Making Medications Easier

Medications!  Mercy!  My world sometimes seems to be ruled by medications.  It is the first thing I did in the morning and the last thing I did for Maddie before she went to bed.  When Maddie came to me, she did not have one medication.  The first week two were added.  By the time she was a year old she was on a handful and every year more were added.  That is not unusual for medically fragile children (or adults for that matter).

 I, however, was not good at the whole process.  I wasn’t even good at remembering to take an antibiotic when I needed.  I failed on birth control pills because I could not get the hang of taking them every day.  With Maddie, it was imperative that I get it right every time. 

It required me, who am extremely organizationally challenged, to develop some organizational skills.  Over the years I discovered how important it was and became very efficient about all of it.  Here are a few things that were helpful to me.

1.  Keep all medications in the same place.  Pick a place with adequate safe storage and near a water facet.  If there are a number of medications given at different times of the day, place them in order of time given.

2.  Try to encourage the medical team to add medications to times when meds are already scheduled.  Ideally all meds could be given at two or three times a day otherwise the whole day is spent doing medical things.

3.  Order refills in a timely fashion.  Most pharmacies and insurance companies allow medications to be refilled 7 days before running out.  Thursday is a very good day to check all medications and place orders.  That way if there is a problem it can be resolved Thursday afternoon or Friday.  It is much harder to resolve problems on Friday afternoon or over the weekend when doctors’ offices are closed. 

4.  Be consistent with the times meds are given.  It does not have to get in the way of other things in life.  I have been known to give medications in restaurants, in the back of the van, in the dugout of a baseball field, and at rest stops.  In my estimation this is one of most important things to our kids.  Set a timer or arrange for someone to call with a reminder until it becomes second nature.

5. If a child goes to day care or school, send only medication for one day at a time.  It may seem inconvenient but it allows you to make sure medications are given.  In situations with other children, it is easy for medications to be overlooked or forgotten.  One quick look will confirm that the medication has been given in the correct dosage.

6.  Never send medications in something other than a correctly labeled container.  A while back a child died because a mom gave a nurse a syringe label as heparin with a medication the mom had intended to be given through the g-button.  The nurse gave it through the child’s central line.  *** Please note: Medical professionals who are competent will never give a medication mixed up or drawn up by someone else.  It may seem inconvenient and rather parental but it is really to protect our children.

7.  A computer generated medications sheet saves a lot of time.  Every doctor visit, clinic appointment, and emergency room admission begins with a communication of current medications.  It is very annoying and frustrating!  Although I am pretty good at remember the names and the purpose of the medications, there is no way I will remember the concentrations.  If there are not too many it is not a problem to gather the med bottles on the way out the door.  However, if there are a number of them a med sheet is so much easier.   It needs to include the name of the drug, concentration of medication, amount given, route delivered, and time given.  It needs to be frequently up dated.  At the bottom of the page is one of Maddie’s old ones.  I always kept a copy on Maddie’s wheelchair and one in my purse.


Medication sheet example:

March 2011                                                                             Allergies:

Madeleine (Maddie) Halla Gillett                           Demerol: seizures             Codine: vomiting

DOB: 5-22-96                                                            Morphine:Apnea              Macrodantin: vomiting     
                                                                                   Albuterol: heart rate increase 
                                                                                   Plastic tape: rash and sores    

Morning Medications:                                                                                               

Medication	Strength	Amount	Delivery Mode
Prevacid	3mg/ml liquid	5 ml	G-tube.   Keep refrigerated.
Raglan or Metoclopramide	5mg/5 ml liquid	6cc	G-tube
Synthoid	100mcg/tab	1 tablet	J-tube
Cortef	5mg/ tab	2 tablets	J-tube
Neurontin	300 mg capsules	4 Capsules	J-tube
Trileptal	300mg/tab	1 1/2  tablets	J-tube
Keppra	500mg/tab	2 tablets	J-tube
Provigil	100mg/ tab	1 1/2 tablet	J-tube
Vitamin/iron		1 tablet	J-tube
Vitamin D	1000IU	1 tablet	J-tube
Flow Vent	100mcg	1 puff	mouth
Fluticasone	50mcg/puff	1 puff/each	nose
Glycopyrolate	2mg/tab	1 tablet	J-tube

Evening Medications:

Medication	Strength and form	Amount	Delivery Mode
Prevacid	3mg/ml liquid	5cc	G-tube.   Keep refrigerated.
Raglan or Metoclopramide	5mg/5 ml liquid	6cc	G-tube
Cortef	5mg/tablet	1 tab	J-tube
Glycopyrrolate	2mg	1 tablet	J-tube
Neurontin	300 mg capsules	4 Capsules	J-tube
Trileptal	300mg	2  tablets	J-tube
Keppra	500mg	2 tablets	J-tube

Formula: 24 hours recipe for 2000 ml

Mix:     420 ml (14 ounces) Peptamen AF
       360 ml Pedialyte
       1220 ml Water  (hot)
       1/4 teaspoon salt
       2 packets Benefiber
       2 Scoops Beneprotein
       ½-1 cap Mirlax 17/cap

Divide in 2 containers pour 700ml  formula mix to the day bag. Add 3 K-phos (Phospha) tablets crushed and
7.5 ml Potassium Chloride  (20% 40Meq/15 ml).

 Add 10 ml Calcium Carbonate to night bag, place in fridge

.

   

Staying Cool and Staying Warm All Summer

I made my first trip to California this week visiting friends in Irvine.  One of my preconceived visions was that the weather would be nice but warmer than what I am used to in Nebraska.  Wrong!  Eastern Nebraska is topping out in the mid-90’s this week and this part of California is in the 80’s with nice cool temperatures over night.  It is not at all what I expected. 

Weather is always unpredictable!  It can be annoying and with a medically fragile child it can be a major concern.  Some children are not able to regulate their body temperature to keep themselves at a comfortable and safe temperature.  This requires caretakers to be vigilance and creative—especially in the summer time.   

Children are impacted by both the heat outside and the downright cold temperatures created inside by overactive air-conditioning.   Trying to dress a child to handle both in the same outing can be tricky.  The age old advice about dressing in layers is definitely true for our kids in the summer time.   Start with a light weight outfit and be prepared to add accessories for additional cooling or warmth.

There are a number of things that can be helpful in keeping your child from overheating while enjoying outdoor summer fun.  One of the easiest and least expensive is a cooling neck wrap which is simply soaked in water and draped around the neck.  For Maddie the temperature difference is a drop of two degrees.  Frogg Toggs has come out with a towel that looks like it works similarly.  I have not tried it.  Maddie’s favorite would have to be watermisting fans.  These accessories have helped us a great deal over the years.   As tempting as it is sometimes to use ice to cool an overheated child, I have always avoided it because it seems like adding an extreme cold to a body that is already struggling with temperature.

Ironically, summer time is when Maddie has the most trouble with being too cold.  At a day camp once her temperature fell below 92 degrees just from being in a very cold air-conditioned room after swimming.  Consequently I am very careful about temperatures inside as well as outside in the summer time.  Try to pay attention to the location and direction air is flowing from vents to avoid sitting nearby.   Carrying a couple of blankets is helpful.  I generally keep one in Maddie’s bag and hang one over the back of her chair.  An electric heating pad is especially effective if you can find an outlet. 

On to the more fun things to help keep a body warm.  Since the most body heat is lost through the head, hats are a huge help.  Here is a chance to let your child’s personality shine.  Let him or her pick out the hats (they do not have to be dorky looking knit job) and they will be happy to wear them.  If you sew there a number of free hat patterns available like this hex hat.  Another trick I learned from a little girl in a hospital elevator is to wear baby leg warmers as arm warmers.  They are easy on and off and come in a variety of colors and patterns.  They are very fun!

It would be a terrible loss if our children were not allowed to enjoy all the summer fun just because of temperature regulation issues.   Such a child can enjoy summer fun without a temperature crisis if precautions are taken, warming and cooling accessories are within easy reach,  and attention  is paid to the environment.

*** Warning:  Never use a microwavable gell pack to warm or cool a child.  Significant burns can happen very quickly.