Disney with a disabled infant part 2

[amesyrn]

I had recently posted about taking our infant to Disney with a few concerns. Well recently she has gotten a bit worse, and the docs who were on board with us going are a bit concerned now. With one outright saying no... As we have a 6 yr old who desperately needs some special time, and who is totally looking forward to this upcoming trip. Not to mention the entire thing is payed for... We are trying to come up with a way to still go. I know to some this may seem irresponsible or what not. However as her mother and a nurse I really feel this trip will be good for everyone, including Alexa.

So now I'm trying to get all the info together to present to her docs so that they can see a complete picture of our plans in case of the worse case scenario. First thing is she will have a ton of medical equipment that we will bring from home (feeding pump, O2 and apnea monitor, suction, and ambu-bag) now she has oxygen at home but will not be allowed to bring this on the plane. So I was wondering if anyone knew if there was a place we could rent the oxygen for a while, or do we work something out with her medical supplies company? (we're still in the hospital so havent been able to contact them yet)

Also in the park has anyone had experience with having to utilize the paramedics? Is it hard for them to reach you? How long does it take? and which hospital would they likely take you too?

We're staying at the pop century resort and were wondering how close paramedics were from this hotel?

I know a ton of questions some of which I'm sure you wont have the answers too, but just trying to come up with the best case scenario for the worst.

Thanks in advance for any answers/tips.

Amy

 

[PrincessAndrea'sMom]

Hey there! I replied to your first post a few weeks ago. I have a trached daughter we took down at 8 months old. I am so sorry to hear your daughters condition has gotten worse. I understand the ups and downs of having a disabled child and spending alot of time in the hospital. I promise you, it will get easier as time goes on. If you don't mind me asking, what is your daughers condition? What type of nurse are you? Would you feel comfortable handeling an emergency until help could arrive?

I researched a few of your questions before we went last year. I have heard great things about Arnold Palmer Orlando Childrens Hospital, especially their ENT department. Also, for home care companies, we use Apria at home. There is also an Apria branch in Orlando. That was important to me incase we had an equipement or O2 emergency. Thankfully, we have no experience with paramedics!

It is so difficult to feel torn between two children, what is good for one and wondering if it is good for the other. My best advise would be to follow your gut. For me, I had to feel like I could totally care for her in any situation to feel good about going. Doing the research and having alot of contingency plans gave me piece of mind. Please feel free to PM me if you need someone to talk to about the difficult time you are going thru or if you have any more questions!

 

[Cheshire Figment]

If you do not yet have a relationship with an Oxygen supplier, I would suggest working with the Hospital's Social Worker to contact an Oxygen supplier in the Orlando area.

From any telephone on property dialing 911 will connect you immediately to Emergency Services. If you are in your Resort room you may have to to dial 9911 to first get the outside line. At the same time that Reedy Creek Emergency Services is dispatched messages also go out to Disney Security at your location, as well as management at your location is notified; in other words, lots of people show up very quickly.

If you have a map of property, Pop Century is off Victory Way, which runs from Wide World of Sports (at Osceola Parkway) North to Buena Vista Drive. One of the RCES Fire Stations is at the intersection of Victory Way and Buena Vista Drive.

The nearest hospital is Celebration Hospital. Again, if you have a map you will see the first North-South street West of Victory Way is World Drive, which runs through Main Gate right into Celebration, so it is only about two miles to the hospital with only four traffic lights from Pop Century.

That said, if there is an emergency, RCES might Evacuate to Orlando Regional Medical Center (near Orange Avenue and Kaley Street near downtown Orlando) which as the Winnie Palmer Hospital for Women and Infants, the Arnold Palmer Children's Hospital, and a Class One Trauma Center.

And let the airline know of the oxygen needs; they can work something out for you. Call the reservations number and ask for the Special Services Desk. Also, put all the medical equipment into one or two bags by themselves; these can be additional carry-ons and have no number limits as they are medical in nature.

 

[PrincessAndrea'sMom]

Are you flying Southwest? I know for a fact they WILL NOT make any excepts to allowing oxygen on board. They were great about letting all our equipment as carryons. We carried each of them on seperatly and it worked out great. We had everything in the stroller up to the gate. They let us preboard because it was essiential that we got sit together and have a place for all of our equipment. We could not bag any of it, because we used it during the flight. One flight attendand did give us a bit of a hard time with the suction machine. She said it might have O2 or it might be a fire hazard....She made a call and all was well. Apria is a great company to work with. I called our local branch and they gave me the name and number of the manager of the Orlando branch in case I needed anything. I don't know what your preferences are, but if there was a problem with my Andrea, I would only take her to a Children's Hospital. We have an excellent one her in Philly. There are alot of general hospitals that are not equipt to care for special needs children. I hope all this info helps you make an informed decision! (And I really hope you get to go, it was such a good family experience for us!) --Amy

 

[amesyrn]

Hey there! I replied to your first post a few weeks ago. I have a trached daughter we took down at 8 months old. I am so sorry to hear your daughters condition has gotten worse. I understand the ups and downs of having a disabled child and spending alot of time in the hospital. I promise you, it will get easier as time goes on. If you don't mind me asking, what is your daughers condition? What type of nurse are you? Would you feel comfortable handeling an emergency until help could arrive?

I researched a few of your questions before we went last year. I have heard great things about Arnold Palmer Orlando Childrens Hospital, especially their ENT department. Also, for home care companies, we use Apria at home. There is also an Apria branch in Orlando. That was important to me incase we had an equipement or O2 emergency. Thankfully, we have no experience with paramedics!

It is so difficult to feel torn between two children, what is good for one and wondering if it is good for the other. My best advise would be to follow your gut. For me, I had to feel like I could totally care for her in any situation to feel good about going. Doing the research and having alot of contingency plans gave me piece of mind. Please feel free to PM me if you need someone to talk to about the difficult time you are going thru or if you have any more questions!

Thank you. I dont mind you asking but unfortunately cant give an answer yet as my daughter has all the doctors stumped. She was born on time seemingly perfect but at 6 weeks we found her blue in her crib. We thought she had died, a few more seconds and she probably would have. Anyway from that time on things have just gone downhill. She frequently will just stop breathing needing to be recussitated, she stopped eating, and needs to be tube fed. She aspirates everything, but this is not related to her stop breathing. She has low muscle tone... Needless to say we are desperately trying to figure out what is going on. As these spells are becoming much more frequent and much more severe.(more difficult to get her breathing again)

I'm actually a travel nurse so have a lot of experience in many different areas. Although right now I'm my daughter's full time nurse. I would definately feel comfortable handling an emergency now as it happens quite often. I did look at the Arnold Palmer website it looks pretty good. We actually have been blessed to live right outside of Boston and she goes to Boston Children's hospital.

I truly do feel as though our entire family would benefit from some quality family time. Not interrupted by Alexa's many doctor appt. I feel like if we plan properly this could be a successful trip for everyone.

We do have a medical supply company already. I dont know if they have branches out in FL though they seem kinda small. I will be checking tomorrow. The case manager should also be coming in to talk to us so I'll see what she says.

From any telephone on property dialing 911 will connect you immediately to Emergency Services. If you are in your Resort room you may have to to dial 9911 to first get the outside line. At the same time that Reedy Creek Emergency Services is dispatched messages also go out to Disney Security at your location, as well as management at your location is notified; in other words, lots of people show up very quickly.

If you have a map of property, Pop Century is off Victory Way, which runs from Wide World of Sports (at Osceola Parkway) North to Buena Vista Drive. One of the RCES Fire Stations is at the intersection of Victory Way and Buena Vista Drive.

The nearest hospital is Celebration Hospital. Again, if you have a map you will see the first North-South street West of Victory Way is World Drive, which runs through Main Gate right into Celebration, so it is only about two miles to the hospital with only four traffic lights from Pop Century.

That said, if there is an emergency, RCES might Evacuate to Orlando Regional Medical Center (near Orange Avenue and Kaley Street near downtown Orlando) which as the Winnie Palmer Hospital for Women and Infants, the Arnold Palmer Children's Hospital, and a Class One Trauma Center.

And let the airline know of the oxygen needs; they can work something out for you. Call the reservations number and ask for the Special Services Desk. Also, put all the medical equipment into one or two bags by themselves; these can be additional carry-ons and have no number limits as they are medical in nature.

Thank you this was all very helpful info. We are flying jet blue so I will call them in the am as well.

 

[PrincessAndrea'sMom]

I am so sorry to hear of your daughers condition! That must have been the scariest thing in the whole world! I am my daughters full time nurse too! When is your trip? Maybe she will improve by then? My daughter has low muscle tone too. She is improving with physical therapy, but progress is very slow. She is 16 months old, 17 pounds and just beginning to sit. I really hope it all works out and your daughter gets well soon!

 

[amesyrn]

Thank you it is hard, as I'm sure you know. We're just so thankful we found her, and are able to tell her we love her everyday. Alexa has early interventions which is helping her as well. However she does not have any issues gaining weight. (we actually think her metabolism is kinda slow). We are plannig to go to Disney at the end of October. Alexa will be 10 mths old then.
Hopefully your DD starts catching up and doing better. They have to be tough little ones to go through what they have. Thanks again
Amy

 

[dis-happy]

My heart goes out to you and I hope your trip does come to be. My ds has had a myriad of issues but no formal dx has been made to date.

Just wanted to add that low muscle tone was an issue for us early on and please know that if you want to go on TSM that ride is very rough. However, you can ask to child swap which is what I did with my ds for about 18 months...they may not have a formal child swap but explain the situation and the CM's will be able to help you do it.

Wishing you the best....

 

[dclfun]

Sorry to hear of all the challenges your family is facing and of Alexa's medical concerns. I live in Orlando and can vouch for excellent pediatric care for SN children being nearby. I would definitely call the airlines about the 02- I thought you could use a concentrator, otherwise how could an oxygen dependent person ever fly? Definitely check with your medical vendor. I just switched from Baycare ( a smaller,local company) to Apria as Apria is everywhere so when I do travel there would always be a local branch. I'm on a vent ( no oxygen) and am getting ready to fly to Barcelona. They've been great finding out about the proper converter needed to charge my vent battery and also attach it to the wall socket with the different voltage. Check out the SATH website which is www.sath.org. There is a section there for airline travel. I haven't had a chance to check on the section "flying with oxygen" but I know it's there. I think the fact that you are a nurse means alot. You are very aware of the risks and benefits overall for your family.---Kathy

 

[amesyrn]

Thank you for the ride tip. I think that we will try to utilize the baby swap whenever possible. Although I'm sure there are some rides she will truly enjoy.

I will definately be checking out that website. Maybe I should look into changing medical suppliers as well. It's just that they read her monitor and download it for her docs, but I'm sure another supplier could do the same.

Thank you again for all the help. It's wonderful knowing there are others willing to help who may have been in our situation or one like it.

 

[Eeyore5]

I thought you might find these two web sites helpful since your daughter is undiagnosed

http://www.undiagnosed-usa.org/
support for families with a child that has a disability wit no diagnosis.


http://rarediseases.info.nih.gov/Resources.aspx?PageID=31
national Undiagnosed Diseases Program - tries to find a diagnosis

 

[amesyrn]

wow thank you for those web sites. I didnt realize there were so many kids that go undiagnosed. I always thought that if we keep looking we'll find an answer. It's nice knowing that we are not the only ones facing the fear of uncertainty. Thank you again.

 

[MarriedToAPrince]

I am so sorry you are dealing with all of this. I cannot imagine how scary it must to be have a healthy daughter and then all of this start. I hope that you are able to take your trip and enjoy it as a family.

 

[amesyrn]

Thank you we hope so too.

 

[PrincessAndrea'sMom]

Please keep us posted on Alexa's progress! Your family will be in my prayers.

 

[Nanajo1]

I was thinking if you had a trusted nursing friend who could travel with you. If you could entrust your angel with her/him for a couple of hours then your older child could have some specila time with the focus on her. I know that it would be hard but I feel for the "well" child. I was the "sick one" growing up and always felt bad when trips were cancelled because of me.
I hope you get a DX soon and your angel is well enough to travel.

 

[amesyrn]

I was thinking if you had a trusted nursing friend who could travel with you. If you could entrust your angel with her/him for a couple of hours then your older child could have some specila time with the focus on her. I know that it would be hard but I feel for the "well" child. I was the "sick one" growing up and always felt bad when trips were cancelled because of me.
I hope you get a DX soon and your angel is well enough to travel.

Thank you. We were thinking of having my parents travel with us, but dont think that will work out. We do try to take Kaylie our 6 yr old out on special dates when home. She knows she is well loved, but I want to give her some normalcy too. It is definately a hard balance, because you want to make up for everything that you havent been able to do but also keep guidelines in place. We're so blessed that she is so well adjusted. I'm really hoping this trip puts a little magic back in all our lives.

We have a family meeting with all the docs on Thursday so we will be discussing this upcoming trip along with our other concerns. Maybe They'll even let us go home then. Crossing our fingers anyway.

 

[amesyrn]

Thank you all for your tips and advice. We just got back from our trip and everything went so smoothly! Disney does such a great job of making the parks accessible for everyone. Alexa only had a few episodes of real concern, and didnt need to go the hospital. (first time since she got sick we were able to go 10 days without something happening...) We came close once when DH ran over her tube and broke it, but surprisingly it wasnt pulled out of her stomach (yay!). Thank you to the man who helped DH and offered to flag the paramedics. With the GAC we were able to do things and then let her rest so she didnt get too fatigued. We would go back to the hotel everyday so she could nap, and were able to have early days. However we felt were able to see and do everything we wanted too.

Our 6 yr old had so much fun... The most magical time was when she was dressed as Belle and we were dining with the princesses in Norway. Ariel took her hand throughout the parade. What a treat... But the best part of the meal was our waitress. She asked why the baby wasnt eating and if she could bring her anything she might like. We explained a little about our situation. She sort of hustled off, she was very busy. But she came right back with a cupcake with gummi bears for our DD6 with tears in her eyes, saying she wished there was more she could do. What I dont think she realized was that she already did it her kindness made our DD6 feel so special. DD6 still talks about that special cupcake. She thinks it was because she looked so beautiful in her Belle gown

We couldnt have asked for a better vacation. Everyone says not to expect too much so you wont be disappointed, but this exceeded all expectations. So much so that DH and I are seriously thinking about doing the DVC. We got to see our baby come a little into her own without so many MD appts. Our 6 yr old was able to just be 6 and we were able to reconnect as a family.

Thank you all for all your helpfulness.

 

[visitingapril09]

Thank you so much for coming back and updating.

See.....some Drs. only see the medical. They don't treat WHOLE families and this was probably the best medicine your family could have had prescribed. I know! We are in a similar situation except our son is 12 and still undiagnosed. We are going for 2 weeks in March!! I am so very glad that everything went well for you and hope that you will keep us updated on your sweet little angels.

 

[cm8]

Thank you all for your tips and advice. We just got back from our trip and everything went so smoothly! Disney does such a great job of making the parks accessible for everyone. Alexa only had a few episodes of real concern, and didnt need to go the hospital. (first time since she got sick we were able to go 10 days without something happening...) We came close once when DH ran over her tube and broke it, but surprisingly it wasnt pulled out of her stomach (yay!). Thank you to the man who helped DH and offered to flag the paramedics. With the GAC we were able to do things and then let her rest so she didnt get too fatigued. We would go back to the hotel everyday so she could nap, and were able to have early days. However we felt were able to see and do everything we wanted too.

Our 6 yr old had so much fun... The most magical time was when she was dressed as Belle and we were dining with the princesses in Norway. Ariel took her hand throughout the parade. What a treat... But the best part of the meal was our waitress. She asked why the baby wasnt eating and if she could bring her anything she might like. We explained a little about our situation. She sort of hustled off, she was very busy. But she came right back with a cupcake with gummi bears for our DD6 with tears in her eyes, saying she wished there was more she could do. What I dont think she realized was that she already did it her kindness made our DD6 feel so special. DD6 still talks about that special cupcake. She thinks it was because she looked so beautiful in her Belle gown

We couldnt have asked for a better vacation. Everyone says not to expect too much so you wont be disappointed, but this exceeded all expectations. So much so that DH and I are seriously thinking about doing the DVC. We got to see our baby come a little into her own without so many MD appts. Our 6 yr old was able to just be 6 and we were able to reconnect as a family.

Thank you all for all your helpfulness.