Household Preparation

Work Prep: Both my husband and I work full-time outside of the home, so now that we know the date of surgery we have started communicating these plans with our employers. We both will be fortunate enough to be with our daughter for the day of her surgery and following day. Then we have plans for my husband to return home and work for a few days before coming back to the hospital for the weekend. My job also has the flexibility that I can work on some of my paperwork more remotely from my laptop. So on days that she is just expected to be resting and recovering, I have the potential to work remotely which may help with the amount of time off I will need to request.

Pet Care: We also have dogs at home, so next we needed to make arrangements for their care. Thankfully our vet clinic offers boarding, so that was the route we decided to go at this time. We also live in a wonderful neighborhood with neighbors who have offered to help watch our house while we are gone.

Lodging: We have been in and out of hospitals over the years during our daughter’s NICU stay after she was born and various surgeries and specialist appointments. One of the biggest tips I have for surgery and appointment trips like this is to look into your hospital’s local lodging accommodations, like local Ronald McDonald Houses or similar facilities. These offer low-cost or free lodging accommodations for families who travel for medical appointments. They aren’t always the most elaborate of facilities, but for families who will be spending the majority of their time in the hospital or are just needing a bed to sleep in prior to an appointment or surgery, these facilities are a Godsend! Thankfully our hospital will all parents to stay overnight in her room after surgery, but I know that not all facilities allow for that or have the arrangements in your child’s room for staying overnight.

Preparing Our Daughter

Our daughter is 4 years old, and she is definitely at the stage where we have to do lots of work ahead of time to prepare her as best as we can for big events like this. Fortunately we were able to do several things that we feel like have mentally started preparing her for the upcoming surgery and hospital stay. We also planned for some fun surprises leading up to surgery day to help encourage her during that week.

Books are my favorite way to prep her for changes and new experiences! Here are the 3 books that we read to her!

• Going to Have Surgery: A Toddler Prep Book – We also used this book to help prepare her for the MRI appointment.
  • https://amzn.to/3UwAc01
• Sir Dr. Park and the Dragon Spasticity by RG Smith
  • https://amzn.to/4kRLaYJ
• My Big Brave Adventure: SDR Surgery – This was a social story that I created just for her and personalized with her pictures and name. We then just printed and laminated the story to read to her. I have a digital copy available, or send me an email and I am happy to personalize it for your child!
  • https://hopebetweenthehard.com/product/sdr-social-story/

We use lots of visuals in our house to help prepare our daughter for her daily and weekly schedules. We started by highlighting a monthly calendar with her usual schedule like different days for home days and school/daycare days. Next we used stickers to mark surgery day, and we crossed off each day on the calendar leading up to surgery. I also have started collecting pictures of family who will help care for her after we get home from the hospital, as well as pictures of her physical therapists for her intensive PT days. I plan to print these pictures off and use them on her daily visual schedule to help her know who she will be staying home with and which therapist she will be working with during PT.

We also started an Amazon list with lots of things that could help make her hospital stay and weeks of intensive PT more comfortable and encouraging.

Clothing:

• Grippy Slippers: https://amzn.to/4n5kIN2
• Nightgowns & Loose PJs
  • Disney Princess Nightgowns: https://amzn.to/47fhHVz
  • Stitch PJs: https://amzn.to/467w1hM
  • Moana PJs: https://amzn.to/4fVdvMT
• Soft Headbands: https://amzn.to/4fXR0XZ
• Encouraging Shirts
  • CP Won’t Stop Me: https://amzn.to/479ToIF
  • Keep Moving Forward: https://amzn.to/47kCsiR
  • God Says I Am… : https://amzn.to/4fUAYxZ
  • Girl You Got This: https://amzn.to/3HUXAlf
  • I Can & I Will: https://amzn.to/4fYlTLN
• Loose Shorts: https://amzn.to/4mwbOIj

Toys:

• Stitch Stuffy: https://amzn.to/4mTRoZu
• Small Inside Out 2 Figures: https://amzn.to/4lI0mIj
• Bluey Figures: https://amzn.to/45T720q
• Coloring and favorite reading books

Misc.:

• Electrolyte Packets: https://amzn.to/3UPXAG6
• Tablet &/or electronics for entertainment

Preparing Ourselves

Your mental health is just as important as your child’s medical care. If you are not taking care of yourself first and mentally preparing yourself for what this surgery will entail, it will be much more challenging to care for your child.

• Seek out advice from other parents who have gone through this surgery before. They are a wealth of knowledge! I sought out the advice and hearing past experiences from several parents of kids who went through SDR surgery. These parents gave tips for taking care of yourself as well as things that their children experienced post-surgery that their surgeons did not necessarily prepare them for.
• Reflect on your own previous experiences from your child’s medical care. Some parents can experience anxiety or may be triggered by different things during your child’s hospital stay, so being able to acknowledge those triggers can help you plan in advance. Some parents may be triggered by all of the monitors and beeping. Some parents may feel very anxious during the waiting period while their child is in the operating room. Some parents may need to make arrangements for taking breaks during their child’s hospital stay.
  • Personally, I anticipate that waiting for our daughter’s surgery to be done with be especially difficult for me. My plan is to keep one of her favorite stuffies with me while we wait to hold, take frequent walks around the hospital, and seek out the hospital’s chapel.
  • I also plan to find spaces around the hospital where I can go outside, soak up some Vitamin D, and spend time near plants. That also tends to help keep me calmer.
  • If you can get a private waiting room for during your child’s surgery, I highly recommend it. This will be a long surgery, so being able to have a private place to wait rather than watching other families come and go during the day will be helpful!
• Start gathering books, games, names of podcasts, etc. to help keep you entertained while your child is needing to rest and recover.
• Have a list of people prepared who you can talk to during the hard moments. Whether that is a spouse, parent, other family member, or close friend, having a list of go to people ready ahead of time can help lessen the mental load of figuring out who to reach out to when you are feeling frustrated, lonely, or anxious.

It’s okay to feel like you are moving into the hospital with your child. Your comfort is just as important!

Ways That Others Were Able to Help

We also tried to incorporate ways that family, friends, coworkers, and church family could help us along the way.

• We posted on social media asking for encouraging notes and videos that we could share with our daughter before and after surgery.
• We created an Amazon List for items that would be helpful for her during the hospital stay and intensive therapies. We also shared this list on our social media posts because often times people will want to help with physical items too.
• Share Venmo or PayPal information so others can gift money if they choose. This could go to medical expenses, lodging costs, meals, and gas money.
• Share prayer requests with family, friends, and church members
• Ask people to help with things around your house while you are away. This could include watching your house, checking the mail, mowing the lawn, watching pets, etc.
• Ask someone to set up a meal train for when you get home or let others pick up grocery orders.

Blooming where we are planted,

A CP Warrior’s Mama