Packing for Your Child’s Chiari Decompression Surgery

Like most parents whose children are scheduled for Chiari decompression surgery, I spent a lot of time figuring out what I needed to bring to the hospital. I wanted my daughter to feel as comfortable as possible, and I wanted to be prepared. I’ve compiled a list of things we used during our stay. Some are must-haves and some just made things a little bit easier.

  • Blanket/stuffed animal: It was very comforting for Allison to have her blanket and a stuffed animal that she sleeps with every night at home. Being in a strange environment is scary and having a piece of home with her put her at ease a little.
  • Kindle/iPad: Allison wasn’t up for much, but she did spend time on her devices. They kept her calm and distracted and were especially helpful when there was nothing on the TV she wanted to watch.
  • Snacks/food: I don’t think anyone likes hospital food and trying to feed a picky two-year-old was challenging. The hospital had a refrigerator in the room, so I brought food and snacks and didn’t rely on the food the hospital served. You also want to bring food for yourself. The hospital didn’t provide parent trays, and it was very difficult to go grab food when my daughter didn’t want me to leave her sight. Some food that I brought included mini muffins, graham crackers, granola bars, and trail mix.
  • Chargers: You’ll be spending at least a few days in the hospital, and everything will need to be charged at some point. Since my husband couldn’t be with us, we also video chatted with him often, which drained my phone battery. I brought a battery pack that could charge everything at once, so I only needed to locate one usable outlet.
  • Boo-boo buddy ice pack: This is something we use at home when the kids get hurt. They’re little cold packs that have dinosaurs or characters on them and the kids love them. The hospital had ice packs but my daughter wouldn’t use them because she didn’t know what they were. Having boo-boo buddies from home made her feel comforted and she was happy to use it.
  • Shower shoes and toiletries: I don’t know about you, but I would never step foot into a hospital shower without shoes on. You are going to want to shower while you’re there so bring shower shoes! I snuck into the shower at 4 am while Allison was sleeping and it felt so good. While the hospital was nice enough to give me a little care package with soap, toothbrush, shampoo, etc, I much prefer to use my own. 
  • Clothes for your child to go home in: I did pack clothes for Allison during the hospital stay, it was much easier to leave her in the hospital gown. When we were ready to be discharged, I dressed her in comfortable clothes that did not go over her head. I made sure to have pajamas and shirts that zipped or buttoned for the first few weeks after surgery. 
  • Clothes for yourself: Initially I thought I would pack minimally for myself since I didn’t need much to stay in the hospital. Then I remembered how many parents said their children threw up for days. I packed extra clothes for myself, knowing that if Allison threw up, it would most likely be on me. She also ripped out one of her IVs, which had blood squirting everywhere. I was very happy I decided to overpack.
  • Toys: While Allison didn’t want to play too much, there were times I needed to keep her entertained, and toys would have been helpful. Allison had her surgery on a Friday, and Child Life Specialists were not working on the weekend so I was on my own. I did pack a little present for her when she woke up from surgery to let her know how proud of her I was, which made her very happy.
  • Face masks and Lysol wipes/hand sanitizer: Once Allison was in the ICU I was able to take my mask off if I didn’t leave the room. Unfortunately, the bathroom was a shared bathroom and down the hall, so I needed to wear my mask to use it. I also needed a mask if I went down to the lobby or cafe. I brought Allison’s mask from home and thankfully I did because even though we were in a children’s hospital, they only had adult-sized masks. When they moved her to a different room or the physical therapist wanted to see her walk, we had to put a mask on her. I used the Lysol wipes and hand sanitizer a little excessively, but I didn’t want to take any chances. 

Trying to anticipate everything we would need was difficult, so my hope is that this list helps someone going through the same experience. If all else fails, rely on your nurses. Most of our nurses were extremely helpful which made a huge difference. They brought in crayons and coloring books, cookies, even bubbles if it would calm and distract Allison. One nurse even went down to the lobby to meet my husband who was bringing food for us, because Allison wouldn’t let me go. I am forever grateful to the nurses that really stepped up to help me and made our stay a little bit easier. Preparing myself mentally for the surgery was extremely stressful, and I realize now that packing for the hospital should not add to that stress. In the end, you make do with what you have or you find someone that can help you get what you need.