I’m Wendy and in addition to being a baby/child sleep coach (I love helping families sleep), I care for my 5 year old daughter who was diagnosed with Crohn’s disease in September 2016. As we have been adjusting to life with IBD I’ve been journaling how I am spending my time. When our pediatric GI introduced us to ImproveCareNow I wanted to share my story to support others who may be going through a difficult time and to hopefully explain why I may be unintentionally ignoring friends and family.

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Here are 29 ways I have been spending my time:

  1. Focusing on parenting without indulging my sick child or neglecting my other children. How many toys should she get for every blood draw, sample produced, shot etc.? Are the other children feeling ignored? Should certain food treats be withheld from all kids, since my sick child can’t have them?
  2. Administering medicine. They don’t make what we need in a child’s formulation. Doses must be crushed and mixed, and we must remember the three different prescriptions she is on, plus all the supplements! Not to mention the liquid contrast prep for scans, as well; we have forgotten and miscommunicated this one too many times.
  3. Questioning pain management. I listen on the monitor to her moans as she is unable to sleep. I wait for the nightmares that she can’t seem to get rid of.
  4. Collecting stool samples. Everywhere and anywhere, whenever they happen – in port-a-potties, public restrooms, etc. I deliver these difficult-to-obtain samples to the lab, only to be told the orders aren’t there. I make frantic phone calls to the doctor’s office for a new fax to the lab, only to get the voicemail. I wait for the lab to receive new fax so we don’t have to return.
  5. Monitoring liquid intake to prevent dehydration and kidney problems. I am always watching my sick child’s weight to make sure she is maintaining. I fear she will not grow because of her Crohn’s, and have to stop myself from comparing her to her twin who is over two inches taller.
  6. Traveling back and forth to the pharmacy, calling ahead to order, picking up half orders, arguing with staff who forgot to order.
  7. Looking for support. I’ve sought out parental support groups, Facebook pages and groups. I’ve read so many horror stories and keep walking away from the computer for a break.
  8. Negotiating payments, insurance coverage, and financial assistance.  Did you know you have to do it for each different area – specialists, labs, hospital facilities, nutritionists, anesthesiologists?
  9. Filling out or deleting the many requests for survey feedback for every medical professional and facility.
  10. Finding child care for my other children while I am with my sick child at the doctor’s office or hospital.
  11. Reading, reading, and reading some more. I read about Crohn’s and the Specific Carbohydrate Diet, symptoms, surgeries, supplements, medications and certain treatments. And then I order more books and wait to pick them up from the library.
  12. Talking with medical professionals and other families. Recently we’ve been discussing whether to withhold food completely and tube feed, medicine choices, and/or attempting a highly restrictive diet.
  13. Stressing out. Lately it’s been about medical costs, new food expenses, keeping up with contacting the many different providers, scheduling payment plans and reviewing finances over and over to see what we can cut out.
  14. Grieving over what we may now face during our sick child’s lifetime, and the many things she may not be able to do. I also find myself fuming when we can’t get a timely response from a medical professional.
  15. Trying not to freak out over any changes I think I see in my child.
  16. Practicing self-care. I try to remove as many unnecessary demands from my plate as possible.
    When I can I rest, read, exercise, get acupuncture, massage, spend time outdoors, take hot showers, sit by my happy light.
  17. Logging on to medical portals to review doctors’ notes, waiting for responses, trying to remember passwords and user names for each place.
  18. Shopping for and preparing food. I shop at all new stores, and cook in a whole new way. Our dietician estimated it would take 8 hours/week. I find it takes me 3 hours/day. When I inevitably fail at this new way of cooking, I try again and again. I search out, study and print recipes online for hours at a time – from homemade yogurt and breads, to nut butters and flours. I am facing the reality that I will never get a break from preparing very specific food from scratch. Not one meal. Ever.
  19. Participating in research. Because my sick child is so young and her illness is so severe, multiple children’s hospitals want to conduct research using her information. Thus, I get to fill out forms, make phone calls, schedule and complete bloodwork, etc. Five year olds scream loudly at blood draws.
  20. Watching Craigslist for needed cooking supplies and cookbooks, as well as Crohn’s disease books – yay, found the yogurt maker, and I’m learning to use the new food processor and rotisserie.
  21. Consoling others. I have been communicating a lot with family members as they share their fears and grief. I want someone to console me.
  22. Calling and waiting, then calling back to get pre-authorization or results for each new test, procedure, scan or image.
  23. Wondering if someday I will have to homeschool my sick child. I spend a lot of time communicating with school staff to explain what my sick child can and cannot have for snacks and treats.
  24. Petitioning for insurance coverage to cover specific inflammation marker tests, being denied, then downloading sample letters to fit our situation to beg insurance to cover tests.
  25. Dealing with labs who accidentally perform wrong tests, having to re-submit samples all over again.
  26. Studying over and over again the ingredients listed on every food item my sick child eats, and checking online to see if unusual ingredients are illegal or legal for diet.
  27. Praying, praying, and praying some more. From altar team, to healing rooms, to prayer chains. From needing clarity and direction how we proceed, to wishing for the miracle of healing.
  28. Thanking God over and over that my sick child was diagnosed quickly, that she is doing so much better than others, that our doctor recommends and understands treatment through diet, for the medications and health insurance that are currently available to us, that we live in an area where we have amazing pediatric gastroenterologists, for understanding parents on Facebook support groups, and that I am able to be home to care for my sick child and cook all day.
  29. Being grateful for every day my daughter is not in the hospital, facing surgery; every moment she can laugh, smile and dance!

 

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