A Short but Not Sweet Trip Review *12-1 Pre-Trip Report Link

[DopeyDonald]

I just found your TR and read all of it. I am so sorry you are having to deal with all of this! Prayers for you and your little one.

Thanks! We are very blessed and lucky things turned out the way they did.

 

[DopeyDonald]

Just found your report! Wow! What a trip!!!

I'm pretty shocked about the "room doctor" pushing to get your daughter back to the park- but in his defense, that is probably what he is used to dealing with… of course, it sounds like if he had done a proper abdominal exam he would have realized the problem was a little deeper than vomiting!

I'm really surprised that the FL doctors didn't help you. Seeing as this is probably a very common problem (people coming for a vacation ending up in the hospital) they would have a system in place to help refer patients… then again, maybe the hospital that you were going to required a doctor with "admitting rights" be the referring doctor. I have worked on the billing side of health care systems for several years- I've long since stopped being surprised at hair-brained rules. It wouldn't hurt to call the Florida Children's hospital and ask to speak with a Patient Advocate and see what happened with the referral part. Hospitals are typically have people in place to take these complaints and deal with them.

I am so glad that your daughter is okay and that you are HOME!

Yeah, it was quite a trip - lol. We are still a bit shell shocked that it even happened.

As far as the room Dr. goes - I wanted to like him so bad - he made me feel very comfortable and I felt that he knew what he was doing, but after he started saying some of the things he did - I lost a LOT of respect for him. Tacky is the best word I can come up with. I was also put off that Disney was the ones that are hooked up recommending him and he's $115 more than the other service. Gotta be a kick-back there I imagine......I'm also a bit disappointed that I have not received a response from them and the email I sent them. I sent them a detailed email letting them know the rest of the story and my feed back about how I felt that they really lost some credibility when they talk about getting back into the parks and calling them for recommendations etc. He also was trying to be funny at the end of the visit - telling us to call him the next time we were on vacation even if we were well - just to say "ha ha" we don't need your services this trip! He said we really like to develop a friendly relationship with their clients. Well, I haven't heard a word back....

Also, in his defense, he did feel her abdomen and for as big as the cysts were they were not able to be detected by palpating. Even the Drs who were operating on her could not believe that her belly was not more pronounced. They were hiding behind her intestines and bowel.....

And I know I really should follow up with Childrens in Florida, but that kind of thing has never been my strong suit. Although they have called me about 4 times requesting I take a survey about how they did....

 

[crepemyrtle]

Wow. What an ordeal. I'm so glad y'all are home with your sweet girl, and wish the very best for you and your family. And for what it's worth (coming from a mom you've never met ) - I think you did everything right, and handled a horrible situation perfectly.

 

[TeresaNJ]

Oh my goodness, what a scare you all have had! Thank the Lord your daughter is doing well. So sorry for everything you all went through. I can't even imagine. Looking forward to hearing about your daughter's recovery!

 

[DopeyDonald]

Just found your report! Wow! What a trip!!!

I'm pretty shocked about the "room doctor" pushing to get your daughter back to the park- but in his defense, that is probably what he is used to dealing with… of course, it sounds like if he had done a proper abdominal exam he would have realized the problem was a little deeper than vomiting!

I'm really surprised that the FL doctors didn't help you. Seeing as this is probably a very common problem (people coming for a vacation ending up in the hospital) they would have a system in place to help refer patients… then again, maybe the hospital that you were going to required a doctor with "admitting rights" be the referring doctor. I have worked on the billing side of health care systems for several years- I've long since stopped being surprised at hair-brained rules. It wouldn't hurt to call the Florida Children's hospital and ask to speak with a Patient Advocate and see what happened with the referral part. Hospitals are typically have people in place to take these complaints and deal with them.

I am so glad that your daughter is okay and that you are HOME!

Yeah, it was quite a trip - lol. We are still a bit shell shocked that it even happened.

As far as the room Dr. goes - I wanted to like him so bad - he made me feel very comfortable and I felt that he knew what he was doing, but after he started saying some of the things he did - I lost a LOT of respect for him. Tacky is the best word I can come up with. I was also put off that Disney was the ones that are hooked up recommending him and he's $115 more than the other service. Gotta be a kick-back there I imagine......I'm also a bit disappointed that I have not received a response from them and the email I sent them. I sent them a detailed email letting them know the rest of the story and my feed back about how I felt that they really lost some credibility when they talk about getting back into the parks and calling them for recommendations etc. He also was trying to be funny at the end of the visit - telling us to call him the next time we were on vacation even if we were well - just to say "ha ha" we don't need your services this trip! He said we really like to develop a friendly relationship with their clients. Well, I haven't heard a word back....

Also, in his defense, he did feel her abdomen and for as big as the cysts were they were not able to be detected by palpating. Even the Drs who were operating on her could not believe that her belly was not more pronounced. They were hiding behind her intestines and bowel.....

And I know I really should follow up with Childrens in Florida, but that kind of thing has never been my strong suit. Although they have called me about 4 times requesting I take a survey about how they did....

 

[kimbo0569]

If I could make a suggestion, with the health of your daughter being what it was, I realize this may not be a priority right now, but I would definitely take the survey (if it's online or on paper), I would let them know exactly how you felt about what happened (or didn't for that matter). When things calm down, I would write a letter to their customer service department. In these times where customer service is more important than ever, they need to know where they did well, and in this case, where they fell short.

 

[shalom]

Wow. I feel a little shell shocked just reading this.

I know...I kind of feel weird making a trip report out of this, but I am doing it for a few reasons.

I think it will likely be helpful for others who may end up dealing with sick kids on vacation, but I really hope it also helps you to work it all through and feel a bit more settled about things.

St Paul Children's was the absolute best care I could ever even imagine receiving.

They have an excellent reputation; good to hear they lived up to it.

I was also happy with Disney for changing the name - I really wasn't sure that they would be able to do it. I suppose the fact that I was sobbing while talking to them helped... lol

Disney has a pretty good record about stepping up and working with people who are dealing with hospitalizations, but of course there's no guarantee. I'm glad they were willing to work with you.

 

[diznykidz]

Prayers to you and your little darling! So sorry that you have had to endure such a scary illness! I pray that Cassidy gets strong real soon! So glad that the Gma and Gpa were able to help out with the other two kiddos. It must have been so frightening to try and make those quick decisions so far away from home. We too live 3.5 hours North of Mpls. hard to get specialists this far north. Prayers and Pixie dust to you all for a speedy recovery!

 

[DopeyDonald]

If I could make a suggestion, with the health of your daughter being what it was, I realize this may not be a priority right now, but I would definitely take the survey (if it's online or on paper), I would let them know exactly how you felt about what happened (or didn't for that matter). When things calm down, I would write a letter to their customer service department. In these times where customer service is more important than ever, they need to know where they did well, and in this case, where they fell short.

Wow. I feel a little shell shocked just reading this.





I think it will likely be helpful for others who may end up dealing with sick kids on vacation, but I really hope it also helps you to work it all through and feel a bit more settled about things.






They have an excellent reputation; good to hear they lived up to it.




Disney has a pretty good record about stepping up and working with people who are dealing with hospitalizations, but of course there's no guarantee. I'm glad they were willing to work with you.

Prayers to you and your little darling! So sorry that you have had to endure such a scary illness! I pray that Cassidy gets strong real soon! So glad that the Gma and Gpa were able to help out with the other two kiddos. It must have been so frightening to try and make those quick decisions so far away from home. We too live 3.5 hours North of Mpls. hard to get specialists this far north. Prayers and Pixie dust to you all for a speedy recovery!

Thanks for all the well wishes. She had a great day today - she ate like she hasn't eaten for a long time - finally has some room in her little belly. She also was able to go to the bathroom - which was a HUGE step - lol One I'm sure that she'll appreciate I told complete strangers about.

 

[DopeyDonald]

I almost forgot....there was a vacation going on for some of our family while we were going through this....
Here's a few pics of what my kiddos were doing with Nana while we were laying at Florida Children's.....

They went to DTD shopping before heading to tea at the GF.

Tea at the Garden View Tea Room...I am SO SAD that we missed this. It's honestly what Cassidy was looking forward to the most - even more than Cinderella's Table. She knows that I took Annie to tea last year and it was very special and she couldn't wait because she was "old enough" this year.... I'm honestly not even sure why they kept the reservation - maybe too late to cancel, but they didn't enjoy it too much...Whereas Annie and I LOVED it last year. Next year I think I'll keep it special for just the girls and I...

And finally relaxing back in the room waiting for us to get back. Annie is enjoying her fave treat from Goofy's...

Here are the 3 kiddos - happy to be reunited. This was right after we were discharged from Florida Children's. It was Wednesday night and we were packing up for DH, Cassie and I to fly out the next morning.....

 

[DopeyDonald]

Finally the big day. I was able to get DH, Cassie and I on an 8am flight with Delta - direct to MSP. I wasn't able to get seats together, but figured I'd plead my case once we got there.

I was SO nervous about this flight. I honestly just was worried that something would happen with her 36,000 feet in the air and we would be so far from help. Turns out I worried for nothing - lol

We got up around 4:30am and got ourselves ready. Everyone else stayed asleep as they were up late waiting for my dad to arrive. He didn't land until 9:30 and then got majorly lost on the way - he ended up about 50 miles South of Disney So he hadn't gotten in until around 1am.

So we were ready to go out the door by 5:15am. I had purchased that red umbrella type stroller in the Mercantile the night before as I had rented a stroller this trip. I really wanted something for her to be pushed around in at the airport. It worked great. I laid it down, put her blankie in it and her on it and she never even woke up. That kid slept thru the loading of the van, the return of the van, the lines to check in, the lines at security, security, boarding, THE WHOLE FLIGHT and the landing. My sweet baby didn't wake up until we stepped off the plane!!! I am so thankful - I was a wreck the way it was and it helped so much to have her sleeping peacefully.

We had taken off at 8am in Orlando and landed in MSP at around 10:20 MSP time. My husband's company who is out of Minneapolis, had a car waiting for us to take us to St. Paul Children's. We were in the ER at St. Paul Children's by 11am. Not too shabby!

We got her checked in, IV started and Docs coming in the room right and left. She was seen by about 4 different specialists in the ER alone. A Ped Surgeon, A Ped Gynecologist (who knew these even existed), A Ped hemo/oncologist, and the ER doc. They were honest and told us that they had no idea what we were dealing with and couldn't tell us anything until they did an MRI.

They talked about different things it could be - at that point the CT scan was showing probable involvement of her ovaries - which pointed to some type of cancer - though the Ped Gyn told us that Ovarian cancer in kids is NOT as horrible as Ovarian Cancer in adults. I really appreciated their honesty - I would rather hear them say - let's wait until we have more info before we jump to conclusions.

She was taken for her 2.5 hr MRI around 2pm. She was obviously sedated for that. I was a bit nervous because on the ride from the airport she had had a few sips of coke. But I needn't have worried. As I was getting her settled for them to sedate her she worked herself up so much that she threw up.

Once they got her out, I quickly left to head over to the hotel room my husband's company had gotten for us. I checked in and showered, while my DH stayed in the waiting room at the MRI. I also got us some supper at BK and brought it back. I hadn't eaten all day - in fact I lost 6 lbs during all of this time...

A few minutes after getting back she was out and waking up. She did pretty good waking up and then we headed up to our room. The dr's weren't sure what was going to be happening so they admitted her for the night. (and I'm glad because our insurance covers ER visits 100% as long as the end with an admission)

We were up on the floor by around 6ish and my girl was HUNGRY. We had to wait for the Dr's to come and talk to us before she could eat though. They all came to our room about an hour later with AWESOME news. The mass was indeed a cyst - something called Lymphangioma. - which sounds ridiculously like something cancerous, but it's not. They assured us that this was a completely benign condition, but it was an urgent matter. These cysts can really wreak havoc with the bowels etc. Especially since hers was so large.

The Drs told us that she was perfectly healthy and in no immediate danger. Since it was now Thursday night, they gave us the option of going home for the weekend. We decided that would be a GREAT idea. 1. we had no clothes other than Disney/warm Florida vacation clothes. 2. It was her 5th Birthday on Saturday. 3. It would give my parents and other kiddos a chance to get home and be with us on surgery day. 4. It was just nice to have a break to digest everything that was going on.

They also gave her the green light to eat - she wanted pizza and oreos!!

Here she is coloring that night - my husband's company had also given us a HUGE goody bag with coloring books, toys and snacks for us. It had nuts, cheese, granola bars, bottled water, pretzels, and a million more thoughtful things in it.

We were discharged around 9am on Friday morning and headed home!

Here's how Cassidy felt about that....

This was right after her IV was taken out - she was a little put off by that....lol

I cannot describe how good it felt to be headed home with peace of mind. It was still going to be major intestinal surgery with the possibility of having a lot of bowel removed, but she didn't have cancer! I also cannot say enough good things about the people at St. Paul Children's. Seriously. EVERY single person we came in contact with was ABSOLUTELY AMAZING. I want to shout it from the rooftops. From the ER doc, to the MRI nurses, to the nurses on the floor, to the surgeons themselves - I felt like every one of them looked at her as though she was their child. I knew we were exactly where we needed to be.

Here are a few pics from the car ride home. They had given her a medical play kit so she could be the Dr. She wore those gloves and hat the whole way home

Up next - her surprise Princess Birthday party that my friends threw for her since she couldn't be eating at the Castle.....

 

[emmysmommy]

As difficult as this entire experience was, and taxing on you and your family, I see so many glimmers of amazingness .... from your husband's company who stepped up and provided transportation, a goody bag and hotel room to the medical staff who treated little Cassidy like she was more than just another little girl. I love that part of the story. But the best news and such a sense of relief was in hearing the diagnosis was NOT cancer!!

I'm looking forward to hearing about her Princess birthday party! She certainly deserved that after all that she'd been through.

I'm so glad to be reading the rest of this with a sense of relief.

 

[pwdebbie]

If I could make a suggestion, with the health of your daughter being what it was, I realize this may not be a priority right now, but I would definitely take the survey (if it's online or on paper), I would let them know exactly how you felt about what happened (or didn't for that matter). When things calm down, I would write a letter to their customer service department. In these times where customer service is more important than ever, they need to know where they did well, and in this case, where they fell short.

Definitely take the survey -- for the sake of those who will come after you. What you say now may result in some other family getting better care and attention in the future.

ETA Just finished reading the rest of the posts. Your dh's company is amazing! Car, hotel, goody bag. And the smiles on your Cassidy's face are priceless, made my eyes water. So glad to see that it was not cancer. And wow, what a great report about the hospital. Thank you for sharing all this with us. You have a fantastic family and I hope that one day in the near future you get a really awesome Disney trip to make up for this one. Praying for complete recovery for Cassidy.

 

[nkereina]

What a story! So glad to read that it was not cancer and she is doing much better.

What line of business is your husband in? I'm so impressed with the way they helped you, even giving you a goody bag. Unheard of nowadays!

 

[wiigirl]

What a story! So glad to read that it was not cancer and she is doing much better.

What line of business is your husband in? I'm so impressed with the way they helped you, even giving you a goody bag. Unheard of nowadays!

 

[DopeyDonald]

As difficult as this entire experience was, and taxing on you and your family, I see so many glimmers of amazingness .... from your husband's company who stepped up and provided transportation, a goody bag and hotel room to the medical staff who treated little Cassidy like she was more than just another little girl. I love that part of the story. But the best news and such a sense of relief was in hearing the diagnosis was NOT cancer!!

I'm looking forward to hearing about her Princess birthday party! She certainly deserved that after all that she'd been through.

I'm so glad to be reading the rest of this with a sense of relief.

It WAS filled with amazingness, so much prayer lifted us up. I am a very very nervous person - lol All of my friends know this - they know I am the one who worries A LOT - about my kids, about health, about money - everything. I felt so calm during all of this - it HAD to be prayer!

 

[emmysmommy]

It WAS filled with amazingness, so much prayer lifted us up. I am a very very nervous person - lol All of my friends know this - they know I am the one who worries A LOT - about my kids, about health, about money - everything. I felt so calm during all of this - it HAD to be prayer!

Amen sister!!

 

[DopeyDonald]

Definitely take the survey -- for the sake of those who will come after you. What you say now may result in some other family getting better care and attention in the future.

ETA Just finished reading the rest of the posts. Your dh's company is amazing! Car, hotel, goody bag. And the smiles on your Cassidy's face are priceless, made my eyes water. So glad to see that it was not cancer. And wow, what a great report about the hospital. Thank you for sharing all this with us. You have a fantastic family and I hope that one day in the near future you get a really awesome Disney trip to make up for this one. Praying for complete recovery for Cassidy.

I think I will do the survey - I found the card with the online address. The more care we received at St. Paul's really made the lack of attention at Florida's stand out.

Oh and I am already trying to finangle a trip with her and I to WDW or DL - my aunt lives in Ontario, CA so her and I may just have to pop out there for a quick visit....

What a story! So glad to read that it was not cancer and she is doing much better.

What line of business is your husband in? I'm so impressed with the way they helped you, even giving you a goody bag. Unheard of nowadays!

Thanks for the well wishes. He is a Territory Sales Manager for a company that services convenience stores. It is a national company that has a branch office in Minneapolis. He's really close with his General Sales Manager and other territory managers. The Division President is fairly new but seems like a great guy. I cannot believe the stuff that was waiting in the car for us...A cooler of pop and bottled water, cheese spread, pretzels, crackers, granola bars, a HUGE container of nuts, coloring/activity books, markers, a stuffed toy and I'm sure I'm forgetting things....

 

[Moira222]

Holy cow! Your title caught my attention and I was just sucked in .... and so glad that as awful as this seemed, it ended up being something that could be managed and was not life threatening. I have tears in my eyes just imagining your relief at being told you could go home for the weekend before surgery, and how thoughtful your DH's company was.

It was nice that your parents could stay with your other two children to finish out their vacation. It clearly distracted them and let you and DH really focus on your little one. sigh. NOT how you planned this vacation for sure!

Welcome home with your baby and hope she is on the speedy road to recovery (and maybe a sneak make up trip?)

I will try to check back soon to see how she is faring & how the rest of the surgery & follow up go.

Your son & dd have such big happy smiles on their faces, esp at the tea. I'm glad you and DH managed to at least have a little bit of one on one time with them before all hades broke loose!

 

[DopeyDonald]

Disney Update: Just wanted to show all the fun my big kids were getting to have while we were flying home and getting MRI's done....

When this trip was in the earliest planning stages, it was decided that the girls and I were going to do a "world tour". We LOVE EPCOT and wanted to experience each of the countries in more depth than we ever have. We planned to have a authentic "snack" in each of the countries and purchase a small trinket from each. Annie and Nana are planning on going to France and visiting Paris when Annie graduates so they were going to get berets and take their pic with Marie and such.

ME - I was going to buy me one of those sombreros and wear it with pride everywhere! - I LOVE LOVE LOVE Donald and Mexico Donald is my favorite. I always take my pic with him and make my kids wait to the side so they don't take away from my picture time... lol My mom didn't really think I would buy one, but I assured her that I most certainly would. And wear it! lol I'm sure she was horrified by the thought.

Any way - that was another thing that never happened obviously, but my mom and Annie did end up getting a reservation in France for Thursday. They ate there at lunch and loved it. Here are a few pics from that...
They also ran into Sleeping Beauty who had no line and was looking for someone to come and visit her...

Fancy French Lunch Pics....

Cute French Waiter...

View from their table

I'm not sure what the boys were doing during this, and my son doesn't remember either -he *thinks* they went on Test Track and SE. LOL

After awhile they met up for Nachos in the rain in Mexico....

AND THEN - they did the sweetest thing for me...they bought me a Sombrero... AND - they wore it all over and took pics AND even more amazing....they brought that sucker home. On the airplane. I am in love with that thing...

Then those party poopers watched Illuminations from the Parking Lot Oh well.....