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

[pnutallergymom]

Christine, we haven't actually "met" before...but we did talk on the phone a loooong time ago....before Brigitte got her fundo!! It was like 3 yrs ago. I think I have seen you walking in the halls before too. I am pretty good friends with Jessica and Eithene. You would probably know who Brigitte is if you saw her....red, curly hair...very tiny!!! And yes, it is Dr. Flores that we see every year, just for a quick check! Dr. K consults w/him alot about Brigitte.

Things didn't go great at all today, actually. She has a suture abscess on her line site...so that needs to be addressed. Worse though, she has lost 1.2 kilos in 12 days. I was in shock. We ran a bunch of labs, all of which look good, but Dr. K ordered a Chest X-ray and it showed a significant prominence in her pulmonary vasculature. Her echo a month ago during her line infection also showed that her pulmonary regurgitation had increased from moderate to severe. She is going to end up needing a valve replacement, something we were really trying to hold out on for as long as possible. It is just affecting so many of her other systems now, that the writing is on the wall. We are going to increase her PN to 4nights a week now too in the hopes it will give her a bit of a boost. So, I guess we'll see.

 

[pipersmom]

I'm so sorry things didn't go better for you today, Shannon. I always worry about line infection with Piper's port, but knock wood we haven't had one yet. Hoping the PN will help, and keeping you in our thoughts and prayers.

 

[yinyanggirls]

Can I ask what TGM touring plans?

I'm guessing she's talking about Tour Guide Mike. He has a link here off of the DIS. The Unofficial Guide to WDW also has a website (touringplans.com) that offers plans as well.

 

[dmbfan]

Christine, we haven't actually "met" before...but we did talk on the phone a loooong time ago....before Brigitte got her fundo!! It was like 3 yrs ago. I think I have seen you walking in the halls before too. I am pretty good friends with Jessica and Eithene. You would probably know who Brigitte is if you saw her....red, curly hair...very tiny!!! And yes, it is Dr. Flores that we see every year, just for a quick check! Dr. K consults w/him alot about Brigitte.

Things didn't go great at all today, actually. She has a suture abscess on her line site...so that needs to be addressed. Worse though, she has lost 1.2 kilos in 12 days. I was in shock. We ran a bunch of labs, all of which look good, but Dr. K ordered a Chest X-ray and it showed a significant prominence in her pulmonary vasculature. Her echo a month ago during her line infection also showed that her pulmonary regurgitation had increased from moderate to severe. She is going to end up needing a valve replacement, something we were really trying to hold out on for as long as possible. It is just affecting so many of her other systems now, that the writing is on the wall. We are going to increase her PN to 4nights a week now too in the hopes it will give her a bit of a boost. So, I guess we'll see.

Wow, I feel awful cause I do not remember... I am sorry. I am SOO glad you see Dr Flores, has he tried the long J tube on her yet? This is what helped get Jake off TPN ( and my putting my foot down on it)?

I am sorry they have to increase her TPN...I will say it took Jake almost 5 months of being on 7 days of TPN for 12 hours to some weight gain. He really started to gain nicely before we took him off it, but with a couple of line infections, and blood transfusions, and the GI's there not wanting to do anything to "try" to get see what we can do to get him off TPN, the weight became a non issue. We did see an increase of the infections and lab issues once we started going from 12 hours to 16 hours and increasing calories.

Not sure what will happen when we go back for our next appt, cause he is below the weight line that Dr B wanted him to be at, and since we know pushing the J feeds did not work so well, plus he also did not gain, but contiune to lose, we may have to go back to TPN, but it would only be a couple days a week since he is starting to eat food by mouth, and I do not want him to loose that again. But we will see. We gave it a good almost 7 months...and who knows, maybe dr Flores will have another plan for us.

If Dr F has not mentioned the long J tube I would go back and talk with him. He has so many good ideas than Dr N had...which was nothing...for us.

 

[cantwaittoseemickey]

Dropping by to say hello So sorry to hear the apt didnt go well. Hugs!

Sounds like you have a very exciting trip planned!

 

[pnutallergymom]

Thanks you guys. We'll figure it out somehow!! I think the one thing that drives me crazy is that when you know something is wrong with your child and the doctors do to, that it takes FOREVER to make plans to "get a plan in place"...and even then, those plans are rarely acted on the way that you are promised they will!! So frustrating!!

Anyways, I am trying to keep myself busy with reading all the TR and researching and researching all things DISNEY!!!!!

Nothing like a little Disney Magic to put you in a good mood!!!

 

[dmbfan]

I would at least ask Dr Flores about the long J tube since you already have him as a dr, it is worth a shot and better than full time TPN. Good Luck

 

[pnutallergymom]

I can't even believe it!! She is down again today to 11.1k from 11.3 on Wednesday!! She looks awful. Her eyes are so sunken in, they look black and blue. Her cardiologist called today and is slightly concerned with the changes in her chest x-ray...but more concerned about her increase in respirations. He did mention it may be time for another open heart surgery...specifically placing a conduit in ther right ventricular pathway to the pulmonary artery.

I know in my heart that this is probably what she needs, but just can't stand to think of more and more surgeries and nights in the hospital.

I spoke to our wish coordinator today, so that was a ray of sunshine!!! She was going to book our rental car today!! I am so glad that Brigitte has this wish to look forward too!!!

Hope all of you are doing well!!

 

[yinyanggirls]

I can't even believe it!! She is down again today to 11.1k from 11.3 on Wednesday!! She looks awful. Her eyes are so sunken in, they look black and blue. Her cardiologist called today and is slightly concerned with the changes in her chest x-ray...but more concerned about her increase in respirations. He did mention it may be time for another open heart surgery...specifically placing a conduit in ther right ventricular pathway to the pulmonary artery.

I know in my heart that this is probably what she needs, but just can't stand to think of more and more surgeries and nights in the hospital.

I spoke to our wish coordinator today, so that was a ray of sunshine!!! She was going to book our rental car today!! I am so glad that Brigitte has this wish to look forward too!!!

Hope all of you are doing well!!

I'm so sorry for the medical worries today. It is hard to make those tough choices for our kids.
Glad your trip is moving along. It is nice to have fun things to "worry about" as well.

 

[StefaniLyn]

I can't even believe it!! She is down again today to 11.1k from 11.3 on Wednesday!! She looks awful. Her eyes are so sunken in, they look black and blue. Her cardiologist called today and is slightly concerned with the changes in her chest x-ray...but more concerned about her increase in respirations. He did mention it may be time for another open heart surgery...specifically placing a conduit in ther right ventricular pathway to the pulmonary artery.

I know in my heart that this is probably what she needs, but just can't stand to think of more and more surgeries and nights in the hospital.

I spoke to our wish coordinator today, so that was a ray of sunshine!!! She was going to book our rental car today!! I am so glad that Brigitte has this wish to look forward too!!!

Hope all of you are doing well!!

Sorry to hear about the new medical news. Is there any chance the could do the surgery with a catheter?

I will keep you both in my prayers.

 

[pipersmom]

I can't even believe it!! She is down again today to 11.1k from 11.3 on Wednesday!! She looks awful. Her eyes are so sunken in, they look black and blue. Her cardiologist called today and is slightly concerned with the changes in her chest x-ray...but more concerned about her increase in respirations. He did mention it may be time for another open heart surgery...specifically placing a conduit in ther right ventricular pathway to the pulmonary artery.

I know in my heart that this is probably what she needs, but just can't stand to think of more and more surgeries and nights in the hospital.

I spoke to our wish coordinator today, so that was a ray of sunshine!!! She was going to book our rental car today!! I am so glad that Brigitte has this wish to look forward too!!!

Hope all of you are doing well!!

I'm so sorry you're having to deal with that right now hon. I am glad you got to speak with your wish coordinator today though, and that you guys have things to plan for that don't involve Drs and hospitals!

 

[SueM in MN]

Can I ask what TGM touring plans?

Tour Guide Mike - one of the sponsors of the Theme Park Board. He was a WDW VIP Tour Guide, started his own private guide business and a tour planning service.

 

[Momofwishkid]

Im so sorry you have this news to deal with. I know how hard it is when your facing surgeries.
Im so glad you got to talk to your WG and have some good news to think about.

 

[kellyw8863]

I'm sorry to read this update. Who do you guys see in cardiology? Have they done an echo recently to see how things look?

 

[cantwaittoseemickey]

I can't even believe it!! She is down again today to 11.1k from 11.3 on Wednesday!! She looks awful. Her eyes are so sunken in, they look black and blue. Her cardiologist called today and is slightly concerned with the changes in her chest x-ray...but more concerned about her increase in respirations. He did mention it may be time for another open heart surgery...specifically placing a conduit in ther right ventricular pathway to the pulmonary artery.

I know in my heart that this is probably what she needs, but just can't stand to think of more and more surgeries and nights in the hospital.

I spoke to our wish coordinator today, so that was a ray of sunshine!!! She was going to book our rental car today!! I am so glad that Brigitte has this wish to look forward too!!!

Hope all of you are doing well!!

Im so sorry sweetie. Big (((HUGS)))

 

[pnutallergymom]

I'm sorry to read this update. Who do you guys see in cardiology? Have they done an echo recently to see how things look?

Kelly, we see Dr. Fulton. He is a wonderful man, just very conservative. I know that is good most of the time...but not when your kid is fading away in front of you day by day. She did have an echo in November when we were in for the line infection. Her pulmonary regurgitation has gone from moderate to severe just since April. She also has some left to right shunting due to her ASD....that has yet to close. So its time, I just dread the thought of it.


Thanks all of you for your very kind words. Brigitte is down to 11.0k. I can't believe she is still losing. We have the cardiology appt. tomorrow. Hopefully we will get some answers...if not I have a secondary plan in place that may be bringing us to Florida sooner rather than later. I am setting up a 2nd opinion at Miami Children's Hospital, with a very prominent surgeon who left Boston to become the director in Miami. We have been in touch by email a few times this week and he is very interested in Brigitte's case. He is optimistic he can help.

So, tonight I bounce back and forth between setting up ADR's and researching cardiac options!!

Hope you all are doing well!! I am enjoying following all of the other Wish Trips that are in the planning phase as well!!!

 

[pipersmom]

Keeping you guys in my thoughts and hoping you get some positive forward progress tomorrow, Shannon. I know how frustrating it can be to not have answers. Good for you on being proactive and having a back-up plan..I hate that so many parents view a Dr as a god and let them have total control of their child's health.

 

[kellyw8863]

I think cardiology there in general is very conservative. I remember when Maya was a year old, we had her evaluated for severe FTT by both GI and cardiology, as heart defects run in DH's family. At a year, her ASD was 10mm and his assumption was that it was even bigger a year prior when she was first dx'd at another hospital. Despite the fact that Maya had fallen way off the charts, he still took a wait and see approach even though GI was insistent that the problem was cardio related. In the end, it ended up being a good choice and it was closed by the time she was 4, but I know what you mean about their conservativeness. Have you heard anything from Miami? Any more trip planning?

 

[pnutallergymom]

So Brigge's cardiologist emailed yesterday to tell us they can't get her an MRI until February 16th......given the state that she is in, it is concensus that this is just to long to wait. We are going to move forward with the cath first.

In Disney Wish planning news, I have gone ahead and made some ADR'sand a preliminary itinerary for the wish portion of our trip!!!

Our flights are great, leaving Manchester on April 24th at 10:40 with arrival in Orlando at @1:40pm. We will pick up the rental car and hit WalMart to pick up snacks, juice boxes and most definitely some adult beverages as well!!

We will probably head over to AKL, check in and unpack and maybe hit the pool for a little while and grab a quick bite to eat. We are planning on doing dinner at GKTW and Mayor Claytons Bday party...we have orientation at 7:45.

On Sunday April 25th I have ADR's at Donalds Tusker House for breakfast at 8:10...then we are going to AK for the morning and try to be back to the lodge by 1pm for a nap/pool...then we will do DHS for the evening.

On Monday I think we will try to do US/IOA for the day...I have ADR's at Chef Mickeys for 7:05, but will probably cancel that and either do the Hard Rock or Margaritaville for dinner. I know that the HR gives a discount for Wish Families, is it just on merchandise or is it food/beverages as well??

On Tuesday We will head to MK for Rope Drop!!! We will probably stay here until early afternoon as well, and then head back to recharge for a bit....we have ADR's for Ohana (my favorite)at 6:25..then will head back into the park for Spectro and Wishes.

On Wednesday I am thinking this may just be a down day for us....not sure though. Thinking we will sleep in, do the pool for a while and then maybe go back to US/IOA for the rest of the night.

Thursday we will do breakfast at Boma and then maybe do Epcot for the day. We are planning to head over to GKTW for dinner and the Christmas Party.

After writing this down and looking at again, I may switch some of this around!! It is looking way to commando for me...I know we will have the extended part of our vacation to relax. I wish there wasn't so much to cram in during the wish part!!! Isn't that just a terrible dilemma to have!!!

Ok...looks like I have ALOT of tweaking to do!!!

 

[pipersmom]

Woohoo for ADRs..Boma and Ohanas both sound so good to me! I'll be anxious to see what you thought! Your plans looked good to me, but you saw how much I have crammed into mine, lol. I thought yours looked pretty laid back Awesome that you're going to take advantage of the things at GKTW.

I'm sorry you're going to have to go with the cath..every time Piper is put under it just bites, she does not come out of anesthesia well at all, and the respiratory risks involved..ugh. Keeping Brigitte and your family in my thoughts, hon