Home Health Services in Orlando....and any Disney with a port-a-cath/TPN advice!

[disfan07]

So we just made reservations for 4 nights in Disney in August. We will also be in another part of Florida for 5 days before that. We might be walking into some new territory for us and I'm hoping someone here will have experience with this..

We have travelled once before when I was on TPN but I had a PICC line and we went to Mayo Clinic so we had everything we needed for dressing changes at the hospital.

But now I have a port-a-cath for TPN (supplemental/cyclical....12 hours at night), occasional IV fluids, and iron infusions right now. We had hoped that by August I could go a week without my TPN or I would be completely off of it and would be able to be deaccessed for the trip but the way things are going, it's not looking good. And if I end up needed GI surgery before the trip, I will definitely need to be accessed 24/7.

So with about 3 months to go, we are trying to prepare for the chance that I will be on TPN at night, possibly fluids during the day, plus any other meds I might need.

At home, my nurse comes once a week to reaccess and change the dressing. She would do that the day before we leave but I would still need to get it changed once while in Orlando. I know my infusion pharmacy will ship the necessary supplies across the country for us so it's really just the dressing changes and what we do if we have problems with my port while there.

So for those who have travelled with an accessed port, what do you do about dressing changes and needle changes? I so wish we could bring my nurse with us but....not an option! And honestly, I have trust issues when it comes to letting anyone but my own nurse access my port.....which is something I'm working on!

Also, what about rides? I know the pool and water rides are off limits which really stinks in August. And I can't do roller coasters anyway so those don't matter. But I'm assuming that things like the fantasyland rides, haunted mansion, buzz light year, etc would all be okay with a port? We are only going to a Magic Kingdom so that's the only place where rides are an issue.

And any other advice about travel and Disney with a port would be awesome.
How was flying with the port and supplies?
Heat/sweating and the port?
Making sure the port doesn't get knocked into? I have dislodged the needle a few times in the past 6 weeks and I know if it accidentally gets knocked into it will probably hurt!

So yeah, any advice about Disney with a port, TPN, and/or IV fluids would be amazing!

 

[SueM in MN]

Work with your present infusion pharmacy and nursing service to have them help you set something up.
You will need to have doctor's orders for the care - you can't just have the care done without orders.
Since you have some time, you could possibly work on getting someone who will be going with you trained to do port care (access, de-access, flushing and dressing changes). Family members or friends can be safely taught how to do those things.

 

[disfan07]

Work with your present infusion pharmacy and nursing service to have them help you set something up.
You will need to have doctor's orders for the care - you can't just have the care done without orders.
Since you have some time, you could possibly work on getting someone who will be going with you trained to do port care (access, de-access, flushing and dressing changes). Family members or friends can be safely taught how to do those things.

Yeah my doctors are going to be working on the orders and everything else for the port-a-cath care.

Unfortunately, We can't have anyone but a nurse or physician do my port access, at least not for a while. It has something to do with the placement of my port. It's been a particularly stubborn port and we've had a lot of problems with accessing it. I do all of the daily care (flushing, TPN infusions, etc) but we were not given permission for anyone but a medical professional to deaccess/access it. That might change by the time we leave, but I highly doubt it.

My nurse is going to start figuring out what services are in Orlando. Luckily, the infusion pharmacy and nursing services are the same company so that should make things easier but it's a pretty small infusion company and pretty new so as far as I know, they actually don't deal with people traveling this far too often.

I was just curious if anyone here had used a particular home health service or had any suggestions on how to manage all of this. The reality is that we will not know exactly what we need until probably the week before we leave which is frustrating.

That, and we had planned to go back to Disney once I was done with all of this so the realization yesterday about how that's not going to happen and this new layer of stuff on top of my ridiculous food allergies and current respiratory issues we have to deal with has me a little overwhelmed.....

 

[joanchris]

My daughter has a port (I do all port care/access), we have, in the past, left it accessed for 8 and once even 9 days. I KNOW 7 days is recommended, but we had no problems the few times it was accessed longer. I believe the 9 days was while at Disney, I simply forgot to deaccess in the morning, then, when we got back later on I realized we'd be home in 36 hours, so just left it, deaccessed the morning we left and re-accessed when we got home.
It does sound like it might not be a big deal if you're same companies are in Orlando, though that might be easier said than done. I've found that many home nurses are not really skilled at central line care, amazing, really. Am so glad I PUSHED (and I did have to push) to be allowed to access my daughter's port. The surgeon was an older man, and saw no reason to allow it, while all of my daughter's other doctors didn't have a problem. So while the surgeon told the home nurse that he'd "sooner rip out the port than allow the parent to access it", her GI doctor signed the order to allow me to access the port. The only infections we've had with central lines have been when we had nurses taking care of things (and ONE during the almost 4 years I've been doing care).
As far as the pool/water rides, have you used aquaguard over the port/dressing? I wouldn't submerge with it, but certainly splash mountain type rides, as well as wading, splashing in the pool with an aquaguard dressing over the whole thing (best while not infusing, however, still do-able just for wading to protect from splashes) should be fine.
My daughter uses a wheelchair and only goes on rides where that can go on, so Buzz, Toy story would be fine. I imagine coasters would be fine too, except for maybe RnR with the overhead harness, which might push down on the port area and be painful.
If you need to disconnect while in the parks, you can go to the first aid station at the parks, it's nicer to do it in a cleaner environment than in a rest room or out in the open. I found it much easier to start my daughter's overnight infusion whatever time we got back to the room and if necessary, bring it to the parks in the morning and disconnect, rather than bringing a full bag with us all day, lugging a full bag around and then trying to connect at her regular time (7 pm) at night in order to finish "on time" in the morning. We are able to adjust times without negative health effects for her, no blood sugar issues or such, so changing times to fit our schedule worked well for us. tossing the empty bag while at the parks then just carrying the tiny pump and backpack was not a problem.

 

[sookie]

How about not going if your health is that fragile? Disney gives full refunds, and if you know NOW you can't be off fluids and TPN by August - cancel or reschedule your trip. If you (we - your parents I am guessing?) can't be bothered to be trained to access the port, if you have "trust issues" related to the port, if you can only have a nurse or physician access it... Don't go someplace where you are asking for trouble. There isn't a good solution to your problem. Vacation a shorter stay or someplace closer to home.

Common sense goes a long way in these situations. This almost sounds like you are trolling for trouble.

 

[TagsMissy]

How about not going if your health is that fragile? Disney gives full refunds, and if you know NOW you can't be off fluids and TPN by August - cancel or reschedule your trip. If you (we - your parents I am guessing?) can't be bothered to be trained to access the port, if you have "trust issues" related to the port, if you can only have a nurse or physician access it... Don't go someplace where you are asking for trouble. There isn't a good solution to your problem. Vacation a shorter stay or someplace closer to home.

Common sense goes a long way in these situations. This almost sounds like you are trolling for trouble.

OP, I know it sucks but maybe you should temporarily delay this trip until you can handle the ports yourself? thinking of your own health which superceeds any vacation.

 

[ksh1111]

Typing this on Kindle, so.forgive odd spacing please.


I have had 6 ports and countless PICC lines, & spent almost 2 years on TPN. I also traveled extensively during that time. I have had dressing changes done in 6 states, all by RNs that my home.health agency was able to help me locate. Once I broke a bag of TPN with lipids in a hotel.in Vegas. Pretty sure that carpet.was never the same!

The biggest issue will be how touchy your port is, with the needles.coming out. I was.continuously accessed, but only had a needle come out once. I.would take 4 X the dressings you think you will need, to layer on as they begin to peel up. If you are not.used to heat, I would guess you will need a dressing change after 3 or.4.days not 7.

Pack.a bag to carry on that is 100% medical & it won't count as your carry on bag.

Hope some piece of this helps.