Medically fragile/chronically ill children

[AKidd]

I am a medic, but have not worked in the field for years after a severe back injury. My focus has changed in recent years to life as a stay at home medical care provider, as I have a now 4 year old daughter with Mitochondrial Depletion Syndrome. In the last year, we have had far too many opportunities to get to know the EMS personnel in our city, as Brigid is a frequent flier at the hospital and has a tendency to compensate for illness too long, then deteriorate quickly. She was just discharged yesterday after another Staph sepsis.

Brigid is VERY medically managed, TPN dependent, has Broviac, g tube and j tube... you get the picture. Anyhow, I am trying to write an article for a local publication and would love to get your input on what parents of children like Brigid can do to make transport and treatment easier. I can contribute information from both sides of the experience myself, but I am only one person - the publication is widely read by parents of fragile/complex children, and who knows - maybe something you share with me will turn around to help you in the end.

I am also including a section in the article outlining what does not help, or makes things worse... so please, feel free to vent.

I discovered these forums while searching for information on dual lumen Broviac lines (tough to secure on a little body) and found the discussion interesting - and one I could have learned a lot from while still working in the field. Brigid has made her way through most types of CVLs in her life - Port, PICC, single lumen Broviac, and as of Wednesday afternoon, the dual, so if you have any questions, I'd be happy to answer them based on the care protocols we use here or from a caregiver/consumer perspective.

 

[rescue99]

I am a medic, but have not worked in the field for years after a severe back injury. My focus has changed in recent years to life as a stay at home medical care provider, as I have a now 4 year old daughter with Mitochondrial Depletion Syndrome. In the last year, we have had far too many opportunities to get to know the EMS personnel in our city, as Brigid is a frequent flier at the hospital and has a tendency to compensate for illness too long, then deteriorate quickly. She was just discharged yesterday after another Staph sepsis.

Brigid is VERY medically managed, TPN dependent, has Broviac, g tube and j tube... you get the picture. Anyhow, I am trying to write an article for a local publication and would love to get your input on what parents of children like Brigid can do to make transport and treatment easier. I can contribute information from both sides of the experience myself, but I am only one person - the publication is widely read by parents of fragile/complex children, and who knows - maybe something you share with me will turn around to help you in the end.

I am also including a section in the article outlining what does not help, or makes things worse... so please, feel free to vent.

I discovered these forums while searching for information on dual lumen Broviac lines (tough to secure on a little body) and found the discussion interesting - and one I could have learned a lot from while still working in the field. Brigid has made her way through most types of CVLs in her life - Port, PICC, single lumen Broviac, and as of Wednesday afternoon, the dual, so if you have any questions, I'd be happy to answer them based on the care protocols we use here or from a caregiver/consumer perspective.

First, let me say how great you must be caring for Brigid as kids with her syndrome seldom see 1, let alone 4!! You are blessed.

I can problably add something so feel free to message me later.

 

[AKidd]

Thank you, rescue99 - but I cannot take full credit.

Brigid has an amazing medical team and has been "medically managed" since she had her first stroke as a neonate. This has allowed us to respond to issues when they were less severe, although we have seen some significant deterioration in the last year. Because she has autonomic involvement, her last transport was likely as traumatic for the crew as it was for us - she had a temp of 43*C and a HR of about 240. Once we got the antibiotics going in the ED, she began to improve within 24 hours, but it was a wild ride in the interim.

It was actually the presence of mind of the crew that led me to start this article - they were clearly uncomfortable with Brigid's presentation (do you blame them?) but took the time to ask what Brigid's "norms" were, ask how and where we wanted her transported, and help me ensure we had collected the stuff we really needed (spare TPN bag, comfort item for Brigid) before we rolled. If they could do those things, there certainly had to be something that parents of the complex kids can do from our side to make it easier to transport as well.

 

[rescue99]

Thank you, rescue99 - but I cannot take full credit.

Brigid has an amazing medical team and has been "medically managed" since she had her first stroke as a neonate. This has allowed us to respond to issues when they were less severe, although we have seen some significant deterioration in the last year. Because she has autonomic involvement, her last transport was likely as traumatic for the crew as it was for us - she had a temp of 43*C and a HR of about 240. Once we got the antibiotics going in the ED, she began to improve within 24 hours, but it was a wild ride in the interim.

It was actually the presence of mind of the crew that led me to start this article - they were clearly uncomfortable with Brigid's presentation (do you blame them?) but took the time to ask what Brigid's "norms" were, ask how and where we wanted her transported, and help me ensure we had collected the stuff we really needed (spare TPN bag, comfort item for Brigid) before we rolled. If they could do those things, there certainly had to be something that parents of the complex kids can do from our side to make it easier to transport as well.

Kidd,
Been where you're at and believe it or not, strokes were a primary cause of disability in utero too. Please message me later. Gotta go..

 

[VentMedic]

Hospital clinicians spend a lot of time teaching the parents everything they need to know about their child and then some. We also teach them about what to expect and what not to expect from EMS providers. Unfortunately some did get to see first hand that medically complex children are not something many in EMS want to deal with when we had a relatively large FD that promised to send 50 FF/Paramedics for a class but only 5 showed up. A few parents had brought their children in for the Paramedics to meet and for the children to meet those who might be their rescuers. There is also a large pedi sub acute that offers to do training but their classes have been very few due to a lack of interest. There have also been other threads on EMS forums started about medically complex children but is not a well discussed topic. Pediatrics is still a very weak area in EMS education in the United States.

However, some areas in the U.S. have specialty crews from the hospitals that do have arrangements to transport some medically complex children to and from the hospital. But, when EMS is necessary, it is generally the parents who must make the first moves to put everyone at ease.

 

[AKidd]

I am 100% on board with you on that, Vent - as a parent, what can I do to make you more confident? I have spoken to other parents who are carrying on about "I told them to X and they claimed they could not" and then took some time to explain protocols and limits of service - certification levels, etc.

I am less than proud to say that with a complex child, the EMS is often used as a medical "taxi" service - they are too unstable for us to transport ourselves, but we are basically doing much of the same that you can do already. Fortunately, kids like Brigid are still uncommon to encounter in the field, but have you ever had something go south because of the response/demands/expectations of a parent? What I am hoping to do here is write something that will tell parents like me "it is easier for everyone if you do this, but that is terribly unhelpful" if that makes sense to you.

I realize this is vague, and the "lack of interest" is disheartening, but to be confronting such an intangible subject it is bound to be. We all know calling the EMS responders hose monkeys or bus drivers does not set up for a good rapport, but what does? Generally, these kids don't fall into the MAGGOT category... so if we can work together, it night be smoother for everyone.

 

[firetender]

I really appreciate that you're bringing this here, and hope you'll instruct us even more as you learn.

Once I established that my charge is relatively stable for transport, my very human curiosity would go to, "How can that woman/man deal with having a child so afflicted?" And, frankly, it could very well be a springboard for my nightmares.

I say to myself, "I couldn't do it." but I know I would, as you are doing. I'd like to hear a few of your thoughts for us about what would be useful to understand when dealing with the parents. Sure, there's the medical aspect, but the thing that's most likely to throw the medic off-guard is the space in-between, where the medic must meet YOU face-to-face.

That DOES mean you're often put in the position of having to reassure the medical personnel, I bet. What should we know so it's not so much work for you to smooth out OUR emotional states?

The goal is to dispense with the variables and quickly come to common ground in support of the child.

Blessings to you, Brigid and the family.

 

[rescue99]

I really appreciate that you're bringing this here, and hope you'll instruct us even more as you learn.

Once I established that my charge is relatively stable for transport, my very human curiosity would go to, "How can that woman/man deal with having a child so afflicted?" And, frankly, it could very well be a springboard for my nightmares.

I say to myself, "I couldn't do it." but I know I would, as you are doing. I'd like to hear a few of your thoughts for us about what would be useful to understand when dealing with the parents. Sure, there's the medical aspect, but the thing that's most likely to throw the medic off-guard is the space in-between, where the medic must meet YOU face-to-face.

That DOES mean you're often put in the position of having to reassure the medical personnel, I bet. What should we know so it's not so much work for you to smooth out OUR emotional states?

The goal is to dispense with the variables and quickly come to common ground in support of the child.

Blessings to you, Brigid and the family.

Start by using the child's name. It's a hit with most parents right off the bat.
Talk with the child and the parents/caregivers. While it seems that talking beyond a multiply impaired child is right, words are soothing to a child too. In addition, it lets a parent know we do think with emotions as well as with our technical minds. Open the door...the rest easily comes in.

 

[reaper]

Yes, Thank you for taking the time on this. I have run many peds cases, where I had no clue about their illness. I would turn to the family for information and learn all I could from them. They are the ones that deal with it everyday and are a wealth of info on the illness.

Vent, I wish more peds hospitals would put on training seminars for EMS and RN's. I think it would help greatly.

I do see what you have seen. Our hospital puts on many great seminars for trauma, stroke, and cardiac. Sadly, it is always the same 5-10 people that show up for them. I am greatful that the hospital takes the time to do these and wish more would take advantage of them!

 

[Seaglass]

I am also including a section in the article outlining what does not help, or makes things worse... so please, feel free to vent.

I guess my suggestion would just be for the parents to keep things written down in a concise fashion, especially if they're likely to panic when we arrive, or leave the kid with someone who isn't as familiar with the condition. Forgetting stuff is completely understandable at three in the morning, when bad things are happening very quickly, so it's best to be organized in advance. Medication lists, especially ones that include dosages and purposes (we won't know off-label uses for everything, and might not have ever seen some of the more uncommon drugs) are great. So are quick factsheets on the illness. Giant printed-out articles are not such a good idea... it's fine to drop them off at the station, but not so great to expect that we can and will read them on scene, or that the parent will be able to leaf through and catch everything we should know.

Telling us about normal presentation--that can be part of the factsheet, too--is crucial. Especially in larger areas, you might happen to get some crew you've never seen before, even if the kid is a frequent flier.

ETA: I would love some more training on peds with chronic illness, or peds in general. Most of what I've been learning is what I've learned in the field or found online...

 

[VentMedic]

For EMS:

You need to become familiar with your company's policies and know if there are exceptions.

Too often the parents will hear "We can't" "You can't" at the scene when it comes to transporting certain equipment and having a parent accompany the child in the back.

Find out if an EMT-B can do a routine transport for a child with a vascular access device with the parent accompanying the patient.

Find out if a trach is allowed on a BLS truck with the parent accompanying.

This can save a lot of confusion at the hospital or home when someone calls for a BLS truck to transport the patient to and from home or the doctor's office.

Paramedics should take some classes to become familiar with various vascular access devices and they should still allow the parents to show them the correct way to access a device if needed. There is no reason to put a child through an IV stick or even an IO, which unfortunately was done on a conscious child not too long ago, when the child has a central line.

Find out if you as a Paramedic can transport a home care ventilator attached to the child with the parent accompanying. I do know in California there has been an issue since some Paramedics who do "CCT" are only allowed to have ATVs on board and some home care kids are on LTVs. Thus, an RN CCT must be utilized for what might otherwise be a nonemergent routine transfer to the doctor's office.

Don't push the parents out of the way with a take charge attitude because you have been taught you are in control over every scene and believe anybody who is just a layperson, including the parents, don't know as much as you. We had a thread about that on this forum and I believe the person arguing against listening to the parents has gotten much more education and now sees how important it is to work with the parents. If possible, you can even let the child be your teacher.

Take classes that are offered at hospitals even if you don't get an engraved invitation. They may not sound like exciting classes because they do deal with chronic illnesses and devices by you might be surprised at how much they will increase your awareness of what and who is out there in your community as well as how far medicine has advanced in homecare. And, get over the stigma of chronic care being routine or just another BS call when you hear it go out on the air waves.

While this is a difficult topic it still needs to be addressed; take a class on death and dying especially where it concerns a child. Some kids will be DNRs and it is a difficult situation for an EMS provider to accept. Some kids will also talk openly about death especially those who have been sick for a long time or know they have a progressive terminal illness. Don't agrue with them because they know the facts better than you and can probably enlighten you about life and living through their understanding of dying.

 

[firetender]

Fact sheet elements

So are quick factsheets on the illness.

I think that is a wonderful idea and I'd like to start the ball rolling on essential elements that might be included in a standardized fact sheet for special cases such as this.

HEADER: "This Information Sheet has been prepared for you to save time. It is up-to-date and includes information about the current problem. Please refer to this as you prepare for transport. I am available for your questions."

NAME AGE SEX
CAREGIVER/GUARDIAN phone
DOCTOR phone
BACK UP Dr. phone
USUAL ADMITTING FACILITY
DIAGNOSIS
A. One Paragraph description
B. Primary systems affected
C. Life threatening complications
MEDICATIONS (include simple, essential warnings)

PRE-DETERMINED EMERGENCY MEASURES
SITUATION TREATMENT
(If the pt. has a protocol to treat expected/typical complications)

**********The above can be a permanent record
Below can be info written in at the time

LAST HOSPITALIZATION
WHAT FOR
HOW LONG
COMPLICATIONS?
CURRENT COMPLAINT
INSTRUCTIONS GIVEN BY DR>__________
MEDICATIONS GIVEN TODAY TIME
MOST RECENT VITAL SIGNS (if taken)
(Leave room for a few, with times)

Here's what I have for starters. Maybe we could all help refine it.

 

[AKidd]

I've been Brigid's mom for a while now but a paramedic for a whole lot longer. I have tried to run a fact sheet for her that became 2 pages, then 3 - now it is a page of meds - 27 of them (drug, use, dosage, frequency, prescriber) a separate page of her docs/specialists and other pros and a 3rd of a "basic" medical hx.

It actually might be wise for me to keep those for the ED and make a "transport" sheet for her. I think what you put together is a stellar springboard.

Many of the diseases that fragile children will present with are diseases are uncommon, and of them MDS is even moreso, but I wonder if disease specific information might be overkill. I am an information hound, but not everyone is like me - as an EMS professional - would you have any interest in an info sheet I could leave with you to look at when you have some down time, instead of burying more "generic" information in the midst of the info specific to the here and now of the child?

I look forward to having the opportunity to share the article with you when I am all finished, and hope to get your constructive criticism. I am active within several parents' groups that I can share it with, too. Perhaps we can make dealing with these awkward situations a bit easier all around.

Heck, maybe I'll just be selfish and hope that it helps us here at home.

 

[Aidey]

... I have tried to run a fact sheet for her that became 2 pages, then 3 - now it is a page of meds - 27 of them (drug, use, dosage, frequency, prescriber) a separate page of her docs/specialists and other pros and a 3rd of a "basic" medical hx.

It actually might be wise for me to keep those for the ED and make a "transport" sheet for her. I think what you put together is a stellar springboard.

Many of the diseases that fragile children will present with are diseases are uncommon, and of them MDS is even moreso, but I wonder if disease specific information might be overkill. I am an information hound, but not everyone is like me - as an EMS professional - would you have any interest in an info sheet I could leave with you to look at when you have some down time, instead of burying more "generic" information in the midst of the info specific to the here and now of the child?

I am working on a longer reply, but I wanted to reply to this before I forget.

I think disease specific information is really nice to have. It doesn't need to be a 10 page break down, but something that lists the cause of the condition, the major effects, and the possible complications would be helpful.

I personally don't find 3 pages of information overwhelming. I may not use some of the information you've listed (like who prescribes a certain med) but the hospital might, and I like knowing what a med is prescribed for, and if I don't know I almost always look it up.

 

[firetender]

as an EMS professional - would you have any interest in an info sheet I could leave with you to look at when you have some down time, instead of burying more "generic" information in the midst of the info specific to the here and now of the child?

Heck, maybe I'll just be selfish and hope that it helps us here at home.

For clarity's sake, I'm an ex-paramedic, out of the specific field since 1985. My lifetime since, however, has been part of the broader description Healing Arts, a large part of which has been communicating things I learned in the back of an ambulance. I am a writer. I've been part of this forum since 2005.

I'll be more than happy to review what you have and see if I can help shape it into a Dragnet Fact Sheet ("Just stick to the facts, Ma'am!") pertinent to medics.

Send me a PM and I'll give you my e-mail to send it to. Then, let's post the basic format here to see if it could be useful to others.

 

[Seaglass]

I've been Brigid's mom for a while now but a paramedic for a whole lot longer. I have tried to run a fact sheet for her that became 2 pages, then 3 - now it is a page of meds - 27 of them (drug, use, dosage, frequency, prescriber) a separate page of her docs/specialists and other pros and a 3rd of a "basic" medical hx.

It actually might be wise for me to keep those for the ED and make a "transport" sheet for her. I think what you put together is a stellar springboard.

Many of the diseases that fragile children will present with are diseases are uncommon, and of them MDS is even moreso, but I wonder if disease specific information might be overkill. I am an information hound, but not everyone is like me - as an EMS professional - would you have any interest in an info sheet I could leave with you to look at when you have some down time, instead of burying more "generic" information in the midst of the info specific to the here and now of the child?

For a transport sheet, I think length depends on complaint. If the patient usually just needs a ride to the hospital with monitoring, a longer sheet is fine. If they're likely to call us with something where we're going to be really busy, concision is going to be more valuable. Multiple versions of the sheet could be an option. Same for having the briefest possible overview as the first sheet, with more detailed information organized on pages behind that. Clear organization is really critical. Flipping through something trying to find relevant information wastes a lot of time.

I do want disease-specific information, even if it's just some bullet points. (Speaking of, would you mind posting a link if there's a good page about MDS? I'm finding all kinds of stuff about mitochondrial myopathies, but not much about that one in particular.)

I'd also be glad to look over an info sheet as well. I often wind up taking the history, especially with more anxious parents, even if I'm not yet equipped to actually do much with the patient myself.

Another tip I'd have for parents is that the calmer you are, the more likely we are to let you ride in the back. If you wear your seatbelt and are helping keep the kid calm, we're glad to have you. That only goes for my service, of course, but I suspect we can't be the only ones.

 

[VentMedic]

Another tip I'd have for parents is that the calmer you are, the more likely we are to let you ride in the back. If you wear your seatbelt and are helping keep the kid calm, we're glad to have you. That only goes for my service, of course, but I suspect we can't be the only ones.

You will find it is not the parents who are the problem. EMT(P)s don't like to be out of their own comfort zone and that is even seen at adult subacute facilities. When they are faced with things they have never been told about or where a disease process doesn't fit in one they know, they usually are the ones who will esculate a situation with the "You can't" "We can't" issues which is why some should review their policies now as chances are the families and hospitals (especially Children's Hospitals) may know your own company's policies better than you. As well, just about any pediatric call puts some EMT(P)s out of their comfort zone since it is not a topic that is covered to any great extent in either EMT or Paramedic.

It is good families can give something to read which might calm down the EMT(P)s a little.

 

[Aidey]

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.

 

[Sasha]

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.

I'm shocked. When I did BLS IFT we took patients with PICCs, central lines, trachs, heparin locks, and pts with normal saline or TPN if it was on a dial-a-flow or at KVO. That's simply amazing your basics can't take a patient with simply because they have a PICC. What a difference in protocols. If that was the case here 90% of our transports would have been ALS simply for a PICC

 

[Aidey]

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.