There is an emphasis under healthcare reform on preventing medical errors. This can be as simple as medication administration and as complex as surgical procedures. There is also an initiative on preventing hospital readmissions. Here are some possible concerns:
- Duplicate tests or unnecessary invasive procedures
- Secondary infections
- Medication errors or side effects
- Emotional impact on families
What Can Parents Do?
Labs: If your child just had bloodwork or other samples taken, ask if they can add new lab tests onto the samples they already have, usually this works if it’s within 24 hrs. This may save your child from having to get another needle or other samples. Also find out what tests are needed that day so samples aren’t discarded and then needed later that day. Also, if you know they’re monitoring output (urine/ feces/emesis) for example, don’t let someone discard anything until you check with the nurse if it’s ok. Sometimes aides or cleaning staff in trying to be helpful, will throw something out in error.
Procedures: Ask if there’s a less invasive option, this is especially true for surgery. For example, for “prep” if a child can drink the Golytely in a certain period of time, an N-G (nasogastric) tube may not be needed. For a urine sample, if a child can’t use a specimen container, ask if they can go in a toilet “hat” and transfer; for incontinent children, sometimes gauze can be put in a diaper rather than using a catheter. Maybe a nurse could use qtips instead of suction for viral samples. If your child needs multiple sedated procedures, see if they can be combined in the same day. Or if your child is being sedated for something else but needs a dressing change or new IV which is distressing to them, have it done while they’re out.
Hospital Acquired Infections:
Sometimes the secondary infection may be even worse than the original condition. UTIs (urinary tract infections) can be caused by poor hygiene, such as leaving a child in a soiled diaper. C.diff. (C-difficile) is one of the worst and can even be fatal. NOTE: Antibiotic gels don’t destroy it, only soap and water does. If your child gets one of these infections, ask for a “test for cure” to make sure it’s gone after the medication is done. Make sure staff, family, and visitors are following “contact precautions” such as using gowns, gloves, masks, and washing hands. Afterwards, if your child goes home with an infection, ask what you need to do differently. For example you may have to bleach the bathroom, wash clothes separately etc. so no one else gets it.
This can occur especially if your child is on many medications or they change frequently. Sometimes the hospital pharmacy will make a substitution and you need to make sure it’s the same dosage. The nurse should verify what was sent by pharmacy but families can also double check. Also note that some meds. are usually only given for a certain period of time and may “time out” in the system which means pharmacy doesn’t supply it. Doctors depend on the nurses to administer and may not be aware it’s stopped. And nurses may not be aware of why it was discontinued as they just administer what’s supplied by the pharmacy dept. so they don’t question when it was stopped. For example, antibiotics are typically only given for 10-14 days but are needed for a full year post-transplant. We use My Med. Schedule (see resources) to ensure our child is getting all her medications and compare it to the nurses list each time; we also ask to be informed of any medication changes. In addition, we made sure our child had clean hands before anything like meds., food, or drink went into her mouth.
Medication side effects:
Sometimes medications have unexpected consequences. For example, three of the meds. my daughter was on have pulmonary side effects so she ended up with 70% lung function and interstitial pneumonitis, which is symptomatically similar to pneumonia without viral/bacterial cause. After the doctors adjusted her meds., her coughing stopped. Also, meds. to treat one condition may cause another. Sometimes antibiotics can cause a C. diff. infection. Then the meds. used to treat C. diff. can cause a fungal infection. If you know your child has a pattern of bacterial or fungal infections, ask if there’s another med. or if a preemptive dose like a fungal med. can be given to prevent a full-blown infection. Always ask about side effects, which is especially important if your child already has conditions like hypercholesterolemia, hypertension, hyper/hypothyroidism, etc. For a list of medication side effects, consult the Physician’s Desk Reference (see resources).
How to Deal (medical errors and general hospital experience):
I added this section because medical errors can cause additional unnecessary stress on the child and families, in addition to just being in the hospital. In even more serious situations, you can watch your child being resuscitated and no one even asks you how you’re doing and THEN you have to go back into your child’s room and act like everything is ok for their sake. I found that Child Life was helpful to alleviate my daughter’s fears before a procedure or sometimes stayed to calm her during. They also helped when she was upset that she wasn’t able to eat for 4 months (we also put a sign on her door so the nutrition dept. wouldn’t come in and ask what she wanted on the menu). The Social Work dept. was helpful when I asked how to help my child when she felt like I wasn’t able to help her with personal care when she needed me the most in ICU as she was hooked up to multiple IVs, foley, PICC line then Broviac, IJ then medcomp, and ventilator. They reminded me I was there to be her mom, not her nurse, and just do what I could. Another thing that was extremely helpful for my daughter who has autism when her anxiety started affecting her medical status (e.g. skyrocketing heartrate), was the developmental pediatrician implementing a behavior plan which became part of her permanent chart. This included preparing her before, if possible doing the procedure in steps so she could calm down in between (using a heart monitor during), and involving Child Life.
I found it helpful to keep a notes folder in the room which helped to remember important issues under stress. We would also put important things on the memo board like she could only have water, or calming items (aides would turn off TV but it actually helped her sleep to leave on), when you’re not there. We brought many of her personal care items if she couldn’t use what was supplied by the hospital. We even had signs on everything from the thermostat (at risk of dehydration if too hot), personal supplies (toileting hygiene), food/toiletries (no fluoridated water/toothpaste or aluminum deodorant due to decreased kidney function), and even a child sleeping sign so folks would be quieter. Families need to remember to question and speak up. If there’s a concern about what an aide is doing, ask the nurse. If there’s a concern about the nurse, ask the charge nurse. Families can bring up important issues to doctors as part of morning “rounds” on their child. They can also let the hospital infection and/or quality control know of concerns. By working in partnership with hospital staff, families can help their child get the best consistent care.
Getting and Staying Home
Make sure you have a discharge plan and everything in place before returning home (e.g. home nursing or homebound instruction for school if needed). Try to get dates for follow-up appointments before going home. Make sure you have all the meds. Follow all of the doctor’s instructions at home, ask if there are any changes to the personal care routine, and if you should monitor anything (e.g. temperature, blood pressure, intake/output, weight, etc.) Get a list of reasons to call the doctor and what to do in an emergency. Hopefully by doing these things you can maintain your child at home.
Medication Organizer: www.mymedschedule.com
Medication side effects: www.pdr.net/
Please note this post was written by Lauren Agoratus, even though Blogger indicates Christina Shaver