As the parent of a child with special needs, I’ve learned a great deal about how hospitals work, what gets a care team concerned and the things to monitor closely during a hospital admission.
But each hospital admission comes with unique circumstances and situations that provide learning opportunities for both parents and caregivers. I’ve learned a lot from this hospital stay when it comes to the admission process, patient placement and safety when it comes to IV lines.
J.P. came into the hospital by ambulance on the Monday before Thanksgiving. He was vomiting and unable to maintain his oxygen level. We knew he would be admitted, but he was placed on the pediatric unit instead of pediatric intensive care. The pediatric ICU staff is well aware of his condition and has cared for him on many occasions.
Parents who find themselves in a similar situation should reach out to the doctor who made the decision to admit the patient. Let them know of the concerns and speak up about the reasons for them. Be prepared to discuss the patient’s medical background and any facts that would warrant the reasons for the change.
In J.P.’s situation, his oxygen saturation level can drop suddenly, which has led to intubation twice now within the past year — once as J.P. was being taken to the pediatric unit.
I also learned a big lesson in IV safety during this admission. J.P. had an IV in his foot that infiltrated and led to serious swelling. The problem came because he also had an allergy bracelet on his ankle. The swelling turned the bracelet into a tourniquet of sorts. The problem was found within enough time to prevent any serious consequences but taught me a few tips that need to be shared.
The most important thing is to watch IV lines closely and take note if the patient seems to be in pain. Avoid putting any ID or allergy bands on an appendage with an IV. A nurse can easily move them. In our case, J.P. had an allergy band on his foot and his hand. There’s really no need for two of them. Finally, ask questions about the medications being given through the IV. Some can be more damaging to veins than others.
We were dealing with some new doctors during this admission who weren’t aware of all of J.P.’s nuances. Be sure to provide contact information for your child’s primary care physician or any other doctor at the hospital who can provide background to those providing care in the emergency department or hospital unit.
Also, always carry a sheet of key information about your child. Ours includes J.P.’s diagnoses, contact information for doctors, previous surgeries, settings for his shunt and vagal nerve stimulator and medications. The medications include doses and strengths. If you use liquids be sure to include the amount of milligrams per milliliter.
All of this information can make things go much smoother in an emergency situation where you may not be thinking clearly.
We’ve been very lucky to have a care team that’s committed to J.P.’s well-being. Reach out to hospital leadership — a charge nurse or case manager — if you feel you’re not getting the care your child needs. Hospitals also have rapid response teams as a last resort.
We spoke up to several members of hospital leadership and were able to schedule a family meeting with most of J.P.’s doctors and nurses. The meeting allowed us to come up with a care plan for future hospital stays. It really makes a difference when everyone gets together for a meaningful discussion.
When you have a child with special needs, your hospital care team becomes family, and that’s exactly what’s needed in troubling times.
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