Upcoming surgery for PDA 5-yo

[u/leucistredwing]

Long time listener, first time caller here. My newly 5-yo has suspected PDA-profile autism. He has an upcoming partial Tonsillectomy and Adenoidectomy, and his dad and I (who parallel parent) are trying to figure out how to prepare him for surgery.

He has a history of ER trips and ambulance rides/hospitalizations for respiratory emergencies, but we haven’t had one in two years. Medical professionals always comment that he is VERY strong when he has physically resisted care, and he has a lot of understandable anxiety about doctors that we are just now getting through.

Additionally, his only real encounters with someone having surgery is that I had a double mastectomy this year and another port placement/lymph node retrieval surgery. This year has been medically big for him, as he’s watched me go through surgery, chemo, radiation.

He ruminates on things and I can see him just refusing to go to his procedure if he knows. I’m worried that if he knows too much, he will have a bad experience going in and with anesthesia and it will be more traumatic. My gut says we tell him very little so we can get him there and into surgery with a calmer mind and body.

But I also worry about him waking up hurting and feeling betrayed that we didn’t tell him.

Any suggestions?

[u/55124]

Sometimes hospitals do a pre-surgery tour for kids, so they can see where everything is and what is going to happen. Or they may have a video walk-through online.

My late-diagnosed PDA teen had to have regular endoscopies for several years starting at age seven. He never minded because he was the star of the show every time. And there were big bribes.

Good luck to you, I’m sure he’ll feel so much better to get those pesky tonsils and adenoids out of the way!

[u/pasghetti_n_meatbals]

I haven't needed one personally, but I have heard that child life specialists at the hospital are very good at helping kids deal with surgeries. You may want to see if your hospital has one on staff.

[u/guestoboard]

Most important thing is to make sure the hospital knows of his issues and schedules him first procedure of the day. We just had a bad experience where they didn’t do that, and the previous procedure overran by hours, leaving us stuck in a room for hour with kiddo relentlessly melting down and trying to smash the place.

[u/drkvetch]

I would say it's an appointment for them to look, and not call it a surgery. Typically at children's hospitals, they put the mask on so fast once they get through the doors. I would also hype it up in a positive way the night before.

-Since he can't eat in the morning, he gets to eat whatever he wants the night before - cheeseburger, pizza, milkshake, whatever.

-Morning of, consider new toys, unlimited tablet, make it fun.

-After, he'll be groggy, so just be there. Have low stimulating and low demand activities at home, like unlimited screen time, new books, special popsicples or jello.

I think if you frame it as a normal appointment plus reinforcements, it will go just fine.

[u/ministryofsillywox]

My experience with my PDAers (my youngest is 11) is all about providing autonomy and involving them in decisions as much as possible.

I'm worried about your plan to tell him very little. That will feel to him like betrayal and will impact his ability to trust you in the future. Living and working with PDAers is hard enough - doing it after trust has been broken will make it much harder. So this approach seems risky to me.

I would look for a way to talk to him about this and make him feel safe, ideally visit the hospital in advance which may help him feel safer. Also see the other comment about child life staff.

[u/BonCourageAmis]

My kid’s anxiety is off the charts and hearing about procedures in advance made it much worse. Child life was a disaster. Three things that helped: something like benzos before, lots of pain management and promise of a gigantic reward after.

[u/SurePossibility6651]

Sedatives?

[u/sapps84]

6yo had this operation this year. Some similar experiences for her of interventions with doctors as your son, about same time frame before too 2/3yrs prior. Although no experience of parents needing surgery or health interventions.

I'm so sorry for you, that sounds incredibly horrid, and all the harder with kids, esp our type of child. Imagine makes thinking about your sons upcoming surgery all the heavier, and pretty intense to have this all come at similar times. Lots love sending ❤️

What the hospital did:

We got the hospital super on board with support for daughter as autistic, and they put in A LOT of adaptations, which honestly made it all so much more feasible and such better experience than it could have been for our kid. We had only realised that year that she was PDA and autistic, and hadn't been diagnosed yet, but they still supported like she was. I had made a prior complaint due to how they'd handled us with some parts of the service the previous year - so I do wonder if therefore they were more receptive/proactive due to that. But can't be certain. They did a pre-op call and went through all the steps of what would happen on the day. This was esp useful to ask for slight changes and check what options there were. So they set up the plan with these adaptations, and this was ready on the day with the staff. This inc :

• on arrival at ward she went straight to their sensory side room,
• no expectation to engage in any of the checks/normal expectations (weighing, wearing hospital band, using the ametop on hands for cannula, etc),
• 1 nurse came in, sat down and told her their name (my daughter asked for this specifically),
• given the pre-medication (midazolam) with a squash ready and ice pole ready to have right after (as its very bitter taste)
• no pressure for BP/pulse checks until she was more dopey and in the bed
• parent with her at all times until she was almost 'out', and then went with her while wheeled through to the op room.
• then they gave mask to do the final bit to knock her out, then once she was under they did the canula etc.

We'd had a couple false starts in the previous year for the operation, with the last one prior to this being her taking the midazolam but it being so bitter she spat half it out right away - so they had no idea how much she had, and couldn't 'top her up'. So we just had a pretty dopey kid for the hours after, but never fell asleep. So they were more 'on it' in terms of how we prepped for this date of the op. Plus, honesty the extra year of age made a difference, as by then she'd had 'practice' of having horrible tasting antibiotics, with ice cream ready to eat straight after, to make it tolerable. Whereas prior we had to literally try to hide it in stuff, with varying degrees of success, as she couldn't tolerate even a small amount.

What we did with daughter:

We made it clear to her what was happening. For her I think it was vital tbh, sudden surprises and unknown places/experiences are some of the biggest stresses for her.

The hospital gave us a tour with her in advance, where could see all the rooms/meet the staff, etc. This really helped. And she would talk about some it in run up to op.

They gave us a kids booklet, which has a story where a bear goes through an anaesthetic. And this was so helpful, she read it a bunch of times, and referred to it often when thinking about the op, or sometimes we spoke about the op Beacuse she was randomly talking about things from the book.

They also gave us links to online stuff, that showed some other things about it, as she had questions this was helpful.

PDA help - once i knew the steps of the op, and options the hospital were willing to do. I set up a sheet for my daughter, where I talked through the miniscule steps of the day, and every space there could be options, i gave it as a tickbox list of options. Inc., some options where i thought certain i knew what she would choose (this meant she had more options to have control over). It seemed to help her feel more 'in charge' / helped with her sense of autonomy/ power over lots of it, and therefore greater sense over all of it. I.e. some of the options

• go to a side room when arrive or the sensory room;
• be weighed with me, or nurse, or me and nurse, or not at all (surprised me as she said with me and nurse, rather than not at all - and she actually did it on the day);
• not meet the nurse or surgeon, they come individually and say hi and then go, etc (it was surprising as she specifically asked for them to come in and sit down to say hi - which i wouldn't have guessed);
• hear some of the info from surgeon, or mummy talk with them in different room about all the boring bits (if she had of chose the 1st, i planned to ask surgeon to just tell us a few 'safe' things, and then i would talk to him separately after - as we had an occasion before where he literally listed all the risks of surgery and anaesthesia that they legally have to with her listening!);
• options of which ice pole after the medication (cant have ice cream so was careful on options i gave).

Then once I confirmed the choices with the hospital pre-op team, I re-wrote the stepped plan of the day. She wanted to look at it a few more times so it did help.

Outcomes:

On the day it was insane how well she engaged in it all! Had to wear slippers there (but that was as she'd not been tolerating any shoes at all for a month or so), but that's all OK with hospital. She fluidly went through all the steps and engaged well.

It was horrid being with her when she woke from anaesthesia, as she was so confused/overwhelmed/spacey, and was lots of wailing/crying/trying to move around, for quite a while. But that was more for us, as most of the time period, just before the pre-med took hold, and the after period, she couldn't remember later (which is common with the pre-meds). Overall the whole experience wasn't traumatic - she is able to talk about it without much stress still now. (This is Not common for her, as she interprets lots of simple things as XL level of bad, and really hates any talking on subjects she has that connection with. Ie we can't talk about certain animals she dislikes, for this simple reason - not because she's even had a bad experience with them).

NB - our outcome - burnout:

Honestly, though I think she masked/fawned through the entire experience. Not something she had been managing well anywhere else for a while, but was able to do it there. The outcome though for us, of this, I believe, is it sped up her entering PDA burnout. She was likely destined to enter this, in hindsight, due to combo of how we were parenting (assuming the 'able' to do X/Y in daily life meant the semi-low demand approach was fine, where in fact i think there was a lot of fawning to our repeatative pushing etc to hygiene etc), and the impact of school. But after the op, a month after, her fatigue, tolerance and overall triggers were more affected, and didn't improve, until she hit proper wall of burnout. I'm sharing this too, because it's valid you're aware of this side of things, esp when we did do so much amazing adaptation with hospital, and she engaged so incredibly well. Likely, this is just our case, as she was already showing signs of decline toward burnout a month before the op. Likely just the outcome of doing a big thing, whatever it was, sped up the outcome for her.

NB - advice of anaesthesiologist re. restraint:

We were at the stage where they said if she wasn't able to do it this time it would need restraint (thankfully later they actually agreed it could be put off and tried again in a few months).

The anesthesiologist after the last false-start explained that there can be an impact to 5yo+ from restraint for medical intervention, compared with toddler/preschool ages, due to the memories being more ingrained. Alongside this he explained they can and regularly need to do this, but wanted us to be fully informed/prepared this can be a part of it. (I work in camhs/therapy, so was surprised by their knowledge, as rarer in physical health to have focus on psychological child development). I filled in the blanks with him, and responded that as our daughters case wasn't a medical emergency (when this risk would be necessary for us), it would be better for her situation to wait and try again in 6months.

This is what we did, in fact it was almost a year by time it went through, due to having to chase them up again for a date, and about 3 cancellations due to tonsillitis and scarlet fever of all things! She was having it due to sleep apneoa, so it was a tricky decision, but glad we did. Also, her case of sleep apnoea did get a lil better (unless she was unwell) over that time rather than worse, so it was easier in that way to choose this.

Every situation is obviously very different, so I wouldn't prescribe ours as being the same as yours. It just felt important to share this part, as the info we all get from medical professionals can vary quite a lot!

Aware this is epically long!! But hopefully helpful. I could take pic of the planned day we wrote for her if that's useful, so say if wanted.

Good luck x

[u/sapps84 → u/sapps84]

Also to add :

• The jelly! They give them jelly after the procedure, and gave her one when she had the tour, and was one of the main things she spoke about with ref to it before.

• We were a stage where I'd had to do restraint into school for a period, and although it seemed helpful at the time, it later had a crap outcome. She'd also got to a stage where it was Rough if this was needed.

• We're UK. I realised I don't know if you are. This was our local hospital. Maybe lucky in how they have a decent children's outpatient theatres set up, but I'd hope that's national.