Tons-hell

I did not anticipate that Patrick would start fighting in the operating room, sobbing and pleading with me not to let them near him. I did not anticipate that they would not come and get me before he regained consciousness; so he woke up alone and frantic and by the time I got in there his eyes were swollen and red with misery. I did not anticipate the choking or the fact that the anesthesia made him claw at his face with his hands. I did not anticipate that he would be desperate to cough but be unable to do so and as a result he struggled for air until his face was dark purple and the veins on his neck stuck out like cords. I did not anticipate that he would vomit in the parking lot after being released, showering the side of the car with every last bit of the rainbow-colored popsicles he had obediently consumed despite having zero enthusiasm for them. And I did not anticipate that he would proceed to throw up repeatedly in the car or again at home... or again or again or again.

Fortunately, you had warned me about all of these things and while I was not truly expecting any of it I was somewhat prepared for it. As Patrick cried in the OR I remembered the comment Sarah left about how hard the same thing had been for her and her child. When he woke up in misery I was reminded of what Isa had told me about the choking and the blood and how it would get better as the anesthesia wore off. And Gina and Jennifer, to name just two, had warned about the nausea and vomiting; so I had brought in my purse a big Ziploc bag lined with a paper towel or two, as well as a stack of wipes and a change of clothes for Patrick. Cris had told me that outpatient means anything less than 24 hours but can mean as many as 23 and she reminded me how important it is to bring your own pillow if you are sleeping at the hospital. So I packed a just-in-case overnight bag and I remembered the pillow. It served a dual purpose because Patrick saw the bag with the pillow and asked about it as we were leaving. I said the plan was to come home after the surgery but any number of things might happen to change that plan and I wanted to make sure he had a lot of special things from home in that case. Patrick thought that sounded reasonable. We didn't need it but we had it and I was glad.

All of which is to say: Patrick had a hard day, I had a hard day; however, the blog comments that I had received prior to this hard day made it better for both of us - significantly, measurably - and I am  more grateful than I can say for your generosity in sharing your experiences.  

I made the BONEHEADED decision not to wake him up at 7:30 this morning for his next dose of tylenol with codeine. Yesterday he was not able to fall back asleep afterwards and I thought I would let him wake up on his own this time (I still woke him up last night at 11:30 and 3:30... why is it that they can make regular tylenol taste like bubblegum but the addition of codeine tuns it into battery acid? Patrick keeps wanting to punch me in the middle of the night.) When he finally got up at 10:00 he said his throat hurt. It was the first time in recorded history that he has ever said this. I think we can conclude that Patrick either has an insanely high pain threshold or he has diminished nerve function in that area for some reason. I asked him to rate his pain on that nifty hospital 0-10 scale - immediately after the surgery he was at 3.5, last night he was at 1/8. This morning after almost seven hours without pain killer he hit his all-time high of FOUR. I gave him more medicine and he ate a bowl of sorbet and another one of oatmeal. He seems to be eating better than ever although he obviously feels terrible. I guess giving him carte blanche was all he needed to be an enthusiastic diner.

Despite the, what, two hundred comments you guys left all more or less saying that the first couple of days can be very rough, I am surprisingly overwhelmed by this whole thing. Patrick is being... there are no words to describe the mood he is in. Awful? Godawful? That's during the day. At night he is pitiful and still sleeping in our bed. Yesterday afternoon he curled up in there around 4 and slept until almost ten. Then he was awake until one in the morning; I starting reading him Ribsy and did not even notice when he fell asleep and I just kept reading. Yes, last night I stayed up until 2 am reading a Beverly Cleary book - and not even the sublimely good Fifteen or the slightly less good but still ok Luckiest Girl. Nope. Ribsy. 

I feel drained and tired and I hate listening to Patrick's raspy breathing and watching him dissolve every five seconds.

So I have got nothing funny, nothing...

oh wait.

BEFORE surgery Patrick was in rare form.

My mother was flying in while he was in surgery so the plan was that she would come from the airport directly to the family waiting room. The nurse asked if I was alone. Patrick answered for me, saying yes, for now. The nurse said, oh who else is coming? Patrick said, well, if she (pointing at me) were me; then her (pointing at me again.)

I said, what?
The nurse said, what?

Patrick sighed and said, my mom's mom is coming.

++

The ENT asked if he has any questions.

Patrick said, "Yes. In your office you said you had removed 8000 tonsils. Was that 8000 individual tonsils or 8000 pairs?"

"Pairs," she said promptly, "so 16000 total."

"Have you ever removed just one tonsil?"

"Almost never and then only if the patient was already missing the other one for some reason."

"Have you ever considered removing half of each tonsil?"

"No."

"Did you just tell my mommy... my MOM... that you would probably remove the adenoids too?"

"Yes."

"But I have never had an issue with the adenoids before!"

"Actually you have. Your file shows that your adenoids were severely inflamed during your hospital stay. Also, removing the adenoids does not increase surgical risk or recovery time while keeping them in does increase risk of future illness. So if I think they need to go while I am in there I will take them out."

"Are you trying to kill me?"

"No. I have never killed a kid. Never. It is not happening."

"OK," said Patrick.

++

The anesthesiologist asked if he had any questions after telling him that he was going to "take a little nap" after breathing "some goofy gas" out of a "cool fighter pilot mask."

Patrick asked, "Do you still use ether?"

"Uh, no actually we use [long name] but it is a great great grandchild of ether. That and nitrous oxide to help relax you."

"Why did doctors stop using ether?"

"Well, the two major reasons were the incredible risk of fire associated with ether and the difficulty of controlling the dose."

"Did people used to wake up during surgery?"

"Uh, yes, I have heard that they did."

"Will I wake up during surgery?"

"No way."

I said, brightly, "Is nitrous oxide a combination of nitrogen and oxygen?"

"NO," said the anesthesiologist and Patrick in unison. Patrick looked mortified and said, "I think we're done here."

++

If I could I would curl up in a ball on your living room rug. This suuuuuucks.

In the meantime I am working through all of the non-traditional households stuff. THANK YOU. Your response was exactly what I was hoping for and I should have more than enough material once I interview gobs of you to write something interesting. It is, by the way, tentatively slated for January but I'll let you know when we get closer.

Speaking of writing, I have another request for interviews. This article is dear to my heart (for obvious reasons): I am looking for stories about close friendships that started online or, as my editor put it, ways that women have been able to use the internet to "find their own tribe." For me the starting point was infertility/pregnancy loss but I know there are about a billion other little subcultures out there and I would love to hear about them (as well - don't feel like you are being redundant if your friendships started with infertility too.) So if you met your very best friend or close group of friends through blogs or message boards or chat rooms or mailing lists or... YOU KNOW... and feel like talking to me please let me know. Send me an email or leave a comment. I am really looking forward to this one.

I know there was something else but... meh. I need to get back to Patrick. The eating is ok but he only seems to drink anything if I am sitting next to him offering sips every other minute.

This is hard. Hope you are well.

PS I got to use my voice recorder last night. It was totally cool.

PPS I just asked this at Scrambled but... any protein suggestions for a kid who hates eggs?

Comments

[Lisa]

Oh, Julia. I hope it gets better. We were able to be with our son when they put him under for an upper/lower GI. It was very traumatic to see him lose consciousness, it was like seeing him die. Last year, he had influenza and it was a terrifying experience even though he was 14. He was so weak and it was hard to want to help but not be able to help. I'll keep you and Patrick in my prayers.

[Kathleen]

I hope you all are feeling better very very soon!

[Beth]

Oh, honey I am so sorry it has been so hard. It will get so much better from here, though. Hang in there.

[Marsha]

Oh, poor kid. I had my tonsils out when I was 5 years old and remember the aftermath as the single most painful thing that has ever happened to me. That I am now 40 and have had two children (natural), spine surgery, an ACL repair and suffer migraines should tell you something.

It's really that terrible. My parents felt so awful about it that I as able to finagle a swing set out of them. Maybe you could guilt Steve into a sandbox by way of recompense for Patrick?

[Bethany]

I just wanted to tell you what a great Mom you are, Julia! Your kids may never know how lucky they are, so I thought I would tell you for them.

[Helen]

Poor Patrick! Sounds like you are doing great (even if it doesn't feel like it), sorry you can't take the pain away. We will be sending good & soothing thoughts his way.

[liza]

Oh, poor Patrick and poor you.

Protein -- tofu? That's what my egg- and dairy-allergic daughter has for lunch every single day. I just give it to her in slices straight from the carton but there are, obviously, a million different ways to cook it. And you could put silken tofu in a smoothie if Patrick is into smoothies.

[Sara]

Oh man. Poor Patrick. Well, at least he'll never have to have his tonsils out again!

Protein--My daughter practically lives on tofu. We usually saute it with something to give it a taste, but she might well eat it raw, given a chance.

[Bekki]

I didn't want to write this before the surgery, because I thought it was mean, but I think you can laugh a little about it now.

I had my tonsils out at 6, and woke up from the anesthesia with my mother next to me. And I actually remember this 23 years later, started screaming at her "I hate you, how could you let them do this to me?" Then I drank some warm 7-up and was fine. My mom was forever traumatized though, and I will not let her near me if I'm sick or in the hospital for fear I'll have some sort of similar reaction.

I was feeling much better 2 days later. Best wishes for a speedy recovery for your sake and for Patrick's.

[Aunt Becky]

It took about a week for me (and I was *gasp* older by a magnitude of a decade) to get better. Hang in there.

Having had 2 kids through surgery (1 major brain surgery, the other a mere walk in the park hernia surgery), the hours after your son woke up will be forever seared into your brain as some of the worst of your life.

Hope that you're all feeling up to snuff (whatever THAT means) soon.

[Adrienne]

I always enjoy your writing but I often feel like I have very little to contribute to the conversations in the comments--I need to get through medical school before we can start thinking about babies.

(Actually, I think about babies almost incessantly, but that is another slightly depressing story about my biological clock!)

ANYWAY...I got very excited reading this when I saw your bit:

"I said, brightly, 'Is nitrous oxide a combination of nitrogen and oxygen?'"

You were right! You made a lovely contribution to the conversation, and shouldn't feel bad about it! Nitrous oxide is N2O; it is a great weak surgical analgesic and anaesthetic.

Knowing something tangentially relevant kind of made my day :)

[Kristin]

High protein meal replacement drinks...if you toss them in the blender with some ice and a banana, it will be just like a smoothie or a shake.

Hang in there, the first few days are the worst.

As for finding your tribe online, I have a couple of great stories. Two women I refer to as my sisters by choice were people I met online.

[JuliaKB]

Oh, this sounds traumatic. Poor Patrick, and poor you. But I totally got his little charade to the nurse. Hope he is feeling better soon. And that he doesn't develop any funny reactions to codeine. I did, about 3 days into it, this past spring. I was literally feeling funny-- buzzed and a bit light-headed, and not confident in my ability to operate motor vehicles. Not that the latter skill is anything Patrick has to worry about, but I was feeling funny enough and my sickies were better enough by that point, that I opted to stop the codeine-powered med.

And I am more than happy to help for the article-- I literally found a whole tribe online (and later co-founded an online meeting place for that tribe). A sanity saver for sure, since it's not exactly common to meet bereaved parents in the course of one's everyday life.

[Amy B.]

beans!

[karin]

Patrick pre-surgery made me laugh out loud. I'm glad he's going to be feeling better, even if it's tough in the interim!

As for your request for interviews, I'm a part of a group of friends that all met through a teen girls website when we were, well, teen girls. We've gone through a number of iterations (website changes, sub-groups separating off, etc.) but those girls (and a couple of guys) are now some of the closest friends and definitely the most long-term friends I've ever had (I've known a couple of them for literally half my life)

I'll answer any questions you have, and if you're interested, I can make sure that everyone's cool with it and get you access to our forum where you can talk to everyone.

[Elizabeth]

For the non-egg protein: what about soybeans? We get the frozen edamame (I think they're technically mukimame or something like that) and add them to veggie stir-fry's but have fed them alone to the kid, with great success. Also, you could sneak it in with the protein-loaded pasta, that's what we do when have a meal without protein in other form.

[Kimmyann]

My son had surgery when he was 10 months old. I will never forget that when they came to tell me that surgery was over and he was waking up in recovery ...I was able to find him without getting directions because I could hear his screaming. It took me another 30 minutes of rocking him and giving him a bottle to calm down.

[Carrie]

Oh man. That sounds HORRIBLE. I only know about tonsil removal from the POV of a kid and I don't remember it being like that. Of course, I don't remember much of my childhood.

All my best friends are from online. I moved to Sweden in 2001 and started a blog. I made my best friends in the ex-pats in Sweden online community. Plus, I have a bunch of really good friends from my book club forum. I met my husband there. Five of our online friends were in our wedding, including the officiant who got one of those internet ordaining things.

I would be happy to talk to you if that sounds interesting enough.

[rose]

Hi Julia

My dad has throat cancer and I've been making him cream soups (veggie soups) but cutting up little cubes of chicken and cooking them in the soup. Then when it is cooked I use the immersion blender. Even my dad, with throat cancer, can eat this.

[MustangSally]

This is why I'm so glad Mr. Stang took the Monkey for all his vaccinations. I couldn't take it after the first round.

Protein...smoothies with yogurt and protein powder? Then Patrick can play mad scientist and help you "concoct" them in the blender. Also, seems like a great excuse to eat anything with melted cheese. Could he handle fondue? Fettucine Alfredo?

[Becca]

48 hours post-op almost always brings a big improvement in how you feel. The next big jump will probably be at 1 week for him, given the nature of the surgery.

Does he like peanut butter? You could make peanut butter smoothies or the no-bake peanut butter balls that are basically peanut butter mixed with powdered sugar and formed into balls.

I met my best friend online. I have aspergers, and making friends in person was always incredibly difficult for me. The internet let me meet someone with similar interests and made the communication easier, because all I had to interpret were words, not facial expressions. Feel free to email me.

[Amie]

Awww, poor Patrick. I hope he is feeling better soon and back to his usual self...I love hearing (ok reading) stories about him!!

As for your second article, I met my close group of friends online...we are all surrogate mothers or intended parents (who are all now parents because of surrogate moms) and we are very close. We rent cottages together and go on camping trips together, ect. I would love to help you out with your article and I'm sure some of them wouldn't mind if you need them to as well. :)

Lots of healing thoughts for Patrick!!

[Kristen]

My son has an unusually high pain tolerance, at least during an illness, if his brother touches him, it's like he's being run through with a knife. Anyway, I once took son #2 to the dr for a strep test only to find out son #1 had tonsils so swollen they were practically touching & a double ear infection. He'd said not one word...

Some of my dearest friends I 'met' during our adoption process. I've met a few in real life but mostly we keep in contact on facebook or our yahoogroup. And of course, blogs.

[Leandra]

I should have posted this beforehand and didn't and for that I am terribly sorry. They can give patients something as they're coming out of anesthesia to stave off the nausea. At least they did for me when I had my second c-section and told them how sick I got with my first. I mean, I guess they could do that with kids and why DON'T THEY? Especially with a tonsillectomy and the throat being so sore!! Egads.

Hope Patrick's feeling better soon. A friend's son just had his tonsils out recently and I'm afraid to say that it took him almost a week to get back to normal. Don't despair! :)

[Colleen]

make smoothies out of silken tofu, or after the first few days when he can have dairy again, soy milk... Carnation Instant Breakfasts (they even have a low sugar kind now) go great into smoothies or even just in milk, and have quite a bit of protein too.

[Emily]

You sound like a wonderful mom, Julia. Hang in there, and all my best to you and Patrick.

[N]

I'm sorry he's doing so poorly, and hope he feels better soon.

I met my wife online! Among most of my friends, both far away and close.

[sueinithaca]

I have a good friend who LOVES silken tofu with sugar sprinkled on top. I politely disagree, but it is a protein source which is not eggs. Oh, and hummus. Mmm.

[Lawmommy]

I'm so sorry. It really was a horrible experience for Gabriel and I'm sorry it has been awful for Patrick.

(Lana also woke up before they came to get me and her hysteria was terrifying to see. I explained to the nurses that she had lost two mothers before me and I was quite furious that they didn't consider that when they waited until she was awake to come get me.)

I have made some very close friends through my adoption blog - I have met several of them. I have one friend who lives on the other side of the country, although we met once, but we email all the time. I wish she lived closer.

[claire]

Julia please give my sincerest sympathy to Patrick. I myself spent all last week in hospital for an ectopic pregnancy and woke up in much the same state after my surgery. To the point that I told the first nurse at my side to cancel the elective sinus surgery I had booked for later in the year because there is no way in hell that I am ever putting myself through an anesthesia voluntarily EVER. It fucking SUCKED. All I wanted to do was crawl out of my skin. It was the worst. The codeine that everyone keeps insisting on my taking is making me feel really, really sick too. Yuck, yuck, yuck. But on the upside, I'm a nursing student and think this is definitely going to make me a better nurse.

[Robyn]

Best Wishes to Patrick, the poor little genius. He deserves to feel well!

[haitian american family of three]

"are you trying to kill me"

HAhahahahaha!!! Oh that made me laugh.

Feel better! Both of you.

[Pam L]

I am so sorry Patrick is having such a rough time. I really don't remember that my experience was that bad, truly. And I remember many details so I'm thinking I was fairly OK by day 2-3. Poor kid!

[Nancy]

Wow! Patrick is the only person on earth who understands the pain scale, and at such a young age. I am VERY impressed.

[Sally]

I really hope he recovers quickly. My parents packed us up and took us on a long car trip about 5 days after my brother got his tonsils out. It was a disaster. So don't do that and you'll be fine. :)

[Rachel]

So sorry to hear Patrick had a rough wake up and early recovery! I hope he's feeling better soon. I remember dreading with every fiber of my being when I had to get my wisdom teeth out but it really helped me to remember (and it's the same case with tonsils) that they can only be taken out ONCE. You will never ever have to go through that with Patrick again.

I've had three surgeries in my life that required being put under anesthesia (a hernia at age 10, my wisdom teeth at 21 and laparoscopic endometriosis removal surgery in April) none of them were fun, but thankfully no experiences too traumatic.

I agree with the other commenter though, the first thing I did in April when I went in to pre-op was swallow two pills to combat post-op nausea and gas (from the lap). The doctor also gave me more anti nausea meds before I woke up as a precaution and I didn't have any problems at all. Why can't they do that for kids too??

I hope he's feeling better VERY soon!

[iheartnewyork]

oh my god, your kid is a hoot. "are you trying to kill me?" hahaha! you are a great mom, I'm sorry this has been so tough. my almost 11 year old son had surgery three years ago and it was AWFUL when we saw him in the recovery room, writhing in pain and crying. gah, I'll never forget that. he doesn't remember it, but I sure do. his first couple of days post-surgery were lousy. just remember, this too shall pass, it will get easier and less sucky. hang in there!

[Jessica]

Our little guy (now 8) still has tonsils, but had to have his adenoids out when he was 2, after about a year of near-constant sinus infections. It sounds like maybe adenoids aren't as bad, but it was still a couple of the worst hours of my life. Hope he starts to feel better soon!

As far as online communities, an overwhelming majority of my close female friends either I met online (though a MUD-think old-school, text-based online gaming) or met some of our guy-friends online, and subsequently married into our group.

[Jill]

Poor Patrick. And I know this is hard on you too. I hope he mends quickly.

Hummus.

[Lisa]

Your description of Patrick's surgery reminded me of my son's surgery in May - horrible! Despite asking a million questions I was so unprepared!

As to protein, I am assuming you are looking for a soft form of protein right now. I suggest ricotta cheese. Add a little bit of pureed fruit (peaches are particularly good) or applesauce and cinnamon. Or warm the ricotta slightly and mix it into some very small pasta (pastina or acini di pepe) with a little bit of butter and salt. I grew up eating pastina and acini di pepe - always made me feel better during my many, many bouts of strep throat.

Hope Patrick heals quickly.

[Natalie]

I am so sorry you're having a rough time. Post op sucks, not matter the age. Hang in there!

I met my best friend (Mike) online in a chat room 13 years ago. I was married, he was engaged. Our friendship was 100% platonic. We saw each other through births, deaths, divorces, and all things in between in the first 10 years of our friendship - all via email & instant messenger: no phone or in person visit. After 10 years, we were both single and able to meet in person. Two years ago, his girlfriend and I became friends (again, via email & IM) and feel now like we've known each other our whole lives. I literally could not live without either of them. (I live in Texas, they're in Michigan.)

I also have a group of friends from an online forum that I have been a part of for about 6 years. In 2005, I flew to Boston to meet a large group of these people that I'd never met before, just knew on the forum. One of the guys on that forum that I haven't ever met in person has become one of my very best pen pals - again, one I couldn't imagine my life being complete without.

I'd be happy to speak to you, if you've any interest in my story.

Seriously though, I promise that tomorrow or the day after, Patrick will wake up and feel so much better, this unhappiness will be but a fuzzy memory.

[kris]

i forgot that connor puked in the parking lot after the surgery. i was expecting the puke because there is no way you can swallow blood (and i believe you kind of have to swallow blood after tonsil removal) and not puke. he only puked once though. he did however develop a fever of about 105 the day after surgery scaring the living shit out of me. he also had an issue with low oxygen level in recovery scaring the shit out of me and hubby and all the staff there...(too much pain meds which they gave something to reverse which had him standing up screaming like a lunatic...) i never want to experience any of it ever again but the 4 months of continuous strep prior to the tonsils coming out made it all necessary. why dr's aren't more truthful with what the whole thing is really like is beyond me. knowing what to expect makes it easier to get thru then being totally freaked surprised by all of it. as for friends online...have a few great ones met in adoption email groups and then more great ones made thru dog groups(breed specific ones). also, does patrick like miso soup...add extra tofu for the protein...

[Carolyn]

I'm so sorry to hear it was that rough. I hope it continues to get better and I'm glad he didn't have to say overnight.

One thing I remember with J was that he apparently had been snoring before the surgery and a week or so afterwards, maybe just days, I went to check on him and completely freaked out that I couldn't hear him breathing (read: snoring). I woke him up and made him talk to me to calm down. I still checked he was breathing for a while after that but with less, ah, invasive procedures.

So, be aware you may be used to hearing Patrick breathe loudly and once things heal you may not.

Loved the comments on ether and nitrous oxide.

[Heather B.]

Well if you're looking for someone who is a non-mom who met her closest friends (who happen to be moms) on the Internet then I'm your girl.

[Annika]

Oh man, I met like 90% of my friends on the internet. Most of them on a message board for Buffy the Vampire Slayer fans. A lot through my blog, too, and a couple on Twitter. Twitter! I think the best story I've got is probably the girl who found my blog because we were getting married at the same place within a few weeks of each other (not a traditional wedding venue). We emailed back and forth for months, lost touch for a while, then got back in touch when we hired the same midwife. We finally met in person at a knitting group, at least two years after our initial email. Which is kind of crazy since we live less than three miles apart.

And if you want to meet a couple who met through their blogs and got engaged via blog comment, I can hook you up.

[bethany actually]

I'm so sorry it's been so rough. I don't have any personal experience with tonsillectomies but I've heard those first couple of days can really be killer. It WILL get better. I'll keep you guys in my prayers and think happy thoughts for you!

I have made several good friends through the internet. But if someone asked me to list off my closest friends of any kind, Brenda (AKA Secret Agent Josephine) would be one of the first people I'd mention. I started out purely as an occasional reader of her blog around the time her 3.5-year-old daughter was born, and over time went from occasional commenter to real-life friend. We used to live on opposite sides of the country, and now we live 90 minutes apart from one another and see each other all the time. In fact, right now I'm on vacation and she's at my house feeding my cats and watering my plants!

Almost all of my good friends in the area where I live now are people I met online, via blogs or Flickr, long before we moved. I used to be a little embarrassed when talking to people about my "internet friends" but I'm not anymore. I've met so many of them in real life now and have realized that these people really ARE my friends, whether I've met them in real life or not. As Brenda says, when we were kids we became friends with someone because they happened to live on our block or sat next to us in homeroom. Making friends online should be much more effective because it's not based on proximity, it's based on shared interests.

[drgretch]

I hope that Patrick gets well soon and I am sorry that he is feeling so miserable right now. Instead of eggs, how about very thoruoughly cooked udon noodles? I know that they have a good protein content and if they are "overcooked" maybe the texture would be OK for his throat. Take Care-

[C.]

So sorry about Patrick. It will get better, I promise.

I met my best friend 6 or 7 years ago on a message board for cheating significant others. The situations passed but we now are great friends and talk everyday.

[Leta]

Nothing is worse than watching your child suffer and not being able to do a damn thing about it. Thoughts are with you.

[Bea]

Dude. Wow. Good luck with the rest of the recovery.

Protein - have you tried silky tofu mashed with fruit?

Bea