My husband loved to give me a hard time when it came to medical supplies for our daughter. I had some hoarder tendencies. My collection was always well organized and kept tidy and clean. But at times a lot of stuff would start to build up. I did this on purpose. I knew that whatever I was stockpiling was not easy to get my hands on but was something that helped my daughter.
Quick disclaimer - check expiration dates! Some items (especially food related) will go bad. Do not accumulate more than you need of things that expire. You will risk using the bad items. For items that do not go bad, however, you can do a few things.
Find out how much your insurance allows your child to have each month. Let’s use the split 2x2 gauze that many of us use with feeding tubes as an example. Most insurance will allow 1 pack of 2 per day. A typical box comes with 30 packs of 2. If your child is anything like mine, that is not enough! Casey’s tube leaked a lot and we would go through these every few hours at best.
When we were in-patient, I would ask the nurses to bring me these every day. As many as they could. I also would set up alerts on medical supply groups to tell me when anyone offered up the items I needed. I would watch Amazon and other sites as well to see if/when the needed items would go on sale. I would buy as many as I could.
Casey’s doctors wrote letters to appeal to our insurance trying to get them to approve more each month since her site was so leaky. But we were never able to win that battle.
If you are in-patient, be sure to tell the nurses what your child needs and ask them to bring them to the room as often as they can. Many things that are opened in a patient room must be thrown out when the patient leaves. Or you can take them home with you. This could be packages of diapers, suction supplies, bottles of sterile water, bandage dressings, etc. Don’t leave these things to be tossed. Take them home with you.
Join medical supply groups. These are social media groups where parents will give away surplus items, or search for items in need. Find a few groups that fit your needs well and join them. Be sure to give back when you can, too. These groups are great when you need help with an item. And if you have a surplus of something that another family could use, remember that these groups work by giving as well as taking.
If there is something that you are not getting enough of, talk with your doctors. Ask them to help you with letters or calls to insurance to get more items covered each month. We won and lost many, but we never regretted trying.
After making the difficult decision to medicate your child, with time and on occasions, old symptoms return or new ones appear. Once again, you’re faced with what felt like an already-made decision - to medicate higher or more, or not.