Medically fragile/chronically ill children

[AKidd]

It goes both ways for sure. If someone is hysterical they are not getting in my ambulance, be it a parent, caregiver or fellow EMS provider.

I know my company's policies are that riders are allowed up front at the discresion of the crew. Riders are not allowed in the back unless there is a medically justifiable reason, or the patient needs an interpreter. This is because our insurance does not cover riders in the back unless it was medically necessary for them to be there. If we have a rider in the back it has to be documented, and exactly why it was necessary for them to be there has to be documented.

Per our Operations supervisor a ventilator is not a qualifying reason because according to our management the patient can be ventilated via BVM. This is not my personal opinion, this is simply what our orders are from management.

Vent you made a comment earlier about allowing a BLS provider in the back with a patient who has a PICC line or another vascular access device if the parent is in the back. State law where I am states that no, they can not. The parent is not legally recognized as a medical provider, and according to the state the BLS provider won't know what to do if a vascular access device (of any kind) becomes dislodged.

Wow - now, first up - I am in Canada, so I'll be the first to admit things are different. Brigid's first transport was at 3 months old - for that one, and every subsequent one, I have been in the back. It has never been a point of debate... although my qualifications might help there. I don't announce it, but it's one of those things that you notice (while the situation may make me uneasy, I can find my way around the back of a truck).

As for the parent not legally recognized as the medical provider... hang on to your hats. Pediatric TPN is NOT a community mandated therapeutic modality - which means "here is your kids and their TPN, here is a VERY brief review on how to run it and care for the lines, we'll send a home nurse out once or twice to see how you are doing, but you're on your own". Voila - instant "parent as a medical provider".

The vent/BVM thing boggles me. A patient has a vent that has been specifically programmed for them at set pressures, volumes, rates etc and is their "best" respiratory status. You service actually wants you to disconnect their vent and bag them for the duration of the trip (an admittedly far less accurate science) instead of allowing the parent who knows the ins and outs of the equipment to ride with? How about the equipment? Are you allowed to transport the actual vent? Is there "we won't fix it" liability tagged on to it?

For Brigid's last transport, O/A she was connected to her home O2, TPN, jejunal feed, drainage bag from her gastrostomy and her home monitor. She was not "stable" but there was really not much that could be done in the field for her - we were concerned she would deteriorate further en route in our POV. HR 240, RR 50, Temp 43*C (110ish - the dysautonomia causes some very odd presentations), BP 63/26. Based on your protocols, how would a 4 year old child like her be transported? This question is open for all posters to respond, not just Aidey. I'm really curious to see how things differ from place to place.

 

[VentMedic]

Vent you made a comment earlier about allowing a BLS provider in the back with a patient who has a PICC line or another vascular access device if the parent is in the back. State law where I am states that no, they can not. The parent is not legally recognized as a medical provider, and according to the state the BLS provider won't know what to do if a vascular access device (of any kind) becomes dislodged.

Do you have Paramedics doing most of the routine LTC or NH and dialysis calls?

Many of these patients do have some type of vascular access device.

 

[AKidd]

It has nothing to do with my company or the county protocols, it is a state law issue. Their justification is absurd too. I don't know what the law says verbatim, but basically they say that the EMTs don't know what to do if it becomes dislodged.

Now, just for clarification... is it if they HAVE a VAD, or they have a VAD in current use? For 7 hours a day, Brigid's Broviac is ethanol locked and she is not attached to anything (it is just under her shirt). Would she need to be transported by ALS simply because it exists, or is it only an issue if the VAD is in current use (therefore more likely to be dislodged - but it still not an easy thing to do)?

 

[VentMedic]

The vent/BVM thing boggles me. A patient has a vent that has been specifically programmed for them at set pressures, volumes, rates etc and is their "best" respiratory status. You service actually wants you to disconnect their vent and bag them for the duration of the trip (an admittedly far less accurate science) instead of allowing the parent who knows the ins and outs of the equipment to ride with? How about the equipment? Are you allowed to transport the actual vent? Is there "we won't fix it" liability tagged on to it?

This is a very complicated area since even many of the Paramedics do not even have ATVs or any type of ventilator training or very little knowledge about acid base. Few understand how much using a BVM vs a ventilator can change things even in the short term. This isn't even well addressed in the CCT courses.

Many of the 911 EMS companies and ambulances here are very reluctant to transport any equipment and it is not a space or manpower issue since many vehicles usually respond to a scene including a supervisor's truck.

Thus, the hospitals and doctors do what they can to keep these kids out of the 911 system through extensive parent education and utilize the hospital teams where possible. The amount of education most parents get in a few months of being at the hospital can almost double the number of "hours of training" the U.S. Paramedics get for everything in their programs.

This is also why I have emphasized that some read their policies and if there are a few known technology dependent children in the area, their medical director may be able to provide additional training and see about developing a new policy for those exceptions. It is also sad when Power and Utilities companies have more information about who is in the community than those who provide EMS.

 

[AKidd]

Thus, the hospitals and doctors do what they can to keep these kids out of the 911 system through extensive parent education and utilize the hospital teams where possible. The amount of education most parents get in a few months of being at the hospital can almost double the number of "hours of training" the U.S. Paramedics get for everything in their programs.

This is also why I have emphasized that some read their policies and if there are a few known technology dependent children in the area, their medical director may be able to provide additional training and see about developing a new policy for those exceptions. It is also sad when Power and Utilities companies have more information about who is in the community than those who provide EMS.

It is interesting you mention this - i am always (not so pleasantly) amused when I see the looks of shock on the responders' faces. I have made a point if notifying area Emergency Services about Brigid, and I know she is not the only tech dependent child within a 3 mile radius. Brigid cannot be disconnected from her TPN once it is infusing, so they are transporting her IV pumps, like it or not, but I am sure there will come a time when I will need to pick my battles.

 

[Aidey]

I forgot to mention something about the parent in the back issue. Some of our ambulances only have 3 seat belted seats in the back of the ambulance (versus others we have which have 5 seats). We are not supposed to have more people in the back than there are seat belts. If the patient is critical and there are extra people back there, there may not be a seat belt for the parent to use.

We can bring the vent and any other equipment*, but we aren't supposed to use it. The concern is that we aren't technically "checked off" on that equipment, and if something went wrong we (the EMT/Paramedic/Company) could be held liable since we didn't know what we were doing with the ventilator.

I know that in reality the parent is a medical provider, they just aren't legally recognized as one in the back of the ambulance. To be legally called an "ambulance" certain things have to be present**, and the parent, while knowing more about the patient than anyone else, doesn't count as far as the state is concerned. That is why the BLS EMT can't take things like the PICC line if the parent is in the back.

The overall theme with the regulations is that the provider has to be able to care for the patient as if the parent/caregiver wasn't there, even if they are.

I should also mention that we can take equipment our service does not provide as long as we are shown how to use it by a doctor, and the doctor states they are comfortable with us taking the equipment. It falls under "on line medical direction" in our protocols. What is silly is that how often does the MD program the IV pump? It is usually the RN or the pharmacy, but since we can only take orders from MDs, it has to be a MD that shows us how to use it.

This means that going to the hospital I couldn't use Brigid's vent, but if the MD at the hospital showed me how to use it, I could use it when she is going home.

I think a part of the difference between what I can and can't do, and what they there is that 1. I work for a private agency, who is restricted by state law, company policy, local protocol, and the terms of our contract with the county. Other places may not have to answer to so many people. Also 2. Canada has much more reasonable medical liability laws, so medical providers aren't all scared they are going to be sued for every little thing.


* We can bring equipment as long as it can be secured during transport.

**Random tid-bit, one of the requirements is a minimum of 10 Red biohazard bags. If you don't have 10 red bio bags, the ambulance is in violation of the legal requirements.

 

[AKidd]

**Random tid-bit, one of the requirements is a minimum of 10 Red biohazard bags. If you don't have 10 red bio bags, the ambulance is in violation of the legal requirements.

Does it say they have to be empty? :unsure:

 

[Aidey]

Now, just for clarification... is it if they HAVE a VAD, or they have a VAD in current use? For 7 hours a day, Brigid's Broviac is ethanol locked and she is not attached to anything (it is just under her shirt). Would she need to be transported by ALS simply because it exists, or is it only an issue if the VAD is in current use (therefore more likely to be dislodged - but it still not an easy thing to do)?

Have, as far as I understand. Dialysis patients with catheters are technically supposed to go with a Paramedic and not the EMT.

What is even crazier is that EMTs can take patients with catheters, J-tubes, PEG tubes etc. It is strictly the VADs that is the issue.



Back on the vent thing. Personally, if I were in your situation and live where I do I would approach the company and their MD sponsor and see if I could work something out with them. Like having the doctor add a protocol specifically for the type of ventilator or pump in use allowing them to be used during transport. If that didn't work, I would try and arrange something with the local CCT team who has RTs and RNs.

 

[Aidey]

Does it say they have to be empty? :unsure:

lol, no. All the list says is "10 Red Biohazard bags". It actually says red too. I wonder what would happen if they were the white ones with the red logo....

 

[Aidey]

Brigid cannot be disconnected from her TPN once it is infusing, so they are transporting her IV pumps, like it or not, but I am sure there will come a time when I will need to pick my battles.

Is there a pause function?

 

[AKidd]

Is there a pause function?

It is not an issue of "pause", TPN has such a high dextrose content (in Brigid's case, 16%) that it must be titrated and weaned to prevent severe hyper/hypoglycemic responses. In addition, the lipid component of TPN in hepatotoxic, and sudden starts/stops to it just intensify this effect.

So, I can "pause" it, if you want to wait the hour it takes to safely wean... not a good place to be.

If you want to find out more about Home Parenteral Nutrition, The Oley Foundation is a great source of information.

 

[AKidd]

Have, as far as I understand. Dialysis patients with catheters are technically supposed to go with a Paramedic and not the EMT.

What is even crazier is that EMTs can take patients with catheters, J-tubes, PEG tubes etc. It is strictly the VADs that is the issue.

I can sort of see that - if any of the other medically implanted devices are dislodged or damaged, they will make a hell of a mess (trust me, I KNOW!!) - if the VAD is damaged or traumatically removed (especially a port or CVC - the PICC is far less dangerous) your patient will bleed out.

 

[Sasha]

I can sort of see that - if any of the other medically implanted devices are dislodged or damaged, they will make a hell of a mess (trust me, I KNOW!!) - if the VAD is damaged or traumatically removed (especially a port or CVC - the PICC is far less dangerous) your patient will bleed out.

Bleeding control is essentially the same for basics and medics the only difference being the medics can dilute the bloods with saline and ringers.

 

[AKidd]

Bleeding control is essentially the same for basics and medics the only difference being the medics can dilute the bloods with saline and ringers.

It's funny you should say that, Sasha. I actually edited something to that effect out of my previous post (but in a "mildly" more sarcastic tone). I was curious if the powers that be would not let them transport bleeders, either.

As an only barely related aside, since you mentioned Ringers - those with mitochondrial diseases of nearly any type should not have Ringers - lactic acidosis is a hallmark of the disorder, and to add additional lactate to the circulation at a time of metabolic stress complicates it even further.

Gee, if it ain't one thing, it's another.

 

[rescue99]

Now, just for clarification... is it if they HAVE a VAD, or they have a VAD in current use? For 7 hours a day, Brigid's Broviac is ethanol locked and she is not attached to anything (it is just under her shirt). Would she need to be transported by ALS simply because it exists, or is it only an issue if the VAD is in current use (therefore more likely to be dislodged - but it still not an easy thing to do)?

No, BLS can transport a patient with a line not in use.

 

[rescue99]

Is there a pause function?

TPN is tapered off.

 

[rescue99]

It is not an issue of "pause", TPN has such a high dextrose content (in Brigid's case, 16%) that it must be titrated and weaned to prevent severe hyper/hypoglycemic responses. In addition, the lipid component of TPN in hepatotoxic, and sudden starts/stops to it just intensify this effect.

So, I can "pause" it, if you want to wait the hour it takes to safely wean... not a good place to be.

If you want to find out more about Home Parenteral Nutrition, The Oley Foundation is a great source of information.

OOPs, mom alteady answered taper!

 

[Aidey]

It is not an issue of "pause", TPN has such a high dextrose content (in Brigid's case, 16%) that it must be titrated and weaned to prevent severe hyper/hypoglycemic responses. In addition, the lipid component of TPN in hepatotoxic, and sudden starts/stops to it just intensify this effect.

So, I can "pause" it, if you want to wait the hour it takes to safely wean... not a good place to be.

If you want to find out more about Home Parenteral Nutrition, The Oley Foundation is a great source of information.

Thanks. I've run into some pretty medically managed children/teens (there is a living facility for them here) but all the ones I've transported have a gastric tube of some kind, rather than using TPN.

I can sort of see that - if any of the other medically implanted devices are dislodged or damaged, they will make a hell of a mess (trust me, I KNOW!!) - if the VAD is damaged or traumatically removed (especially a port or CVC - the PICC is far less dangerous) your patient will bleed out.

Bleeding control is essentially the same for basics and medics the only difference being the medics can dilute the bloods with saline and ringers.

It's funny you should say that, Sasha. I actually edited something to that effect out of my previous post (but in a "mildly" more sarcastic tone). I was curious if the powers that be would not let them transport bleeders, either.

It is absurd I know, and I don't blame you one bit for being sarcastic. It doesn't make much sense to any of us where I work either, since as Sasha said, bleeding control is about the same at any level of training. There is nothing a paramedic can do that an EMT can't when it comes to any of those devices becoming dislodged.

 

[redcrossemt]

One thing I would suggest to parents is providing information to their local EMS provider long before 911 is activated. Stop by your local EMS or FD station and let them know what to expect. Talk to some of the providers. Drop off an information packet. Encourage them to check with their medical director or supervisor about special protocols or on-line medical direction that may be needed to properly treat your child; as well as additional training in pediatric medical emergencies, and related chronic illnesses.

This also applies to older patients that are technologically dependent or with rare chronic illnesses. I had some learning to do the first time I ran on an LVAD patient.

A few months later, a different patient in our community came home with an LVAD. Before the patient was discharged, the hospital had already provided our station with information on LVADs in general, a technical manual on this particular model, phone numbers to reach the LVAD on-call nurse, etc. I was very impressed, and thankful to get the information. It was also a good time to request continuing education be made available to our crews on LVADs and the home care patient.

 

[grich242]

A few ideas on educating your providers on this subject in general. Use the continuing ed forum, in Mi we can use an "expert" to provide education i.e. a lawyer M.d. etc. it requires a little paperwork with a resume and you would most likely qualify. to lecture on your daughters specific topic with an IC. Talking with the agency in general is a great idea, for instance in our system we get a letter from the child's hospital forwarded to our dispatch center as well as all stations identifying the patient and address and summary of the condition. when dispatched to the scene we are notified prior to arrival of the patient's special needs. As for care I usually put the parents in the back with me and involve them in care as much as possible. As I'm sure you've seen from all medical provider levels most are probably not up to speed on your daughters condition some may be more comfortable than others but most of her care is probably provided by specialists. Ems will most likely be unfamiliar with the complications let alone the disease. As for providing care you are right in these instances I will be more of a taxi than anything, for example we are not allowed by protocol to access central lines, ports, etc prehospital, we do not carry vents, most on my department have never used one and are uncomfortable with them. Most are uncomfortable with peds in general let alone sick ones, and this is true for some er staff as well at all levels due to lack of experience. Smart providers will listen to you as to possible problems and complications, and when I teach this subject to our department I encourage people to get you involved in care as much as possible, for instance if your daughter needs to be bagged You are going to be better at than me( in most cases)offer, her vent will be more comfortable for her than a transport vent I could provide you can tell when she is agitated easier than me in most instances, you can give her calming reassurance more than i can, you get my point. Dont be shy about offering your care it will most likely benefit your child, and should be welcomed.