Greetings from California!  I jumped at the chance to work in California for a week.  It hasn't been exactly what I expected.  The nasty three digit temperatures are here, too.  But on the bright side, my rental car has air-conditioning which my Jeep does not.  So I should not complain too much about that.  Then there was the evening I came back to my hotel to find it surrounded by a SWAT team because a shooter was holed up in a room.  Long story!

       The upshot is I'm hot and tired and need some inspiritation! And this dad has just the story to do the trick!
http://www.mlive.com/sports/grand-rapids/index.ssf/2011/05/byron_center_man_draws_inspira.html
I was denied permission to post the photo that accompanied the article.  Bummer! 

Helpful Link to Capable Kids Clubhouse

While on a search for coloring sheets which include differently abled children I discovered Capable Kids Clubhouse.  The site is produced by Easy Stand which happens to be the company which created on of Maddie's favorite things--her stander.  I think she would spend all day in hers if she was allowed to. 
      However, the site is much more than a sale spot.  It has awesome coloring sheets which include a diversity of children (YEAH!), a variety of articles of interest to caregivers of medically fragile children, games and songs for kids.  It is worth taking a few minutes to check it out at http://blog.easystand.com/capable-kids/.

"Don't Forget..."

Being a parent is not an easy job! Parenting is demanding physically, emotionally, socially, and financially.  It is a huge responsibility…all the time!  When parenting a medically fragile child things get way more complicated.  Add more worry, guilt, and responsibilities and huge consequences for errors to the load.  Add doctors, social workers, nurses, and my favorite schedulers who all think their priorities should be my priority.  Ahhhh!

In the face of great stress other people can be so helpful!  “Don’t forget to take care of yourself!”  Such words are often uttered when my child is critically ill in the hospital, I am facing a writing deadline that will determine whether I can pay the rent for the next three months, and I have a college student who is complaining about a paper that is not yet graded.  “Don’t forget to take care of yourself!” There have been many times when I have wanted to yell in return, “Just how am I supposed to do that?” 

I confess I started a list of things that would calm me down especially for stress in confinement, like an emergency room.  A cold drink, crunchy food, a trash novel, a Sudoku puzzle, and my child…okay so they were actually the tools I needed to sit still for the long hours of worry and waiting.  I had another list for actual hospital stays (I never leave Maddie for long).  Here are some of the things I have found helpful.

v  I have to remind myself to eat and sleep regularly.  If I don’t, I am easily overwhelmed and cranky.  The “to do list” in my head just has to wait for me to do those two things or even the simplest of tasks takes more time and energy than I can give.

v  I need to maintain relationships with friends who have a calming and strengthening affect on me.  When I am stressed, I avoid people who like drama or have a need to “fix” me.

v  I have adopted serenity spaces to take a short break.  For me the most effective spaces involve trees and outdoors (even when the snow is blowing).  I had to establish firm boundaries with the other people in my world about giving me time alone in those spaces.

v  I remember my grandparents raised children with far less money, space, options, and without a dishwasher!  They bring me strength and courage and gratitude for living in this time with my child instead of decades past.  

v  If I am looking at a long hospital stay, I do what I would at home.  I once created four huge backdrops for a children’s event host by a couple of museums, sitting right next to Maddie.  I have sewn clothes and props by hauling my sewing machine to Maddie’s hospital room.  I have written countless English lessons and graded a multitude of papers.  The work and the routine are important for my mental health as well as our financial well-being.

v  And every day, no matter what is going on, I get to take at least 15 minutes to do just what I want to do.  It might be dancing to a song that makes me happy, reading a junk novel, painting something silly, or taking a very hot bath and fantasying I’m on a cruise ship heading for Alaska.

As frustrating as it is to hear, “Don’t forget to take care of yourself,” it is important to figure out how to do that.  I am so aware that taking care of myself looks different than taking care of anyone else!  Once I knew what worked for me, handling whatever comes my way much easier.

Flexing in the Heat and Other Times

It is way too hot outside!  The heat is so frustrating!  At a level hanging around a 100 degrees and above for days on end is plain nasty.  Among many things I would like to do outside, I have a table and two dressers I’m anxious to be painting but they have to be sanded first.  Before I would have spent a whole lot of time being frustrated at the situation.   Now I just put outside work on hold and invest the time on other projects.  It really isn’t that big of a deal.  I just flex with the weather…and anything else that comes up.

 One of the gifts that comes from being the parent of a medically fragile child is flexibility.  All children reorder priorities, time, energy, and resources.  A medically fragile child tends to reorder things every day.  Sometimes it is frustrating, disappointing and lonely.  A single dad of a complicated little boy in Indiana said to me, “I love my son more than I thought was possible but it is like being on house arrest.”  He’s right. 

When you have a medically fragile child, the well being of the child comes first.  It means not going anywhere just because you take a notion to.  It means not going places when the weather is too hot or too cold.  It means staying home when the child does not feel well.  It means dropping whatever plans you have when another caregiver is not available or a nurse calls in sick.  It means rearranging work and vacation schedules to work in doctor’s appointments or a hospital stay.  All of that can leave parents feeling isolated and alone.

Which, of course, means that we have to be very intentional about some things.  I have found that I have to remember to call my friends just to keep in touch and to be the friend I have always been.  I may not be able to go out for lunch or catch an art show the way I used to but I can still talk, laugh, and share life with them.  I couldn’t get through most things without the love and support of my friends and family but in order to have them I have to be there even if it is just by phone.

Over the years I have learned to always have a plan B.  I think it was after I had to cancel date number two with a guy I was interested in that the disappointment nearly overwhelmed me.  After a major pity party with me as the only guest, I realized this was part of my life now.  I could either be miserable or I could learn to cope with the sudden plan changes that frequently occurred because of Maddie’s medical needs.  I learned the plan B method.  Always have something I can do and be happy doing ready at any moment.  It doesn’t have to be big.   Often it is a new book I am looking forward to reading, a DVD movie I haven’t seen, or a special project.  Usually just having that and loving to spend time with Maddie was enough to make up for whatever did not happen.

I, also keep a running list of things that I would like to do at home.  Not chores!  Fun things!  That is really how I ended up being an artist.  I wanted to make handmade paper so a friend taught me.  Soon I was making bunches of the stuff and moved on to finding ways to use it.  That was followed by searching the public library for art and craft books.  I continue the practice even today.  At the moment there have be at least ten projects I want to try.  Thankfully I am usually able to find a market for my work so it also is income producing.  But that is not how it started.  I started doing art because I was not able to go the places I normally would and do the things I enjoyed.  Art was my plan B.  Plan B days became like prized snow days, only I didn’t have to shovel us out!

Early on, I sought out support groups face to face and on line.  In the end, they were not as helpful to me as they might be to others.  For one thing, very few parents seemed to be dealing with a child with as complex issues as Maddie had.  At that time the disability of the day was Down’s Syndrome (much like autism is today).  The issues I was trying to deal with were so much more complicated and the future so much more uncertain. I tried a couple of face to face groups.  I soon discovered the childcare available for the groups did not include feeding tubes, seizures and other issues Maddie had.   In addition, the evening meeting times conflicted with Maddie’s evening treatments and bedtime.  There may be other options available that I am not aware of.   I think there are now different online supports that maybe available (I will be doing some research and will post them as I find them).  It would be worth taking the time to try to find some other parents raising medically fragile children. 

Having said that, I feel a need to give a word of warning.  These parents will be just as diverse as the general population.  Some will seem amazing in what they are doing and how they parent their child or children.  Learn from those. Others may be struggling to survive and have difficulties that seem overwhelming.  Coping skills of some include a lot of drama, rage, and various addictions.  Even though a desire to help maybe the first thought, it is important to maintain boundaries.  Parents of medically fragile children have more than enough issues to deal with without taking on the needs people in  unhealthy situations.    

Having a medically fragile child does not have to be a lonely frustrating experience!  It takes knowing yourself, maintaining friendships, and finding interests you can pursue with the resources you have.  It would be nice to find someone who is in a similar situation but that may not be as easy as it sounds.

If you have found ways to help you or your family, I and the other readers would love to read your comments. 

The Power of an Image!!

Used with permission of  the Different iz Good organization:  http://differentizgood.org/   This organization is working hard to make communication devices available to children who are unable to vocalize.  What an inspiration!!  You can find also find Different Iz Good on facebook.

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.