Hi all.
I have quite a few issues to figure out before a 10 day trip in October (for my 32nd birthday). I'd really appreciate any advice on any of them.
I have a form of muscular dystrophy: dysautonomic mitochondrial myopathy. I use a power chair, vent and inline oxygen, and have a trach, SP foley, ileostomy, G-tube and Hickman central line. I have a bunch of health issues.
I am driving down with my husband, who does a lot of my care, and another caregiver (call him DC) to help, so DH can have fun. We're staying on-site, in a one bedroom villa at OKW, so well have plenty of fridge space for meds and my IV nutrition. DH and DC are planning to stash many snacks there as well.
But we have a lot of questions.
Biggest issue, IV meds:
I have to receive a combo of four antibiotics and two antifungals IV, via my central line, every 48 hours at the infusion center of my hospital. It isn't a big deal to hook them up, etc., but we cannot carry a supply (short stability) and we cannot run them at home/ in the villa, because three can cause nasty and unexpected side effects. At least, I must have this done someplace with access to emergency care (EMS response/paramedic skills). At WDW, it would suck to waste not just the four hour infusion every 48 hours, but the commute to a hospital as well. My caregivers can run the infusions, and we have all our own supplies, including BP, pulse-ox, stethoscope and so on.
If we can arrange for the meds to be delivered by mail or a local infusion pharmacy, will First Aid stations in the parks allow us to infuse there? In the worst case, we'll need an ambulance and EMT care. Likely, this won't happen.
We also have 21 other meds given by IV push or piggyback into my line. Some we can leave in the room, but several must be brought with, and a few need refrigeration. Can we leave them at a First Aid station, and pick up unused ones at the end of each day, and can we give IV infusions that we CAN do alone if our timing doesn't have us in the villa on time? Our biggest concern is the timing on my seizure meds and the timing on starting my IV feeds (my other IV piggybacks are only 15 minutes each, and feeds we can just start and then take with us in a pack on my chair.) They have to be very consistent in timing. Are there stations throughout the park, or just one? We need someplace to give my IV push meds, and doing it outdoors/in a crowd is an infection risk. Does anybody know of sheltered, not overly crowded locations to use for push meds if First Aid is geographically impossible?
We have a similar issue with suction. We can't plan every trach suction, but we assume I'll need them every few hours at least. Can I leave extra supplies at First Aid?
Wheelchair size:
My vent, suction, vent batteries, liquid O2 and mini-nebulizer are on my attached vent tray or hanging from the back of my chair. Also, my chair has to be tilted/laid back to a 45 degree or so angle. If it is crucial, I can sit a bit more upright than that, but nowhere near 90 degrees. Will I still fit on the WC accessible rides?
Lines:
We can manage lines on the integrated wheelchair entrances with a sun shade (like a buggy hood), a mini fan on my chair, plus a cooling pack we carry for my neck; it is wonderful. Our problem is how to LEAVE lines. My big seizures are well-controlled with meds, smaller focal/partial complex/petit-mal can occur daily, and when they do, my caregiver often has to suction/hook up vent or ambu-bag if Im not on my vent, and potentially must give IV push Ativan. Wed need to leave the line quickly (I have attendant controls to make it easier.) Also, in a situation where heat was a factor, I needed care or I felt seizure aura or just unwell in some way, we'd prefer to leave the line and just come back to the attraction when I'm better. Is there a way to escape the middle of a line with a big, honkin wheelchair?
Restrooms:
I need someone to assist me in emptying my sp tube, g-drain and ileostomy bags, and to change me if necessary. Both my someones are male, so I guess we need a companion restroom. Emptying bags is not a prob. But is there anyplace in the companion bathrooms that we can use if I need a change? Im roughly 90-100 lbs and too tall for a folding baby/toddler table (and I am neither of those.) The floor isnt an option, even with Chux laid out. A solid counter would be fine, or a sturdy supported table. The seating system on my chair makes it not an option, even laid flat.
Disney Dining:
We have ordered the DDP for all three of us. Mostly, this is for my DH and DCs huge appetites. I get all my nutrition via my central line (TPN), and cannot take any oral or enteral nutrition. I do like tasting foods, mostly chewing and then spitting them out into Dixie cups. Chewing, even if I dont swallow, is tough for me after a few bites, so we figured Id order what sounded yummy, chew and spit some, and then divide my remaining unchewed food between DH and DC (they can happily eat their own meals and half of mine.) I know this sounds vile, but I miss food, and I try not to force innocent bystanders to watch. We are REALLY DISCREET, and we are careful if in public to not gross everybody out. We get odd looks, and on a few occasions, really curious questions from waitstaff (and once, blatant hostility because Im wasting food. I guess I am, but my nutritionist says it is good for my teeth and jaw muscles. And I like food!) Are the WDW restaurant CMs used to seeing strange stuff, or am I opening up to a barrage of questions or hostility twice a day for ten days? As I said, we are VERY CAREFUL to not make everybody else look at this, we use opaque cups, and Ziploc and throw away our own trash, my DH and DC are quick and neat feeding me, etc. Is it inappropriate for us to go to signature restaurants, or are we okay so long as were neat and unnoticeable?
And after only two pages I think thats it. Until I get nervous again and remember a bunch of stuff I left out. Sorry for the novella length, thanks for reading.
Im going back to Disneyworld! I am so excited.
DizWisher
me, 31 
DH, 37 
DC, 50
I have quite a few issues to figure out before a 10 day trip in October (for my 32nd birthday). I'd really appreciate any advice on any of them.
I have a form of muscular dystrophy: dysautonomic mitochondrial myopathy. I use a power chair, vent and inline oxygen, and have a trach, SP foley, ileostomy, G-tube and Hickman central line. I have a bunch of health issues.
I am driving down with my husband, who does a lot of my care, and another caregiver (call him DC) to help, so DH can have fun. We're staying on-site, in a one bedroom villa at OKW, so well have plenty of fridge space for meds and my IV nutrition. DH and DC are planning to stash many snacks there as well.
But we have a lot of questions.
Biggest issue, IV meds:
I have to receive a combo of four antibiotics and two antifungals IV, via my central line, every 48 hours at the infusion center of my hospital. It isn't a big deal to hook them up, etc., but we cannot carry a supply (short stability) and we cannot run them at home/ in the villa, because three can cause nasty and unexpected side effects. At least, I must have this done someplace with access to emergency care (EMS response/paramedic skills). At WDW, it would suck to waste not just the four hour infusion every 48 hours, but the commute to a hospital as well. My caregivers can run the infusions, and we have all our own supplies, including BP, pulse-ox, stethoscope and so on.
If we can arrange for the meds to be delivered by mail or a local infusion pharmacy, will First Aid stations in the parks allow us to infuse there? In the worst case, we'll need an ambulance and EMT care. Likely, this won't happen.
We also have 21 other meds given by IV push or piggyback into my line. Some we can leave in the room, but several must be brought with, and a few need refrigeration. Can we leave them at a First Aid station, and pick up unused ones at the end of each day, and can we give IV infusions that we CAN do alone if our timing doesn't have us in the villa on time? Our biggest concern is the timing on my seizure meds and the timing on starting my IV feeds (my other IV piggybacks are only 15 minutes each, and feeds we can just start and then take with us in a pack on my chair.) They have to be very consistent in timing. Are there stations throughout the park, or just one? We need someplace to give my IV push meds, and doing it outdoors/in a crowd is an infection risk. Does anybody know of sheltered, not overly crowded locations to use for push meds if First Aid is geographically impossible?
We have a similar issue with suction. We can't plan every trach suction, but we assume I'll need them every few hours at least. Can I leave extra supplies at First Aid?
Wheelchair size:
My vent, suction, vent batteries, liquid O2 and mini-nebulizer are on my attached vent tray or hanging from the back of my chair. Also, my chair has to be tilted/laid back to a 45 degree or so angle. If it is crucial, I can sit a bit more upright than that, but nowhere near 90 degrees. Will I still fit on the WC accessible rides?
Lines:
We can manage lines on the integrated wheelchair entrances with a sun shade (like a buggy hood), a mini fan on my chair, plus a cooling pack we carry for my neck; it is wonderful. Our problem is how to LEAVE lines. My big seizures are well-controlled with meds, smaller focal/partial complex/petit-mal can occur daily, and when they do, my caregiver often has to suction/hook up vent or ambu-bag if Im not on my vent, and potentially must give IV push Ativan. Wed need to leave the line quickly (I have attendant controls to make it easier.) Also, in a situation where heat was a factor, I needed care or I felt seizure aura or just unwell in some way, we'd prefer to leave the line and just come back to the attraction when I'm better. Is there a way to escape the middle of a line with a big, honkin wheelchair?
Restrooms:
I need someone to assist me in emptying my sp tube, g-drain and ileostomy bags, and to change me if necessary. Both my someones are male, so I guess we need a companion restroom. Emptying bags is not a prob. But is there anyplace in the companion bathrooms that we can use if I need a change? Im roughly 90-100 lbs and too tall for a folding baby/toddler table (and I am neither of those.) The floor isnt an option, even with Chux laid out. A solid counter would be fine, or a sturdy supported table. The seating system on my chair makes it not an option, even laid flat.
Disney Dining:
We have ordered the DDP for all three of us. Mostly, this is for my DH and DCs huge appetites. I get all my nutrition via my central line (TPN), and cannot take any oral or enteral nutrition. I do like tasting foods, mostly chewing and then spitting them out into Dixie cups. Chewing, even if I dont swallow, is tough for me after a few bites, so we figured Id order what sounded yummy, chew and spit some, and then divide my remaining unchewed food between DH and DC (they can happily eat their own meals and half of mine.) I know this sounds vile, but I miss food, and I try not to force innocent bystanders to watch. We are REALLY DISCREET, and we are careful if in public to not gross everybody out. We get odd looks, and on a few occasions, really curious questions from waitstaff (and once, blatant hostility because Im wasting food. I guess I am, but my nutritionist says it is good for my teeth and jaw muscles. And I like food!) Are the WDW restaurant CMs used to seeing strange stuff, or am I opening up to a barrage of questions or hostility twice a day for ten days? As I said, we are VERY CAREFUL to not make everybody else look at this, we use opaque cups, and Ziploc and throw away our own trash, my DH and DC are quick and neat feeding me, etc. Is it inappropriate for us to go to signature restaurants, or are we okay so long as were neat and unnoticeable?
And after only two pages I think thats it. Until I get nervous again and remember a bunch of stuff I left out. Sorry for the novella length, thanks for reading.
Im going back to Disneyworld! I am so excited.
DizWisher
me, 31 DH, 37 DC, 50
to both DisBoards and disABILITIES!
