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

Discussion in 'Pre-Trip Reports and Plans' started by pnutallergymom, Dec 27, 2009.

  1. pnutallergymom

    pnutallergymom Mouseketeer

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    Welcome to our Pre-Trip Report. I apologize in advance for the length of this history. Its hard to summarize all that Brigitte has been through.:)

    Our lives would be forever changed on August 18, 2006 by the addition of our fourth childprincess:. There had been many indications early on in the pregnancy that our little girl would be born with major health issues. We just never had any idea how severe they would be.

    Finally at 36 weeks the decision was made to induce labor. 14 hours later, Brigitte was born. We knew she wouldn’t be breathing as she had bilateral pleural effusions and she was immediately transferred to the NICU where she would spend the next 11 days. During these days she was intubated and on life support for the first 4 days of life. She was diagnosed with multiple cardiac anomalies and genetics was called in for a consult due to her dysmorphic facial appearance. She was given a clinical diagnosis of Noonan Syndrome by one of the leading NS cardiovascular geneticists in the country at Children’s Hospital Boston.

    To date, Brigitte has spent over 240 nights at CHB. She has had 15 major surgeries and over 40 procedures requiring general anesthesia. What we initially thought was a complex heart defect would soon turn into much more. Open heart surgery, being the easiest thing we have faced so far. Who would have thought? She has diagnosis that include Noonan Syndrome, Mild CP, dysautonomia, failure to thrive, low tone, reflux, constipation, global developmental delay, pulmonary stenosis, hypertrophic cardiomyopathy, ASD, intestinal malrotation, laryngeal cleft, strabismus, ptosis, growth hormone deficiency, common variable immunodeficiency, medically induced PTSD, chronic aspiration, asthma, and more I am forgetting. We currently see specialists in the following fields: Cardiology, Genetics, GI, Pulmonary, Gen. Surg, Endocrine, Immunology, Psych, Ophthalmology, Complex Care, Otolaryngology, Orthopedics, Neurology, and Infectious Disease. Her current accessories now include a gtube, a broviac central line, and SMO's. Her current medications are Neurontin, Clonidine, Trazodone, Prevacid, Miralax, Senna, Melatonin, Atropine drops, Flovent, Albuterol, Periactin, Tev-Tropin, and IVIG...we are starting ethanol locks this week as well on her line.

    In the last 10 weeks, Brigitte has been hospitalized 3 times and has had a surgery each of those stays. After a marathon run of 18 mo of not gaining an ounce of weight despite having her first 30 day run without an antibiotic and being relatively healthy, the decision was made to start her on TPN. The changes we saw in her in the first 6 weeks were incredible! She started talking, took her first steps and gained almost 4lbs. Then the irritability started and so did the low grade fevers. She had a line infection just 6 weeks after having it placed. We immediately started treatment with Vanco, but then the cultures started to grow out a second bug. She was now growing two different bugs, which later were identified by the CDC in Atlanta as a strain of staph only found in dirt. No idea where this came from, but she was getting worse as the hours went on, so the line came out. We believe that had that line stayed in another 12 hours, she would have been in the PICU. We made the right decision, but Brigitte’s body didn’t agree. So 3 weeks ago, she went back in to have another Broviac placed.

    The hospital stays have gotten harder and harder as Brigitte gets older and understands so much more. For the last year, she cries when we pull into the parking garage. It is near impossible to take her temperature, let alone examine her. During one of the recent hospitalizations her team ordered a psych consult where she was diagnosed with PTSD. She is now taking 2 different anxiety meds, and another sleep med just to get through the night.
    Despite all she has been through, she is such a happy little girl when she is well. She has made amazing strides in the last few months. TPN has definitely been a miracle for her. She attends a special needs inclusion pre-school 3 days a week. She receives PT, OT and Speech at school, as well as privately at home. We are very optimistic that things will get better as long as we can give her the adequate nutrition she needs. She is very different from most kids with NS. The theory is that she is hyper metabolic and just requires so many more calories than normal…..and more than we can give her. Having an ongoing heart issue isn’t helping matters either!!

    So, as I am sure most of you who have “sick kids” can relate, Brigitte sure could use a break! A week of fun!! No doctors, No appointments!! We are super excited and are counting down the days!!

    In case you didn’t catch it in the beginning, Brigitte is our 4th child. Brenna is 8. Jake is 7. Sean is 6. The kids have been through so much. It isn’t easy on them either. Not only are they constantly worried they will never see their sister each time she goes to the hospital, they lose mom for a bit too. My husband, Bryan, and I are very lucky to have a wonderful support system. Our parents jump right in and take care of picking up the slack when Brigge is in the hospital. It has made it a bit easier, but nobody can take the place of mom and dad, especially when you are scared. They are growing up to be amazing, compassionate children. I am so very blessed to have them, as is their baby sister. They deserve this trip as much as their sister does. We are so grateful to have been given this opportunity from MAW. What an amazing organization.

    As it stands now, our adventure will begin on April 24th- April 30th. We are extending it to May 5th!!! I don’t want to feel rushed at all. If the kids want to spend all day at the pool, then that is fine with us. My goal is to come home relaxed and feel like we are very lucky to be able to extend the time so we can really slow down and enjoy!!

    We are staying at Animal Kingdom Lodge and haven’t decided where we will spend the last 5 days. We have an opportunity to stay at the Swan on a really good discount, but haven’t made up our minds yet.
     
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  3. maroo

    maroo DIS Veteran

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    HI there!

    Oh my goodness! Those line infections are crazy bad!

    I can't keep everyone straight... Are you guys staying at AKL because GKTW is full that week? We had to stay at The Contemporary because GKTW was full - we still had a great time (but we had much older kids on the trip)!

    At least with the long stay, you guys will have time to go to GKTW a lot and attend the parties, etc, even if you don't sleep there!

    And you will get to do your star! So that is awesome! Your kids are going to love the place!

    And of course Disney! :rotfl:
     
  4. pnutallergymom

    pnutallergymom Mouseketeer

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    Hi Maroo,

    Brigitte's actual wish was for Disney...but more specifically, she wanted to Open Magic Kingdom with all the characters at the morning opening ceremonies. Our local MAW is working on it, but are pretty sure it won't be able to happen:sad1:. So since she is soooooo into Mickey and Minnie, we decided it would be best to stay onsite. Originally, we weren't going to have a rental car, but after meeting with our wonderful wish granters last week, that has changed. So we will be able to attend a few of the events at GKTW:). We are planning on doing Mayor Claytons Bday party the day we get in and definitely Christmas on the Thursday night as well. We had no intentions on utilizing the passes to US/IOA, but since we have the rental, we will now incorporate those into our plans as well.

    We are actually thrilled to be staying at AKL. I think it is going to be an experience in itself!!:cool1: We are very fortunate to be able to extend the vacation so that we can have alot of down time!! Our plans are to do some pool days, some rope drops (but those will mean early nights too) and also some late mornings so that we can stay out late some nights too!!

    I have already made some ADR's. I'm thrilled to say we have reservations for Chef Mickey's, Ohana, Cape May, and Le Cellier!! I have been a loooooong time lurker on the Dis but am excited to be planning this trip. One thing I am struggling with is trying to let go and let some magic happen!! Thank you for your dedication to all the families on Wish Trips. You are truly amazing!!
     
  5. Momofwishkid

    Momofwishkid DIS Veteran

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    Hi Shannon, Im so glad you started a PTR. It sounds like Bridgette and the whole family are in need of a nice restful vacation. Im so happy she was able to get her wish and Yes I thik AKL will be awesome. Cant wait to follow along with you.
     
  6. maroo

    maroo DIS Veteran

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    I am so glad to hear that you guys have decided to get the rental car! That will be alot easier than taking a cab and then not being able to go back and forth!

    :goodvibes
     
  7. AlternateEgo

    AlternateEgo Missing the House of the Mouse

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    Oh your plans sounds wonderful! :wizard:
     
  8. dmbfan

    dmbfan DIS Veteran

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    Wow that is awesome that you get stay at AKL and still be able to go to GKTW...:cool1::cool1::cool1::cool1::cool1::cool1:I did not know you could both as a wish trip...that is like a wish trip and half...:thumbsup2

    Than I guess you will not be missing to much by not staying at GKTW...:banana:However the drive from Disney itself to GKTW can take about anywhere from 20-30 mins...but if you have alot of down time, than it should work out good for all.

    Can't wait to follow your PT...:wizard:
     
  9. pnutallergymom

    pnutallergymom Mouseketeer

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    So, I am excited to share that I booked our extra days at the Swan today!! I am going to have to re-do my itinerary now!! Isn't that just terrible:thumbsup2!

    For those of you who have gone on your wish trips already, do you know if the passes to the parks have to be used during the 7 days of the wish trip? I thought I was told by our wish granters that they needed to be used within a year? Just wanted to clarify that.

    Thanks!!
     
  10. kellyw8863

    kellyw8863 DIS Veteran

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    I don't think they need to be used during the seven days. I want to say that I have read TRs where people have extended their trips so that they did not have to use all the passes in such a short period of time, but I'm sure there are people out there who know more about this than I do.

    I'm so interested to read how your trip planning goes with AKL. We're hoping to extend our trip by a day or two and pay OOP to stay there. I so wish that DH and I could get the time off of work to extend even longer, which we could if we went in the summer, but Ali would not be able to tolerate the heat. Oh well!
     
  11. dmbfan

    dmbfan DIS Veteran

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    We were given 3 day hopper passes, 2 US/IA and one Seaworld. Plus the GKTW button has your child's name and dates for your trip. Plus the GAC pass also has your last day of your wish trip on it. This might be something you need to talk to GKTW about ( as they are the ones that hand out your packet) but since your not stay at GKTW, not sure how that works.

    But I am guessing you will have to pay of pocket for any extra days at the park.
     
  12. maroo

    maroo DIS Veteran

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    The passes to the parks expire 14 days after the first use.

    But they are "complimentary" passes...so they can not be upgraded for any additional days. Of course, this gets messed up since those first few days of the ticket are the most expensive. So if you have to buy one day...it is going to cost a bundle, unfortuntately.

    Your GKTW button and GKTW issued GAC will have your specific wish trip dates on them. I am sure that your button would continue to be recognized...but not sure about the GAC. Most attractions will accept that button like a golden ticket...but some will ask for the GAC - depends on the CM. They "may" not see that it is expired...but I would not chance it.

    I would go to Guest Relations on the first day of the OOP part and let them know...especially since it is more than a couple of days of an extension AND it goes into a new month. I would think that would be more noticable to the CM's. Take the GAC you already have and explain the situation and hopefully they will issue you another GAC with the green light.
     
  13. maroo

    maroo DIS Veteran

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    This works a lot like it does for a reg wish trip - they actually already have the GAC stamped before you even get there and it is in your orientation packet. It will say that it was issued at GKTW, even if you are staying at a Disney Resort - so when you are in the parks, the CM's really won't know the difference. This works really well for the families staying onsite because they have a "I have to go NOW" wish trip and GKTW is full, so I guess that is why they handle it that way - which is good for you guys!
     
  14. pnutallergymom

    pnutallergymom Mouseketeer

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    Thanks you guys. I just wanted to be sure we weren't going to be rushed into using those passes in the first 7 days. I know that I have to pay for more out of pocket if I need them...luckily we have a friend who might be able to get us some more for free, but if not and we need them, we'll just purchase them at the park.

    I'm not worried about the GAC either. Anybody with a disability can get one at guest services. We have had one the last two trips to the parks and at US/IOA....and granted we didn't just walk right onto rides, but we were treated really well. Brigitte will be just fine as we typically just have her sit in her wheelchair when we are in lines since she can't stand for long periods of time. I have used TGM in the past and have NEVER waited in a line for more than 10-15min at a time anyways. Despite having the "golden ticket" or GKTW button, I plan on following most of TGM touring plans as I find they are a great resource to use to tour the parks!! I highly recommend them!! That and a few of the touring books are fabulous resources!!
     
  15. yinyanggirls

    yinyanggirls DIS Veteran

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    Sounds like you know what you're doing! Our last day at GKTW is the 24th, but we are then leaving WDW area. Depending on flight times we may go back one last time before we fly out on the 30th. We'll see.:rolleyes1
     
  16. dmbfan

    dmbfan DIS Veteran

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    Can I ask what TGM touring plans?
     
  17. pnutallergymom

    pnutallergymom Mouseketeer

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    The TourGuideMike plans are great:)!! I have used all of them, but especially the one for MK. They are based on visiting the parks on Green (awesome touring) Yellow (be careful, could be a bit crowded) and Red (stay far, far away)!!

    There are certain ways to "tour" the park. TGM is a private tourguide that you can hire to take you around the park......$$$$$$ But, you can subscribe to the site and build your own touring plans for I think 24.95.

    Basically, it tells you to get to Rope Drop first...hit the rides in a certain order, sometimes securing FastPasses, sometimes not.....heading back to the resort for a "break" and then coming back and touring the park again in a specific order.

    I was very skeptical at first, but the first time we used the touring guides, it was a fabulous vacation. I can honestly tell you, we never waited more than 10-15min for a ride, if at all. They are very similar to the Unofficial/Official Guide to Disney. Those are both VERY good as well. I just like TGM site a bit better...just a little easier to navigate!! I knew how much it worked for us, when friends of Bryan's went the same week and told us that their vacation was awful...they waited for hours in lines, the kids were hot and miserable...they couldn't wait to go home!!! I was like "we're we in the same place? Ours was GREAT"!!:confused3

    As you know, Christine, sitting at CHB waiting for the docs to do rounds leaves you with LOTS of time on your hands. I managed to get hooked on Disney while trying to figure out how to make some of the "bad stuff" disappear for the kids. So thats how I planned our first vacation. I followed this board, and TGM and we had an AMAZING trip the first time. The second time, not so much. I didn't plan....didn't have the touring plans, figured I could wing it..........it wasn't what we were used to at all, and we came back VERY disappointed.

    You should look into it for your next trip. It really does make a difference.
     
  18. dmbfan

    dmbfan DIS Veteran

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    Do you go to Boston Children's too?

    Thanks I will look into that site for sure...Thanks..:thumbsup2
     
  19. pnutallergymom

    pnutallergymom Mouseketeer

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    Yes, we do!! 9south is our new home too. We used to go to 8south (CICU) and 8east, but since we are focusing on just GI stuff at the moment that is where we go.

    Dr. Kamin is Brigitte's GI doc....love him!! We have seen Dr. B a few times too. He's a great guy! Dr. Nurko is the one who has had to place her GJ and has done all of her botox. We are actually headed in there today. I have to see Denise and Nicole about Brigitte's site (not looking so great) plus she is starting the ethanol locks, so we have to do a trial in clinic today. Dr. K called and wants to talk about increasing her PN as well. Right now we use it as supplementation 3x a week and then run D5 1/2 the other 4 days, but she isn't gaining any weight, so I think he wants to go up another day a week:sad2:

    Its funny, we actually see your other friend over at Floating once a year just for a "make sure CHB is doing what they should" appointment.!!
     
  20. dmbfan

    dmbfan DIS Veteran

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    Have we meet before? How did you know we were on 9South too? If we have meet and I do not remember, I am so sorry...:guilty:

    I know Dr K, we had him when he was still a resident..:rotfl: Ever since I pushed Jake to get off TPN, he has been hospital free...TPN was just causing to many problems. The only negative thing is Jake has lost about a totally of 10lbs since coming off the TPN, he now weights in at a lovely 46lbs at 9 years old...but his current GI seems to be ok with it.

    Who is our friends over at Floating? You talking about Dr Flores? He is just wonderful and so greatful he has been other things to try, cause Children's had no other solutions except keep him on TPN...and we refuse to let that happen.

    We did the locks with Jake for a while and it made a huge help. We do not do them anymore, cause we are just using his line for IV fluids and IV meds. Being on TPN, the locks are great. Good Luck today.
     
  21. kellyw8863

    kellyw8863 DIS Veteran

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    I hope everything went well today!
     

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