What to Bring to the Hospital
Last updated: June 2022
Previously I wrote about preparing for surgery and the considerations surrounding anesthesia and intubation. But when you have SMA there’s unfortunately so much more to think about and pack when going to any type of surgical procedure.
Packing for even a short visit
For me, it’s mostly medications and equipment: Xopenex for my nebulizers, my BiPAP for when I’m waking up, and g-tube formula and pump in case I’m there for more than a couple of hours.
These all seem like things a hospital should have or provide, but getting these things is surprisingly difficult whether you’re staying over in the hospital or in and out in one day. Instead of fighting with hospital staff or bothering doctors for orders, I always bring my own equipment which has never been a problem. Honestly, most of the time I’m thanked by the nurses since hospitals run low on supplies or occasionally can’t get a certain medication.
An example is the Xopenex I use for my nebulizer breathing treatments. Hospitals I visit stopped stocking this medicine and only offer Albuterol, which I can’t take because of an allergy. I was told back then to always bring it with me no matter how long I’m planning on staying.
Bringing my own BiPAP
This led to me bringing my own BiPAP as all my settings are already there and it prevents waiting for an order from my doctor and then another wait for the respiratory therapy team to bring the equipment. On top of that, assistive breathing devices are in low supply because of COVID-19, so that’s another reason to bring your own BiPAP or vent.
Before the day of my procedure, I make a list of the equipment and supplies I’ll need and pack those up. For my BiPAP, I know to bring the backup machine I use for traveling as well as all the tubing and nasal pillows. If I’m planning on doing a g-tube feed after surgery, then I pack a couple cartons of formula, a bag to put the formula in, the small feed pump, and a syringe to flush with water before and after. I even found a backpack that holds all my g-tube supplies and has a place to hang the bag inside and run the tubing.
So many bags
Sadly, the number of bags I bring to surgery day looks like luggage for a weekend vacation, but everything is a necessity or extra in case of an extended stay. My point is, don’t feel bad or think you can’t bring your own equipment to a hospital. You are entitled to the things you need to survive and most hospitals know they can’t effectively offer equipment in certain situations.
When I recently had my g-tube changed, there was an older man in the room next to me, waking up from his own procedure. He clearly had very bad apnea and a nurse asked if he had brought a CiPAP or if there was a family member who could bring one. So, it’s not just people with disabilities who need to prepare.
We could also argue that hospitals should have better processes, but we all know how bureaucratic administrators can be. It’s best to advocate for yourself, bring what you need, and ask for forgiveness than being caught in a life-threatening situation.
What assistive equipment, if any, do you have experience with?
Have you shared your SMA diagnosis story with us yet?