Brigitte's PTR...Wish Trip. MAW/AKL April 24th-May 5th

[pacrosby]

Just for a heads up - yes they are all listed as being for one visit only. Water Country was on our list in December as well as the NE attractions: StoryLand, Santa's Village, Splashtown USA (Maine) and Six Flags (Agawam) and Roger Williams Park Zoo (Providence). There's a fair amount in the Tri-State area (NJ/NY/PA) so if you were up for a weekend you could combine a couple and only pay for accomadations (that's what we are planning - I'm hoping for a very full spring/summer)

Of course maroo brings up another issue. You could call them upfront and find out rather than just wait and see.


Hey btw: I just noticed our time in WDW this Spring will overlap with yours (we'll be there 4/29 -5/4)!!



Pamela
Matty's Wish Trip PTR http://www.disboards.com/showthread.php?t=2325607
Matty's Wish Trip TR "Mom, Dad, 3 Kids, and a Gingerbread Boy" http://www.disboards.com/showthread.php?t=2356739

 

[pipersmom]

Just checking in this morning, hoping you've heard something back from Miami and that you all enjoyed your volunteering!

 

[pnutallergymom]

I haven't heard anything from Miami all day !! Hoping this morning. I sent an email to the surgeon this morning... Crossing my fingers!!

The volunteering was great last night!!! I was so happy to do it with the kids. They were wonderful ...and I think really learned alot. I didn't tell them that we were getting a ticket to Disney for doing it. I didn't want them to think that they always have to get something in return for helping others, that sometimes it is just nice to do something for someone.

We arrived at about 5:45 and they put us right to work!! It was at a childcare center. We had to wash all the little chairs in the classrooms. Perfect job for the kids!! We were done by 7 and home in time to do meds, hook Brigge up to the pumps for the night, tuck them all in, and mommy got to sit and watch the Grey's/Private Practice crossover!!!! All and all a good night!! Except for the fact that my husband conveniently got called for OT last night and didn't go . Oh well!! I will let you all know how long it takes to receive our vouchers.

 

[pipersmom]

I hope you hear from them today, I know how the waiting is! I'm glad you guys enjoyed your volunteer stint last night, and that you got home for Grey's/PP..I LOVE those shows! Mark & Lexie better get back together or I'm going to be ! I have to say though..Naomi & Sam's daughter getting preg..just a bit too predictable! We'll have to see what happens.

 

[cantwaittoseemickey]

I hope you hear from Miami soon hun((hugs)). The childcare cleaning sounds great. I wasn't able to find anything in our area.

I didnt know about the passports that is cool.

 

[Momofwishkid]

Hoping you hear the news your looking for soon. I hate the waiting game.
Your volunteering sounds wonderful! I wish they had one like that near us.

 

[pnutallergymom]

Thanks everyone for all the good wishes!!

We heard from Miami on Friday morning! I had been going crazy waiting, and then realized that I was being silly, sitting and waiting by the phone!

So, I called Comcast and figured out how to use the call forwarding feature and forwarded the calls to my cell!

I guess they had a HUGE video conference on Wednesday. It included 18 cardiologists, 3 Cardio-Thoracic Surgeons, and a handful of Anesthesiologists. I was impressed!! It has often taken me weeks, sometimes months to get a care conference for Brigge in Boston!! The conclusion is that they wouldn't do anything different than our team in Boston. I was very happy to hear this!! I think my biggest fear was, what if they come back with a totally different course of treatment, then what would we do??

So, we are moving forward with our original plans. Brigitte has pre-op on Wednesday and then the Cardiac Cath is on Thursday. Keeping our fingers crossed that everything goes well. She is such a RockStar , that I don't expect any issues!! If they just go in and take some measurements etc., we should be home on Thursday night...if they decide that they might dilate some of her arteries or even attempt to close the ASD, then we will likely stay overnight. They have a bed booked for her already.

Moving on to more important things , would those of you who have emailed Sea World with your special requests, mind sharing the email address you used?? TIA!!!

 

[Momofwishkid]

Im so glad they got back to you and you git the news you were hoping for. Im sure that makes it easier to go ahead with the plans. I'll be keeping Bridgette in my thoughts.
As for SW we called but I have the e-mail of the woman who wrote us with the confirmation. Im assuming she is the the person who handles these things. I'll look it up and PM you.

 

[kellyw8863]

Thanks everyone for all the good wishes!!

We heard from Miami on Friday morning! I had been going crazy waiting, and then realized that I was being silly, sitting and waiting by the phone!

So, I called Comcast and figured out how to use the call forwarding feature and forwarded the calls to my cell!

I guess they had a HUGE video conference on Wednesday. It included 18 cardiologists, 3 Cardio-Thoracic Surgeons, and a handful of Anesthesiologists. I was impressed!! It has often taken me weeks, sometimes months to get a care conference for Brigge in Boston!! The conclusion is that they wouldn't do anything different than our team in Boston. I was very happy to hear this!! I think my biggest fear was, what if they come back with a totally different course of treatment, then what would we do??

So, we are moving forward with our original plans. Brigitte has pre-op on Wednesday and then the Cardiac Cath is on Thursday. Keeping our fingers crossed that everything goes well. She is such a RockStar , that I don't expect any issues!! If they just go in and take some measurements etc., we should be home on Thursday night...if they decide that they might dilate some of her arteries or even attempt to close the ASD, then we will likely stay overnight. They have a bed booked for her already.

Moving on to more important things , would those of you who have emailed Sea World with your special requests, mind sharing the email address you used?? TIA!!!

I'm glad that you finally heard from Miami and that their recommendations mirror those of Boston's. It certainly makes it easier to move forward with difficult decisions when their seems to be a consensus that it's the right thing to do. We felt similarly when we scheduled Ali's airway reconstruction. Boston said it needed to be done, that we didn't have a choice, but we ended up going to MEEI. The surgeon there said not only did we not have a choice, but that it needed to be done NOW. It stunk, but it was certainly a relief to know that we were making the best decisions for her.

I know nothing about Sea World, and to be honest, I'm not even sure that we are going to go if we have to pay OOP for Gabe. It just doesn't seem like it would be worth the ticket price for him to go and feed the dolphins. But I'm interested to see what kind of plans you have up your sleeve. Maybe I'll change my mind!

Oh, and I love the whole TGM thing. I'm having a blast over there!

 

[maroo]

Thanks Maroo!!

AKL was our request, but I also was told that it was full that week, so it worked out well for us!! Who knows, though!!

So tell me more about the "checkout" procedure at GKTW...were you guys supposed to have done that even though you were staying at the CR??

Thanks!!

Hi there!

I have been away from the DIS for a few days and just saw this question.

Yes, we were supposed to check out on the last day with GKTW.

But they didn't have a car on the last day...I had to drive Lauren's wheelchair back to MS - so they had no car. They had to ride Magical Express to the airport - so there was no way to get to GKTW. But, yes, we were supposed to check out at GKTW.

Since we couldn't...they just mailed us all of her checkout stuff and it included the Passport info.

So if they do it the same way, then you should get a Passport.

 

[pnutallergymom]

 

[pnutallergymom]

Sorry they were so big!! I have to figure out a way to resize them!!! But, on the bright side, you got an up close and personal look at the kids!!!!

 

[Momofwishkid]

Love the pics. Your so lucky you have snow! We havent gotten anything this year. Looks like the kids love playing in it.
By the way, I forgot that info for you. Sorry. Will get on that right now.

 

[pnutallergymom]

Thanks so much Jennifer!!! Got it!! Glad you enjoyed the pictures!! Luckily, we have had a pretty mild winter so far. The snow looks so beautiful when it has freshly fallen!!

So, wanted to let you all know that we already got our vouchers for the Give a Day, Get a Day promotion!! We did our volunteer work on Thursday and I got the email today!! Just need to print them off and we are good to go!!!

 

[pnutallergymom]

So I am writing to you live from the blue recliner at Boston Childrens . Have a great view of the city tonight...

Brigitte spiked a fever today up to 101...so here we sit waiting for blood cultures and running a viral panel.

She is tachy, feverish, and just plain miserable . We spent 4hrs in the ED watching Disney Parades...waiting for a bed. We are finally settled on what was our home for the first two and a half years....the cardiac floor.

I am SOOOOOO sick of this!!! The kids at home are hysterical. They don't do well when unplanned admissions happen. They boys do ok in there own quiet way, but Brenna just cries and cries...she misses her baby sister and her mom.

At least I have a few days to get the rest of my ADR's in order. Thinking about checking out the DISigner board to make some family T-shirts.. Got nothing but time now!!

I can't wait to get to DISNEY!!!!

 

[Momofwishkid]

Im so sorry Bridgette isnt doing well and I'll be keeping her in my thoughts for a quick recovery and also the kids at home. I know how difficult it can be on them.
Good luck with the ADR's. You should be far enough out to get everything you want. Keep us updated.

 

[Thumper321]

I had lost your PTR thread until you posted on Amanda/Piper's PTR! I'm so sorry to hear about being in the hospital. It seems that Club Med is popular this week. In fact, I'm not completely sure that we'll avoid an admission with Aidan this week. His SPO2 is down, but that's a different story. I am glad to hear that things are moving forward as far as Disney goes. I'm subbing so I'll be able to stay updated a little better. Hugs, thoughts, and prayers for you, Brigitte, and the rest of the family! How long do you think they'll keep her? If it's going to be a while, I could send cards to Brigitte and siblings as well if it would help. It's hard on everybody when one is in the hospital.

 

[kellyw8863]

I'm sorry that you guys are inpatient. Does the cardiac floor have private rooms? I think that's one of the biggest downsides of being picked up by CCS - most of their rooms are not private, and I hate sharing.

At any rate, I hope that cultures come back normal and that you guys are out of there soon.

 

[pnutallergymom]

Thanks you guys!!

I hope Aidan can manage to stay home!!! THinking of you guys!!!

Kelly, 8east does have privates. We are in one because she is on Enhanced precautions...Lucky her!! Thankfully, she isn't in much of a playing mood so she isn't fussing to much about not going out and walking to the playroom. We have brought the toys to her, but she just wants to watch Mickey and Minnie. The sharing of rooms is one of the things I can't stand about CCS, amongst others!! So glad we don't deal with them that much. Luckily we have a great GI doc who really manages most of her care and we go to 9south and those are all privates. They are a little worried about her cardiac status thats why we came to 8E. This was our home for the first 2.5yrs of life, so everyone knows us!!!

She tested positive for RSV today. So we can at least stop the vanco and meropenem. They are still hopeful that the cath can happen tomorrow morning. As long as she has a decent night, and doesn't spike a temp, she will go to the cath lab in the AM. They are going to keep her tomorrow night too.

 

[kellyw8863]

Ugh, that stinks about enhanced precautions, but at least you are in a private room. We've had pretty good experiences on the CCS floor (our worst has been general pediatrics), though the last time she was admitted, she was having a Go-Lytely clean-out and the charge nurse decided at 5:30 in the morning to move us to another room to a bed away from the bathroom to free up a "big kid bed" for an admit. I pretty much pitched a fit that they were going to move Ali, who was newly potty trained, to a bed away from the bathroom, and then expect her to make it there in time with her limited mobility, hooked up to pumps and IVs, and not poop in her pants. The charge nurse's response? We'll put her in a diaper. Because apparently the dignity of a four year old doesn't count. I told her to forget a diaper and get a mop instead because that was going to be her job for the next 36 hours. It's amazing how quickly after that they were able to find another big kid bed. But that's really the only sketchy experience we've had with CCS. Most of Ali's stuff is GI related as well, but unfortunately, her issues are always multi-systemic which rules out the GI floor for her. We used to end up either there or the neuro floor.

I hope that Brigitte's feeling better soon and that everything goes well with the cath tomorrow morning.