Do I Have CGD?
After Being Diagnosed
General Information about CGD
Support for Parents/Patients
Doctor Visits & Hospitalizations
Specific Infecting Organisms
Specific Disease Help
Your Time in the Hospital
Updates on CGD Patients (2011)
Updates on CGD Patients (2013)
Professional PID Links
Contact & Nonprofit Info
Your Time in the Hospital
Creative Approaches to Waiting
CGD patients and their families know what it is to wait. We wait in the clinic waiting room. Then we are ushered to a small clinic room where we wait to see the attending doctor. Often after that he/she exits and we wait for a team of doctors to enter. Parents, husbands/wives sit by the hour by hospital beds. Patients sit in bed bored with television, videos, etc.. Here are a few suggestions on Creative Approaches to Waiting, published by the National Institutes of Health entitled:
“Boredom Control” List
- Write letters and cards — to old friends, relatives, new friends - for holidays, birthdays, any days.
- Play cards.
- Listen to music on a cassette player.
- Work on a small puzzle (jigsaw, crossword).
- Draw or sketch — something in the room, something out of a magazine or book; favorite place or scene from your mind
- Read a book, magazine, or newspaper.
- Read a book to learn a new skill or concept.
- Look at the pictures in a book or magazine.
- Cut or copy recipes from a magazine.
- Organize your grocery coupons.
- Organize pictures into a photo album and share with friends.
- Begin a scrapbook.
- Redo your address book, telephone lists or Christmas card list.
- Balance your checkbook.
- Work on a personal budget.
- Sew, hem, or darn.
- Read professional journals and materials.
- Read a local newspaper.
- Pay your bills.
- Write in a journal or diary.
- Write poetry or a short story.
- Start a small craft project, i.e., needlepoint, leatherwork.
- Plan the week’s menu.
- Make week’s shopping list.
- “Finger walk” through catalogs — to order clothing, make Christmas list, order fruits and cheese, order birthday, anniversary, wedding gifts, or order seeds for a garden.
- Share an interesting or funny story with the person next to you.
- Plan your garden plot for flowers or vegetables.
- Plan home decorations.
- Update children’s medical records.
- Give yourself a manicure.
- Make a list of jobs to be done around the house.
- Make a list of needed supplies for your home.
- Plan a party or social gathering.
- Plan a trip or vacation.
- Do nothing and enjoy.
Tips for Staying “Sane” During Long Hospital Stays – written by Nancy Finkell
- Take a daily walk (regardless of the weather).
- Pack a sweatsuit for summer and T-shirt for winter. Hospital temperatures are always the opposite of outside. Also being on “pins and needles” awaiting test results often times makes one shiver and feel cold.
- Bring an attachable reading light so reading is possible while your child drifts off to sleep each night.
- Elastic waist, cotton knit clothes are comfortable hospital wear and are easy to launder.
- Take your out-of-town phone directory so you can keep in touch.
- Get a list of restaurants that deliver. Treat yourself!
- Ask for passes to leave the hospital for acceptable lengths of time. Take in a movie. Free passes are often available.
- Check out magazines, books, and movies from the hospital library....before the weekend! That’s when everything closes.
- Meet the other kids and parents. Share movies and pizza at night.
- Bring photos from home.
- Designate one bear as the “hospital bear.” He always goes for visits, tests, IV’s, surgery, everything.
P.S: Maybe others would add to my list. I always enjoy and appreciate tips from those who have been there/done that!
Help Wanted…Not Sure What Kind! – written by Nancy Finkell
Anyone who has been through CGD-related illnesses and the long hospital stays in and out of town as well as IV therapy at home knows what it’s like to be asked by friends and family, “What can I do to help?”
Sometimes we’re too exhausted to know just what we need or too disoriented in our minds and family life to formulate a request that might ease these desperate times. Those who haven’t experienced what it’s like to have your whole world turned upside down by a life threatening situation with a child are not always sure how to help. Here are some ideas you might want to consider sharing with them.
- Cook a homelike meal. Fast food and takeouts have become our mainstays. We’re suffering from lack of vegetables and fresh salads. The day is simply not long enough (nor am I energetic enough) to buy food and prepare it on the same day.
- Have your child pick up homework assignments and share school news!
- When I’m stuck at the hospital, please check in on my older child. She has places she needs to be, supplies needed for special projects at school, and sometimes a little help in algebra. If you can give her a lift, pick up something, or have her over for a meal or a movie, it would be wonderful. If she asks for help, please know it was difficult for her to call and ask.
- Volunteer to cut grass or vacuum and dust. When we get home from the hospital and things are fresh and clean, the situation doesn’t seem so bleak.
- Tons of even well-meaning phone calls can be exhausting. A written note or card in the daily mail lets me know you care and are available as needed. The big plus is I can read it when I really have a free moment and am not so stressed. I can also read it as many times as I want and need.
- Drop by for a moment. Assess the situation. You’ll see wonderful helpful things you can do that I’m too wiped out to realize.
P.S. Maybe others would add to my lists. I always enjoy and appreciate tips from those who have “been there, done that!”
Children's Music Fund
A wonderful organization, the Children’s Music Fund
(CMF) brings music instruments and provide music therapy to children and young adults who suffer from chronic conditions and life-altering illnesses across the land. They bring music to their life – in the hospital, at their home and regardless of their ability to pay – so it may help in their healing. CMF matches clients with highly skilled, Board-certified music therapists based on the needs and interests of the patient. CMF currently provides music therapy in five hospitals in California, Massachusetts General Hospital, Boston Children’s Hospital and Seattle Children’s Hospital. Their plan is to expand nationally. There is a form on the CMF’s website to apply for music therapy or for a musical instrument. The Children’s Music Fund is a 501(c)(3) non-profit organization who works primarily through volunteers and donations.