entire body, and so we paraded back into surgical services. In the surgical prep area we stripped Connor and Monkey down and they both received ankle bands, a wash-up and gowns. Monkey's gown was made out of a paper towel and not nearly as nice as Connor's, but since I have yet to find enough free time to sew hospital gowns for a stuffed animal, we had to improvise. Then Connor and Monkey disappeared into the surgical area and we headed off to eat some lunch and wait for the doctor to page us and tell us the surgery was over.
Connor, by the way, was not upset about the upcoming surgery. Connor was upset that he was wearing shoes but no pants. We'd put the shoes back on to keep his feet warm, and this was apparently Against The Rules. "Sad, pants! Sad! Please, pants, please!" he kept signing. Also he didn't like the nurse's paper hat. Given some of the wardrobe choices I've made in the past, I'm not sure how I managed to raise a fashion critic. Maybe it skips generations or something.

After about two hours they paged us to tell us the surgery was over. The doctor sat down with us in one of the little rooms off the surgical unit and told us that everything had gone very well, though they'd hit a couple of snags. The first was that they'd had a little trouble intubating him-- it took a couple of tries, so his throat was probably going to be pretty sore. The second thing was that Connor has what's called pectus excavatum, or funnel chest, and so his ribs fall in such a way that the doctor had to make the incision to get to Connor's stomach much closer to the place where the g-tube comes out than it would usually be. Other than that, everything went very well. Shortly afterwards, they asked for me to come back to recovery as Connor needed comforting. They only allow one parent back at a time per HIPAA laws, as the room is open and has a lot of patients, and also to reduce the risk of infection. I followed the nurse back to recovery.
Connor, still pretty out of it due to the anesthetic and the morphine, was trussed out in arm restraints on the bed. Apparently he was upset enough he'd decided that breathing was optional, and whenever they took the oxygen mask away from his face his saturation levels plummeted. I told them that I'd watch his arms, and so we took him out of the restraints (which, I might point out, are a sign-dependent child's worst nightmare as they render the child unable to say anything) and I sat down with him in a rocking chair and the combination of me signing, rocking, and another hefty dose of morphine eventually got him to calm down. Jer snuck in and we bantered back and forth about how a non-doped up Connor would enact revenge on us and all of the doctors and nurses who had perpetuated this outrage upon him. We figured it would involve hired packs of assassin ninjas, or baring that, a judicious application of teeth to any body part within reach.

The recovery nurse was kind of interesting, by the way. She was very nice, but she started asking me questions about how I was "feeling about all of this-- not just the surgery, but just dealing with everything" and expressed admiration and amazement that Jer and I had not divorced because of having Connor. I didn't really know what to say to that, because the implication was that having Connor should be a tragedy, the kind that ends marriages, and to us having Connor is a joy. She gave me a huge bear hug as I was leaving, which was a little awkward for me, but I kind of patted her on the back and shared a raised-eyebrow look with Jer over her shoulder. I suspect the nurse thought she and I had shared some sort of intense moment together and I needed comforting, which was a little strange given that Jer and I were not only completely calm the entire time, but cracking jokes. Oh well.

Since Connor still didn't want to breath without the oxygen on, we ended up with a nasal cannula and they moved us to a room. Once we were settled in, Jer headed off to the house and left you all yesterday's extremely detailed report. Connor began phase one of his revenge plan by becoming nocturnal and also periodically expressing how he was Very Sad by holding his breath and causing all of his alarms to go off as a result, and so his Mommy got very little sleep.

Jer drove back up to the hospital in the morning, and by the afternoon Connor was completely off the oxygen and morphine. He was also much more chipper and communicative, playing a little bit with his blue Gertie ball and periodically patting his tummy near the g-tube while shaking his head "no," whenever he thought we didn't look sufficiently guilty at doing this to him. Nobody asked for his opinion about whether or not he thought a g-tube was necessary, but he was making it unequivocally clear what his answer would have been had we asked. It's hard to be two. Nobody asks your opinion on any of the important stuff like that.

So we were discharged around six in the evening and are now home. Connor is fast asleep, hooked up to his pump for his first ever nightly feeding, and I'm looking forward to playing a half-awake game of Rock, Paper, Scissors at five in the morning with Jer over who gets to go turn the pump off when its finished.

The little guy is doing just fine.



Mary Lorraine said...

I'm glad the little one is alright, if a bit perturbed at the whole situation. Sorry I missed your call last night. I was in class with the phone on silent. Anyhow, more love sent to the Connor-man.

Zanda said...

Hi jessie, glad to hear all went well! And Connor should get a medal for enduring all of that! ;o)
How's Monkey?

Julia O'C said...

"It's hard to be two. Nobody asks your opinion on any of the important stuff like that."

You're a good mom.

Julia O'C said...


...hospital gown for stuffed animals found here!!!

Anonymous said...

Glad you're home!!!!

It's interesting that when people think you're not reacting the way *they* would in a similar situation, they think you're holding back and that they're magically going to be able to turn you around. She has no idea what you have been through. She has no idea the ups and downs you have been through as a family, as an individual, as a parent. BUT, she was trying to reach out and be nice. I *guess* she should ged credit for that?!?!?!?

Greymare said...

I'm so glad to hear that everything went well, and that Connor is being such a trooper for you. :)

skeybunny said...

I don't know why I'm surprised that Connor is just now getting a g-tube. I guess because my kiddo has one, I just figure everyone else does too :)

One piece of advice I would like to share with you: doctors and nurses don't know as much about gtubes as they would like you to think. Hmmm...I think that advice applies to rare syndromes also :)

My favorite example of this was when Jeremy and I asked about "venting" the tube (Evan also had a surgery for reflux at the same time they installed the gtube that makes it impossible for him to burp or vomit--he had really bad reflux). We asked how we would know when to do it. The answer we got: "Oh, you'll just know." They made it sound like it was something we would need to do like twice a year. Poor Evan suffered through at least 2 weeks of nightly boughts of "colic" before his clever parents thought of trying to vent the tube. So much for parental intuition...

So my advice...don't be afraid to vent the tube. Sometimes what comes out is gross (I find the gross factor is substantially decreased if I just refer to it casually as "stomach contents"). We seriously vent the tube 4-6 times per day (again--different situation than Connor's, but still a far cry from "occasional")

iceehot said...

I'm so glad that C is home and that all went well, for the most part!! I hope C heals up quickly and that you find the g-tube to be helpful.

My daughter had a PEG initially and recently had it switched out to a Mini-One. If you have any questions about anything, feel free to ask. The nurses definitely don't tell you nearly enough. Also, make sure you have plenty of extensions. My hospital sent me home with 2 that were supposed to last 3 months. They started getting clogged, and come to find out I should of been getting a new one every WEEK.

Colleen said...

Glad the surgery was a success! Sorry about the interesting nurse who doesn't understand what an amazing joy Connor is to your family.

Connor's Mom said...

Mary: That's okay! Hope class went well. Talk to you soon.

Zanda: Monkey is up and demanding bananas.

Julia O'C: Awesome-- thanks for the link!!! That gown might be a little big on Monkey, but that's okay. He'll grow into it, right? Um...right.

Mia: You're right-- I think she was trying to be nice, and I'm probably being too mean to her by complaining about it. I certainly don't think she meant any harm.

The problem was that she seemed to be very unsatisfied when I told her that Jer and I were perfectly fine with the idea that we had a special needs child- she kept saying "but how do you REALLY feel" because apparently I'm actually horrified by it but afraid to tell anyone or something. She also obviously felt very sorry for Jer, Connor and I, which made me a bit angry. Pity is not an emotion I think any parent of a special needs child wants to have directed at them. I think that this along with the repeated expressions of amazement that Jer and I didn't have marital issues was why it made me mad. Oh well. I should probably cut her some slack.

Greymare: Thanks, Miss. Sorry I didn't call you back today. I'll try and call tomorrow evening.

Skeybunny: Thanks for the advice!
They talked about doing a Nissen for Connor too-- I'm assuming that's the surgery Evan had, though correct me if I'm wrong-- but in the end decided he only needed the g-tube. He can still burp, so that helps. The nurse in the hospital actually read the care sheet out loud while she was telling us how to take care of Connor's tube-- she'd never seen a Malecot before and she had to call the doctor to make sure it was the same instructions! We've already experienced the geyser effect during venting, though. Exciting!

iceehot: Thanks! It's so nice to have other people we can talk to if we have questions!

Connor's tube right now doesn't need an extension as it's really long, but his Mic-Key will need one. We use a new bag and tubing for him every day-- they deliver them to our house, which is kind of cool. I'm especially excited about how our insurance now covers his Pediasure. That stuff gets expensive after a while.

Colleen: Thanks!

AshleyS said...

I'm so glad everything went well!!

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