Medical WWYD

[k3am]

DD has her follow-up MRI today. After many, many, many bad MRI's, we finally demanded that they give her gas or versed before placing the IV for sedation. She is terrified of needles, and I don't blame her. For context, last week we had her 7 year appointment. I googled, and told her no shots, and all was well. Until the doctor pointed out we hadn't given her a flu shot (on purpose, but I couldn't say that) and.. she had to get a flu shot. It was a shit show. She kicked the nurse. It took two of us holding her down and almost 15 minutes for it to get done. My mom was able to hear her screaming.. from outside the building.
DD was horrified and kept asking me why I lied to her. 

This year, they want her to do a non-sedated MRI with movie googles. She is 100% on board with the idea. We've been listing to MRI noises, watching MRI videos etc, to help prepare her, and she's been confident she can do it. Last night she somehow ended up watching a technical video aimed more at technicians than patients, and they showed an MRI with contrast (AKA a shot). I had totally blocked it out. All of her MRI's have been sedated and we're not in the room, so contrast hasn't been a big worry for us. 

There's definitely contrast. I'm hoping to find out if they can at least give her something for the anxiety, and she's said she'd rather be sedated than have to get a shot. I'm not sure how I feel making demands of medical staff, and it's just one shot. (I totally rolled my eyes at a mom who flies down to her old pediatrician because the one she has here didn't use a numbing spray during a vaccination.)

Would you just reschedule and try to get a sedated one? Hope an antiaxiety drug is available and enough to help? Just make her suck it up? 

[mommyatty]

Make demands of the medical staff. Call early and tell them you’re dealing with a major needle issue. They should want her to be calm, and she’s a little kid who has had a lot of medical trauma. They can cut her some slack or reschedule if they don’t have a solid plan to deal with the needle issue.

[k3am]

And we have no answers since no one is answering. I guess I just... take her and hope for the best? Ugh.

[waverly]

Hmmm, not sure. My kids do OK with shots, so I think I am team suck it up. If I were 2 people holding someone down screaming, then my answer would probably be different.

What is it that you want, as a parent? Do you want the numbing stuff? Gas? If so, I would ask for that. If I remember this is not a kids hospital, so they tend to be less accommodating. Be prepared, and decide how you want to handle it ahead of time.

If I could avoid more intense sedation than just a light gas, then I would because I don't tend to be a fan of sedation. DD had gas for dental, but she was not under by any means. If you want to walk out/ re-schedule that is totally within your right. I think I would just want it done, and would work with my child on the anxiety part. We've done a lot of anxiety work around nightmares here. Do a quick google and see if they have anything about needles? Maybe a special present would be in order?  Watching something exciting on your phone?  Bribery!

[186momx]

After her recent pedi appointment I would force the issue especially if any needle would be needed and give the recent doctor flu shot disaster as reason. No person wants to cause any kid that much trauma. I would have also told the doctor no on the flu shot and walked out with the reason that you told her no shots so you aren't prepped for shots.

My DD also hates shots/needles and is a mess when it is time. She is a mess if I need a shot or blood draw. Last shots she had I refused to hold her down and made the doctor staff deal with her without me in the room and it went 100 times better.

[sandandsea]

I’d ask for whatever will make her most comfortable. You can at least ask and if they say no then at least you tried. And keep encouraging her that she can do it, she’s survived much worse and did survive the flu shot. Maybe her logical side will feel better knowing she is physically able to handle it?

[k3am]

Well I’m annoyed that I wasn’t able to prep her better. Still no response from anyone about what we can do (if anything). The hospital pharmacy doesn’t sell the EMLA/numbing pads that the brain tumor group recommends.

I told her it’s her choice when she finds out what her options are, but she needs to at least listen to them. Right now we’re here really early (the pads needed to be applied an hour in advance if they had them) and just bird watching and enjoying some cereal as a snack.

[k3am]

And that was a shit show. She’s 7 and she’s strong. It was embarrassing. We’re going to reschedule with sedation.

[186momx]

They should have listened to you when you said she needed sedation. I'm sorry it was a disaster and you have to go through the whole thing again.

[twinmomma]

That is so frustrating! I'm sorry.
I'm so mad that they wouldn't just do what you know works from the start. Why make it more difficult on purpose?

[mommyatty]

I’m sorry. I had an epic number of pokes as a little kid. For me it completely desensitized me to needles. But almost everyone else I know who had a major illness as a child has a needle phobia. But while I don’t have a needle phobia, I absolutely have a new doctor/new condition phobia. I ignore health problems for fear they won’t be able to figure out what’s wrong with me or will find something terribly wrong with me.

I feel for your DD. It’s rough. She’s not purposely being an asshole. She’s honestly traumatized. Poor thing.

[sandandsea]

Ugh. I’m so sorry. . Poor girl.

[mae0111]

I’ve been trying to think of advice or words of comfort, but I’ve got nothing. It’s awful to see your kids go through stuff like this. I’m sorry you didn’t get to have the MRI today, but glad you are rescheduling and she will be comfortable/blissfully unaware of what’s happening.

[campermom]

I’m sorry k3am. I hope the reschedule doesn’t take long.

[xctsclrx]

k3am, It doesn't help you in the moment, but would it be worth looking into some sort of therapy to help her with her phobia of needles? Unfortunately, needles will be part of her life forever it might help if she can conquer her fear or at least manage it. I have no idea at what age they start doing therapy for this kind of stuff.

[k3am]

xctsclrx, I'm not sure.

She really, really, really wants to get her ears pierced. Kid - that's someone shoving a needle into your ears. It's going to hurt. I've told her she can do it when I'm convinced she'll actually sit for it and not make a scene. And that getting the IV for the MRI would be a perfect example. So we're going to see if they'll let us reschedule her MRI in the goggle machine at a time that she can go NPO and let her try again with the back up that if it doesn't work, we sedate her with gas. She's on board with the plan. I'm not 100% sure the hospital will be okay with it or that she'll be able to manage it.

Half the problem - with both the flu shot and yesterday's MRI - is that no one freaking tells you these things are going to happen. So the flu shot, she got 10 minutes warning. Yesterday she got a few hours warning. No time to talk it through or prepare her.

[k3am]

Apparently sedating her is "not a good use of the anathesiologist's time."

Thanks assholes. I'm just going to be crying at my desk like a ninny now.

[xctsclrx]

And it is responses like that which make me think maybe therapy or something will help. My kid doesn't like shots, Not to the extent of your DD, but we bribe him with whatever it is that he really wants.

However if they don't warn you about it then you can't prepare ugh.

[186momx]

Mar 4, 2020 12:03:12 GMT -5 k3am said:

Apparently sedating her is "not a good use of the anathesiologist's time."

This is making me see red.  I would be calling her neurologist and finding out what they would like you to do because it is obvious hooking up an IV isn't possible at this time without sedation.  It is not like you won't be getting a bill from the anesthesiologist for his time.  

My girlfriends daughter same age range has had major medical issues too.  They had to reroute her bladder last year at age 7.  They have to drug her to just get her in the door of any medical provider including the dentist.  She is in therapy and for the first many sessions the therapist had to meet her not at the office because she wouldn't even walk through the medical building door without full blown hysteria.  Since all this she has been diagnosed with a ton of things and is on spectrum and finally getting help in a very round about way.  My heart breaks for her because I don't know if she will ever overcome this fear. 

[mommyatty]

k3am- No. Just no. Absolutely not. They can’t do the test if she’s not still. She’s not going to be still with a needle. So this is absolutely the very best use of the anesthesiologist’s time.

[sdlaura]

I agree with mommyatty . I'm sorry you have to do this the hard way, but there's got to be more senior people (hospital board?) that you could appeal to about what your daughter has been through so far and the relatively small amount of accommodation you need them to provide now. I'd draft a letter, copy whoever told you no, and start sending to higher-ups.

[k3am]

I emailed the pediatrician and asked him to prescribe her something. If he says no, we'll regroup from there.

We will try it their way one more time, hopefully with something for the anxiety, and hopefully it works. I'm hoping that the combination of it being a precursor to getting her ears peirced and having Child Life there will help. But I can't agree to having multiple people holding her down or using the sheets like a straight jacket.

And we work with a provider that is also the insurer, so they're basically just billing themselves for their own time. They are very cost efficient, and so far good at what they do, but it comes at a different price.

[waverly]

Right, if it were a children's hospital they might take it more seriously. Although the Child Life specialists that everyone touted were... disappointing... I don't think they showed up until day 2 or 3 of the hospital stay, and they only helped with IV insert once, out of the 2-3 times. We could have pushed harder, but they always seemed to not be there. The extent of their help was bringing a couple of toys and games.

There is that numbing stuff they do before the IV. It makes a little pop sound- Child Life would know. You can also buy your own numbing stuff (probably not approved by them though, so not sure if you can get it past the nurses).  Anything with lidocaine. 

[k3am]

waverly, Child Life showed up one time after DD's first surgery. Not at all for her second. Basically our only experience with CL at our hospital is that they run the playroom and outside space in pediatrics. And that they don't work on weekends, so on weekends, kids can't play or go outside. Which was really cool when the only place we could get her to eat or drink anything was sitting in the playhouse (in January.. but whatever. at least we're in CA).

I did just talk to the CL person who says she'll come down before the procedure. We shall see.

[waverly]

Yeah I guess same experience here, maybe the run the play area at the hospital (there is no outside area), but if you aren't well enough to go to the play area which was more like day 4 or 5, then oh well too bad. I just thought it was a strange contrast to everyone telling me oh Child Life will be your savior.

[k3am]

waverly, we had a stay at Stanford for 5 days and their Child Life was amazing, so I understand what they're talking about. DD couldn't leave the room because of all her equipment and cords, but they came by multiple times throughout the day to provide her with entertainment and play, swap out toys and games, etc. Any time they had to mess with her leeds, CL would come in and try to help distract her. And a lot of the stuff they brought to play with they deemed "single use" toys that they couldn't sanitize, so she got to go home with it.

(...and the food. That place had made to order restraunt quality food and they fed the whole family. Our hospital has TV dinners. But at least all of our hospital stays at our hospital have been single occupancy, which Stanford was not.)

[mustardseed2007]

Yes! Contact the patient advocate or social worker or whatever they call it at that hospital.

That's a shame that they don't use child life for giving kids shots or IVs. At our local children's hospital the child life people are amazing at working with the kids to make needles go easier on kids. It's so common for kids who have chronic medical issues to have a fear of needles that I'm frankly shocked at their response, even if it's not a children's hospital.

ETA: oh I see now that CL is going to come down to work with you guys before the procedure. Hopefully between your pediatrician (if that comes through) and CL ya'll can get it done : ( I'm sorry you guys are having to go through this.

[k3am]

The pediatrician is going to put in a prescription for her. CL is on board with that idea and they've all agreed that if she still can't handle it, we can do the sedation route.

I'm glad that in order to best use the anathesiologist's time, we're taking at least 2 3/4-days off work, and dragging all these other people into the process. YAY!

[waverly]

k3am, eyeroll. We all know the "best use of the anesthesiologist's time" is just a line for them saying, but we really don't want to...