Worried/Sad/Disappointed and need to vent

[Kristi391]

So I have been planning a trip with my 7 year old niece and my cousin and her two teen girls for June 25. I was able to get 7 nights at Riviera through my cousin's brother's DVC for $12 a point, so my cousin and I are each paying $750, which is amazing. We got all the reservations we wanted, including BBB. Everything was perfect. Just had to get through the end of the school year and we'd be good to go.

Well, on June 1 (Thursday) my niece was having dinner at my house and she started to not feel great. I brought her home and she seemed to have a stomach bug and fever the next day and was kind of run down, but seemed better on Sunday and participated in her gymnastics exhibition. The next day she came home from school and slept until 7 pm then slept until 10 am the next morning. She got off the bus that afternoon and seemed tired but wanted to go to the library and playground, which we did. The next day was ok until after lax practice when her fever was back. She went to the dr the next day. Negative for flu, c19, and strep. Dr said there is a virus going around lasting 7-10 days. The next day she was ok and seemed ok most of last weekend. Monday she had a fever again and went back to the dr for blood work to check for mono and lyme. Her white blood cells are high (along with a bunch of other tests). That same afternoon the dr wanted her back in for urine and a chest xray but didn't tell SIL what she was thinking, but when pressed she said she wanted to rule out meningitis. They went back in that afternoon and the dr set up and appointment for yesterday afternoon marked "urgent". They went but didn't get any answers, just that they needed cultures. Niece seemed fine yesterday afternoon. This morning when I texted my SIL to see how she was doing she said, "She went to school" which I took as a great sign. But when I called my nephew after school to chat with him about his day, he said niece came home from school early, so I texted ,my brother to see how she was doing and he just said "Not great". He said he still hadn't heard from the dr but she didn't have a fever.

At this point we have no answers and I am so worried about my niece. I did the worst possible thing and googled some of the test result stuff that came back abnormal and some of her symptoms (on and off fever, headache, swollen glands, lethargy) and I get results running the spectrum of common cold to cancer.

I just am frustrated and worried because we don't know what is going on with her and I don't know what I am going to do about vacation. Everything is paid for and because I am traveling with my cousin and her daughters, I can't just move those points to another date because they will still want to go. I will do whatever I need to do to take my niece when she is well enough to travel. I think I can take her off the plane reservation and use that credit for an upcoming trip (SW) and I have some credit so I could use that then as well. Some people are saying I should still go in June since it is already paid for (I have an AP, so park tickets won't be an issue for me when she can go) and it will be a good getaway. I can't make that decision until we get more answers, but I know I will be super sad to be down there without her.

Just so stressed. Thanks for listening.

 

[fla4fun]

So I have been planning a trip with my 7 year old niece and my cousin and her two teen girls for June 25. I was able to get 7 nights at Riviera through my cousin's brother's DVC for $12 a point, so my cousin and I are each paying $750, which is amazing. We got all the reservations we wanted, including BBB. Everything was perfect. Just had to get through the end of the school year and we'd be good to go.

Well, on June 1 (Thursday) my niece was having dinner at my house and she started to not feel great. I brought her home and she seemed to have a stomach bug and fever the next day and was kind of run down, but seemed better on Sunday and participated in her gymnastics exhibition. The next day she came home from school and slept until 7 pm then slept until 10 am the next morning. She got off the bus that afternoon and seemed tired but wanted to go to the library and playground, which we did. The next day was ok until after lax practice when her fever was back. She went to the dr the next day. Negative for flu, c19, and strep. Dr said there is a virus going around lasting 7-10 days. The next day she was ok and seemed ok most of last weekend. Monday she had a fever again and went back to the dr for blood work to check for mono and lyme. Her white blood cells are high (along with a bunch of other tests). That same afternoon the dr wanted her back in for urine and a chest xray but didn't tell SIL what she was thinking, but when pressed she said she wanted to rule out meningitis. They went back in that afternoon and the dr set up and appointment for yesterday afternoon marked "urgent". They went but didn't get any answers, just that they needed cultures. Niece seemed fine yesterday afternoon. This morning when I texted my SIL to see how she was doing she said, "She went to school" which I took as a great sign. But when I called my nephew after school to chat with him about his day, he said niece came home from school early, so I texted ,my brother to see how she was doing and he just said "Not great". He said he still hadn't heard from the dr but she didn't have a fever.

At this point we have no answers and I am so worried about my niece. I did the worst possible thing and googled some of the test result stuff that came back abnormal and some of her symptoms (on and off fever, headache, swollen glands, lethargy) and I get results running the spectrum of common cold to cancer.

I just am frustrated and worried because we don't know what is going on with her and I don't know what I am going to do about vacation. Everything is paid for and because I am traveling with my cousin and her daughters, I can't just move those points to another date because they will still want to go. I will do whatever I need to do to take my niece when she is well enough to travel. I think I can take her off the plane reservation and use that credit for an upcoming trip (SW) and I have some credit so I could use that then as well. Some people are saying I should still go in June since it is already paid for (I have an AP, so park tickets won't be an issue for me when she can go) and it will be a good getaway. I can't make that decision until we get more answers, but I know I will be super sad to be down there without her.

Just so stressed. Thanks for listening.

 

[Inked Chick]

So I have been planning a trip with my 7 year old niece and my cousin and her two teen girls for June 25. I was able to get 7 nights at Riviera through my cousin's brother's DVC for $12 a point, so my cousin and I are each paying $750, which is amazing. We got all the reservations we wanted, including BBB. Everything was perfect. Just had to get through the end of the school year and we'd be good to go.

Well, on June 1 (Thursday) my niece was having dinner at my house and she started to not feel great. I brought her home and she seemed to have a stomach bug and fever the next day and was kind of run down, but seemed better on Sunday and participated in her gymnastics exhibition. The next day she came home from school and slept until 7 pm then slept until 10 am the next morning. She got off the bus that afternoon and seemed tired but wanted to go to the library and playground, which we did. The next day was ok until after lax practice when her fever was back. She went to the dr the next day. Negative for flu, c19, and strep. Dr said there is a virus going around lasting 7-10 days. The next day she was ok and seemed ok most of last weekend. Monday she had a fever again and went back to the dr for blood work to check for mono and lyme. Her white blood cells are high (along with a bunch of other tests). That same afternoon the dr wanted her back in for urine and a chest xray but didn't tell SIL what she was thinking, but when pressed she said she wanted to rule out meningitis. They went back in that afternoon and the dr set up and appointment for yesterday afternoon marked "urgent". They went but didn't get any answers, just that they needed cultures. Niece seemed fine yesterday afternoon. This morning when I texted my SIL to see how she was doing she said, "She went to school" which I took as a great sign. But when I called my nephew after school to chat with him about his day, he said niece came home from school early, so I texted ,my brother to see how she was doing and he just said "Not great". He said he still hadn't heard from the dr but she didn't have a fever.

At this point we have no answers and I am so worried about my niece. I did the worst possible thing and googled some of the test result stuff that came back abnormal and some of her symptoms (on and off fever, headache, swollen glands, lethargy) and I get results running the spectrum of common cold to cancer.

I just am frustrated and worried because we don't know what is going on with her and I don't know what I am going to do about vacation. Everything is paid for and because I am traveling with my cousin and her daughters, I can't just move those points to another date because they will still want to go. I will do whatever I need to do to take my niece when she is well enough to travel. I think I can take her off the plane reservation and use that credit for an upcoming trip (SW) and I have some credit so I could use that then as well. Some people are saying I should still go in June since it is already paid for (I have an AP, so park tickets won't be an issue for me when she can go) and it will be a good getaway. I can't make that decision until we get more answers, but I know I will be super sad to be down there without her.

Just so stressed. Thanks for listening.

I will be praying. Try herbal remedies. Look them up. Also, check if she has any cuts or was somewhere she shouldn't have been. Might have picked up something. Big thing to do is support her immune system so it can do what it needs to do.

 

[disneydreamer1980]

This is terrible, hope she feels better. If they’re concerned with meningitis hopefully they do a spinal tap. Your trip is still 2 weeks away, hopefully she’ll feel better by then. Odds are it’s just some kind of virus and it will pass. Im a pediatric nurse practitioner and viruses can have strange and lingering symptoms. If she ends up not being able to go, as it’s already booked and paid for hopefully you still go and have fun with your cousins.

 

[Kristi391]

Thank you for your kind words. Since I wrote this I have learned that she has an appointment with a rheumatologist in Boston tomorrow and her mom has a call with an infectious disease Dr from Children's hospital, so at least she is getting seen quickly and Children's Hospital is great.

 

[DLgal]

Hope your niece is okay.

I wouldn't make any decisions about the trip for at least another week.

 

[Inked Chick]

Thank you for your kind words. Since I wrote this I have learned that she has an appointment with a rheumatologist in Boston tomorrow and her mom has a call with an infectious disease Dr from Children's hospital, so at least she is getting seen quickly and Children's Hospital is great.

Fantastic. Keep us updated

 

[HopperFan]

Positive thoughts for her!!!


If she is unable to go something popped in to my head. One trip with DS, DD and my Mom as we were leaving for our trip found out my young cousin (teen) was in a very serious car accident and she was in ICU. Here we are heading to our happy place with a heavy heart, but there was nothing we could do to help so we went.

We bought one of the Autograph Books and on the inner cover wrote big something like "Get Well Mary" and we went to lots of characters. We explained she was in an accident and fighting injuries and could they write her a note. They did such a great job of writing her personal notes of get well. When we got home we gave it to her with some other goodies. Once she could read through it she loved it.

 

[BroadwayHermione5]

I hope your niece feels better soon!

 

[Kristi391]

Positive thoughts for her!!!


If she is unable to go something popped in to my head. One trip with DS, DD and my Mom as we were leaving for our trip found out my young cousin (teen) was in a very serious car accident and she was in ICU. Here we are heading to our happy place with a heavy heart, but there was nothing we could do to help so we went.

We bought one of the Autograph Books and on the inner cover wrote big something like "Get Well Mary" and we went to lots of characters. We explained she was in an accident and fighting injuries and could they write her a note. They did such a great job of writing her personal notes of get well. When we got home we gave it to her with some other goodies. Once she could read through it she loved it.

This brought tears to my eyes. What a fabulous idea!

 

[Rogue1677x]

Yes, Children's Hospital in Boston is great and even better that she got an appointment so quickly.

Positive thoughts for your niece.

 

[Mama Bear Me2]

So I have been planning a trip with my 7 year old niece and my cousin and her two teen girls for June 25. I was able to get 7 nights at Riviera through my cousin's brother's DVC for $12 a point, so my cousin and I are each paying $750, which is amazing. We got all the reservations we wanted, including BBB. Everything was perfect. Just had to get through the end of the school year and we'd be good to go.

Well, on June 1 (Thursday) my niece was having dinner at my house and she started to not feel great. I brought her home and she seemed to have a stomach bug and fever the next day and was kind of run down, but seemed better on Sunday and participated in her gymnastics exhibition. The next day she came home from school and slept until 7 pm then slept until 10 am the next morning. She got off the bus that afternoon and seemed tired but wanted to go to the library and playground, which we did. The next day was ok until after lax practice when her fever was back. She went to the dr the next day. Negative for flu, c19, and strep. Dr said there is a virus going around lasting 7-10 days. The next day she was ok and seemed ok most of last weekend. Monday she had a fever again and went back to the dr for blood work to check for mono and lyme. Her white blood cells are high (along with a bunch of other tests). That same afternoon the dr wanted her back in for urine and a chest xray but didn't tell SIL what she was thinking, but when pressed she said she wanted to rule out meningitis. They went back in that afternoon and the dr set up and appointment for yesterday afternoon marked "urgent". They went but didn't get any answers, just that they needed cultures. Niece seemed fine yesterday afternoon. This morning when I texted my SIL to see how she was doing she said, "She went to school" which I took as a great sign. But when I called my nephew after school to chat with him about his day, he said niece came home from school early, so I texted ,my brother to see how she was doing and he just said "Not great". He said he still hadn't heard from the dr but she didn't have a fever.

At this point we have no answers and I am so worried about my niece. I did the worst possible thing and googled some of the test result stuff that came back abnormal and some of her symptoms (on and off fever, headache, swollen glands, lethargy) and I get results running the spectrum of common cold to cancer.

I just am frustrated and worried because we don't know what is going on with her and I don't know what I am going to do about vacation. Everything is paid for and because I am traveling with my cousin and her daughters, I can't just move those points to another date because they will still want to go. I will do whatever I need to do to take my niece when she is well enough to travel. I think I can take her off the plane reservation and use that credit for an upcoming trip (SW) and I have some credit so I could use that then as well. Some people are saying I should still go in June since it is already paid for (I have an AP, so park tickets won't be an issue for me when she can go) and it will be a good getaway. I can't make that decision until we get more answers, but I know I will be super sad to be down there without her.

Just so stressed. Thanks for listening.

Sorry to hear this. Sending you and your family good thoughts. Hope the doctors can figure out what's going on with your niece and wishing her a speedy recovery.

Just a layman's guess ... do you think your niece could have come in contact with a tick? Lyme Disease?

 

[Kristi391]

Sorry to hear this. Sending you and your family good thoughts. Hope the doctors can figure out what's going on with your niece and wishing her a speedy recovery.

Just a layman's guess ... do you think your niece could have come in contact with a tick? Lyme Disease?

Thank you. She was tested for mono and Lyme during testing on Monday. Both negative.

 

[Giraffe_Zen]

Keeping my fingers crossed for her and for all of you. I hope they are able to figure out what is ailing her and help her feel better.

 

[disneyfan150]

Hoping for a speedy recovery! Hoping it is a virus as Dreamer1980 suggested it could be and it will pass now. Sending hugs your way.

 

[Kristi391]

OP here-Update

So, lost of tests today, few answers. They were called in to the hospital early so they could do an echocardiogram before the rheumatology appointment. The doctor also told them not to panic, but he wanted more imaging after the appointment. And more blood. Despite all these tests, they can't find anything other than lots of inflammation in her little body. They said that her levels are still concerning but they don't match anything. They ruled out lupus and some other disease that I don't recall the name of. The doctor seems to think that it might just be a weird virus that needs to run its course. He also said that he thinks she will be able to go to Disney if she is feeling well enough to do so. He said she is not contagious and going will not harm her, but if she is not feeling great, she might not have a good time. She has a telehealth appointment with the infectious disease doctor, who is working with the rheumatologist, next Wednesday and then going back to the rheumatologist on Thursday. Then cautiously optimistic that we will be able to go on Sunday.

It definitely seems like she is slowly getting a little better. Some of her blood numbers, such as her white blood cells, are heading in the right direction. Her fevers have been slightly lower and her energy level has seemed higher the past two days. I just got off FaceTime with her and she seemed a little sleepy, but I think the 17 vials of blood that were taken today might tire someone out (especially when they only weigh about 40lbs) and she was in good spirits (she wanted to show me her Mary Blair art project!) So, as of right now, I am thinking that if she continues to improve and still wants to go (her only question for the doctor was if she could go) we will go, but I plan to go at a much slower pace, lots of rest breaks, and probably rent a stroller in the parks so walking doesn't zap her energy.

Thanks again for all the well wishes. I really appreciate it.

 

[SueM in MN]

OP here-Update

So, as of right now, I am thinking that if she continues to improve and still wants to go (her only question for the doctor was if she could go) we will go, but I plan to go at a much slower pace, lots of rest breaks, and probably rent a stroller in the parks so walking doesn't zap her energy.

Thanks again for all the well wishes. I really appreciate it.

Sending good wishes

just wanted to let you know that you can get a stroller tagged ‘Stroller as wheelchair’ at Guest Relations or one of the blue Guest Experience umbrellas.
That would allow the stroller to be taken in lines and buildings where strollers are not normally allowed. Strollers rented from the park need to be tagged each day/time you rent one. If you rent from one of the off-site companies, it would only need tagging once. Renting from off-site, you’d also have the stroller for getting around the resort and to/from the park to bus or car.

 

[Kristi391]

Sending good wishes

just wanted to let you know that you can get a stroller tagged ‘Stroller as wheelchair’ at Guest Relations or one of the blue Guest Experience umbrellas.
That would allow the stroller to be taken in lines and buildings where strollers are not normally allowed. Strollers rented from the park need to be tagged each day/time you rent one. If you rent from one of the off-site companies, it would only need tagging once. Renting from off-site, you’d also have the stroller for getting around the resort and to/from the park to bus or car.

Thank you. This is good information.

 

[Kristi391]

Another update.

Whatever this kid has is so up and down, which is what makes it so frustrating! Yesterday, I texted SIL in the am really expecting that niece would have been doing well and was off to school. Nope, temp of 102 and some vomiting up some mucous. I was so sad. I texted with my cousin about some of our vacation options and we made plans to get together later on that night to discuss further. That afternoon I texted SIL again to find out how niece was doing and I was told at 10 she felt fine, got dressed, brushed her hair and teeth and asked to be brought to school. The doctor has said that she can/should be doing anything she feels well enough to do and that she isn't contagious, so she went. I stopped in when I got out of school and stayed with niece while sil went to drop off a fecal sample. In the two hours we were together, niece cleaned her room, set up a disco ball, made several dance videos, went out and rode her bike and we played several rounds of zingo.

When my brother got home I went to my cousin's house to talk about what to do about vacation. We talked about canceling or dropping a few nights to save money if niece can't go. We decided we are going to just wait a few more days and see where we are at.

The whole up and down aspect is so stressful. I am a bit fearful to text this morning to ask how she is today. I am assuming she will have a fever again when she wakes up and then feel better after she gets some Motrin into her, but who knows!

 

[lanejudy]

We talked about canceling or dropping a few nights to save money

Just to note … be sure to check any cancellation/modification rules. At this point you may not be able to “save money” by either option unless you bought some kind of trip insurance. Though any fully-unused ticket will hold as a credit towards new tickets for a future trip.

Good luck to your niece, I hope she’s able to shake this and move on!