Unexpected Disasters and Short Gut

When you have a child with a central line (CVL), life is a dance around the unexpected. It’s not a smooth waltz but rather an uncoordinated gyration. On our second night home from the hospital (for the first time ever in 9 months), we were woken by the sound of the fire alarm (followed very shortly by the smell of smoke). <panic, breathe, mobilize>


Thank goodness I had hung my son’s TPN in a backpack rather than on his IV pole, it made navigating down a flight of stairs much more seamless. But what happens when there is a fire, and the firehouse orders of ‘get up and get out’ only partially apply due to complicated medical needs? As in our case, IV bags, TPN supplies and Omegaven (a life-saving drug) are a must. We got our son out of the house and then I scrambled to gather everything we needed. Mind you we had JUST gotten home, so nothing was organized. It was a quick learning curve (by default). Now, this is How I stay ahead of crisis at home with TPN:

1) All supplies are stored in one central place
2) Omegaven is stored in an overnight bag so that we can just grab and go (this is a drug that can’t be shipped, so if we lost it in a disaster, we’d have to fly to Boston to get more)
3) I keep a small ‘roadie’ cooler in the central location so that I can easily load it with his TPN bags

4) I keep reusable ice packs frozen to add to the cooler on the fly

5) I have 3 emergency packs of TPN supplies already bagged and ready to go (so I don’t have to waste time sorting)

It’s important to practice the routine so that all players know their rolls in the drill.

Extra Tip:

Move your vehicle out of your driveway/parking space away from your home. This way if the emergency vehicles block you in, you can still get to the hospital in a flash of need be.

In the end, the smoke was a result of an electrical malfunction in the furnace and was contained to a few burnt wires and all was well. It was, however an excellent exercise to learn how we need to mobilize in times of flurry.

We have contacted our local fire department to let them know that our son is TPN dependent so they know of our special needs in times of crisis. They have also added us on the priority list for a generator and/or to be at the top of the list for power to be restored should it become lost.

Use your best judgement for how to keep you and your family safe in your individual circumstance. Safety First!


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