What we have done, plan to do
Hello BreezeMommy,
Your family and I are in the same boat. Here's what we've done and what we are trying to accomplish.
My DD1 has severe Cerebal Palsey w/severe Athetoid movements and is total care. Living in the swamplands of Lousy-anna, we are prone to hurricanes, tornadoes, flooding, etc.
Our current plans are to always Bug In, if possible. In the event that we have to Bug Out, DD1 has a BoB in two parts.
Part 1 is the regular BoB with the usual equipment that goes with camping/Bugging Out.
Part 2 contains her diapers, chucks, wet ones, and vinyl gloves. Bugging Out requires us to toss ALL of her meds in the Part 2, along with clothing, personal hygiene items, etc.
Our future plans involve procuring a towable "toy box" camper. DD1's hospital Bed, potty chair, etc, would be secured in the toy box section of the camper, which has access between the toy box and the living area. I would attach an aluminum ramp to the outside doorway for her chair but am planning for the wheelchair to be stored at night in the toy box with her while she sleeps, if there is room. Otherwise, the wheelchair will have to be stored in the van when not being used.
DD1 has a Baclofen pump and we have had to deal with her in withdrawl symptoms when the Baclofen was cut off, recently. It is a full time job to care and feed her for the two of us under that situation. Liquid Baclofen is not a readily available drug to refill her pump with. Oral Baclofen is VERY rough on the stomach and she is limited to how much she can take and keep down long enough for digestion. We still have a large amount of the oral Baclofen if the liquid pump refill becomes unavailable and we would soldier on as best as we can. I also have a field surgical kit, seditives,, and a suture kit in the event that the pump would have to be removed and the catheter plugged.
If we are going to lose our DD1 due to a catastrophic disaster, it won't happen without a fight!!!! or from lack of prior preparation. I hope this gives you some ideas to apply to your situation!!!