Parental Guidelines in Child's Medical Care

[Rbeck911, BSN, RN]

Hello everyone. I have a quick question regarding, legally, what parents can and cannot do in the involvement of their child's medical care. I am not even sure there is a precedent for what I am about to ask, but maybe there is someone familiar.

Children with a rare genetic disorder known as congenital adrenal hyperplasia are at risk of adrenal crisis. They require emergency protocol of addisonian crisis, which is administration of IV/IM hydrocortisone, IV NS maintenance or D5, Bolus NS x2 after glucocorticoid administration, and EKG monitoring. The window on this particular emergency is 30 min, so the parents of CAH children are given a solu-cortef injection to use in emergencies, then report to the closes ER. A situation arose when a parent of a CAH infant was taking a trans-Atlantic flight, lasting 8 hours, with her son. She asked what to do in flight if her son presented with adrenal crisis. I understand that if the child has been getting maintenance hydrocortisone doses as ordered and has no signs or symptoms of illness before the flight, the likelihood of a crisis mid flight is minimal. After doing some research as to what medical care is available in flight, I learned that the medical kits on planes often include supplies to start IV NS. However, no one is trained on how to start IV's (stupid). The supplies are there in case there is a medically trained passenger. This gave rise to the big question:

For Parents of children with such diseases that require fluid resuscitation, can they be trained in IV start/maintenance. This doesn't just pertain to the above situation. The problem presents that if a family is greater than 30 min from an ER, the mortality rate is greater due to increased transport time. Waiting 20 + min for an ambulance to arrive is not an option in rural communities.

What do you guys think?

[cayenne06, MSN, CNM]

Sure, they could definitely be trained in how to do this. However, it's not an easy skill to keep up when you don't ever have the opportunity to practice it.

[JustBeachyNurse, LPN]

If a child is high risk for needing fluid resuscitation and extended transport time to definitive care due to a congenital or genetic condition, some teams prefer PICC or Broviac insertion and train parents in daily care, maintenance, and dressing changes with weekly visits from an infusion nurse. This way the only need is to prime the line and start the fluids en route to the ED. Of course there are risks to initiating central or peripheral lines for any patient.

Peripheral IV training can be done for parents, however like the. PP said its a difficult skill to maintain if rarely used.

The only training flight staff have is usually basic CPR and AED use and ask pilot for an emergency landing (most times costs charged to the patient that required the emergency landing) CPR is often via facemask or BVM without supplemental oxygen.

Oxygen is NOT routinely carried on airplanes save for the emergency drop down masks. Not all flights carry IV supplies and fluids due to costs and loss due to expired supplies rarely used.

There are even restrictions on certain motorized wheelchairs due to hazardous materials contained within certain batteries. There are often additional charges and rental fees to travel by air with certain medical equipment that may be needed during a flight (feeding pump not operating via battery, non-travel nebulizer, IV or syringe pump not maintained by battery the entire flight, oxygen compressor). Some flights are not even permitted to transport certain equipment (such as wheel chairs with spare batteries or oxygen tanks of a certain size) due to international transportation of dangerous goods regulations.

[JustBeachyNurse, LPN]

I recently had a pediatric patient that was weaning off. TPN but was at risk for needing fluid resuscitation due to his medical condition. The medical & nursing teams decided because the family frequently (1-2x per year) flies from the east coast to the Middle East to visit with family, leaving the Broviac in place in case of fluid resuscitation need was the best option. They were given letters of medical necessity for TSA and customs regarding carrying tubing, heparin, saline flushes and 1L bags of D51/2NS). Mother was trained and reasonably competent in maintaining the Broviac, setting up and running TPN, and later trained in fluid resuscitation for her child.

[toomuchbaloney]

Parents can be taught to perform all sort of techinical tasks for their medically fragile children in the community.

[anon456, BSN, RN]

I have taken care of several children who had Broviacs and Port-a-cath's whose parents were fully trained in the use and care of those lines and the daily administration of IV meds and TPN. I have not heard of a parent who was trained to do IV insertions.