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

Does Bridgett have any of those online e-card sites we can use to send cards? You may not want to give out enough info to send her one anyway (which I can totally understand) - but I would love to send her one if you would like! :) Brighten her day some! :)

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.

Wow! GO MOM!!!

:woohoo:
 
Thanks Maroo!! I don't think CHB does have one of those, but you can send messages to her from the www.childrenshospital.org site. There is a link on the home page to send an email to her!! She loves "mail"!! You are all so sweet.

Kelly, I have an ongoing "hate" relationship with CCS. Brigittte's issues are always multi-systemic too, but I pretty much refuse to deal with CCS anymore...I don't deal well with being told one thing in clinic and then having something totally different happen with the new "team" on the floor. I actually utilize the PACT team mostly and they have been very helpful. So I end up being Brigitte's case manager, which is exhausting at times, but nobody knows her like I do and nobody ever will!! And I especially hate 9East for the exact reasons you do!! We did a two week stay in the spring there and although we never moved, we had multiple roommates almost every night and always at 2-3am. They are impossible to deal with.
 
Thanks, Maroo. You know who I have to thank for that? Christine. I've always been two steps behind her in terms of dealing with things, and she's been a God-send in terms of helping me advocate for Ali.

Shannon, I think that must be when I met you and Brigitte. Ali had her GT placed in May - does that sound about right? Jessica and Christine were also inpatient at the time. Who is Brigitte's CCS doctor? We are very, very lucky in that we have Dr. Berry, who is wonderful. He has been there for us night and day. There is no way we could do without CCS at this point, because we need someone to coordinate her care with Dr. Korson over at Floating. It stinks having her team split between two different hospitals.
 
Hi Shannon! I followed you over from Amanda & Piper's PTR. I'm also from NH and we'll be at Disney the same week as you guys. Looks like we might have some of the same parks planned on the same days. (I use Tour Guide Mike too.) :thumbsup2

Your family is beautiful! I'm excited to count down to April with you.

Good Luck with Brigitte's current hospital stay... :goodvibes
 


Kelly, we see Dr. Berry too. Its a really long story..I had a post all written out and then the wireless went down here at the hospital and I lost it!!! GRRRRRR....He is a great guy, just when Brigitte was having ALOT of issues and we were trying to figure out how/when to place the CVL, his wife had just had her baby and he just wasn't totally there for us. I understand, but the ball was dropped in alot of ways and it made a stay which should have been only a few days, turn into a few weeks. Its not just him though, we have issues with lots of doctors who want to just lump Brigitte into the "she has noonan syndrome, so it has to be this way" camp...when in reality, she doesn't play by the NS rule book and can't be treated as such. The general concensus from most of her doctors and genetics is that she also has an undiagnosed disease in addition to the NS and CP.

Amy, welcome!!!! Thanks so much for dropping by. I am going to catch up on your PTR right now!!!!
 
OH NO So sorry to hear about your admission. I see these beautiful px of smiling faces in the snow and then.................. Hope Bridgette is feeling better.:hug:

You did say you're on the cardiac floor right? Is Maura one of your nurses?? If you get her be sure to tell her Matty Crosby says 'hi' ! She's known Matty from the beginning, 7 yrs ago. We saw her last 1/1 when we went in for Matty's birthday.

I've been away from the boards for a couple of days, Need to get caught up!



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
 
Hi,

I've been lurking but just wanted to say I'm sorry about being stuck in the hospital again. Hopefully today things will look up! :hug:

Dawn
 


Will you PM me the info I need to send her a message? I will need her full name, right? You can send via PM to protect your privacy...if you want. :)


Thanks, Maroo. You know who I have to thank for that? Christine. I've always been two steps behind her in terms of dealing with things, and she's been a God-send in terms of helping me advocate for Ali.

I am so glad. It is such a small world!

OH NO So sorry to hear about your admission. I see these beautiful px of smiling faces in the snow and then.................. Hope Bridgette is feeling better.:hug:

You did say you're on the cardiac floor right? Is Maura one of your nurses?? If you get her be sure to tell her Matty Crosby says 'hi' ! She's known Matty from the beginning, 7 yrs ago. We saw her last 1/1 when we went in for Matty's birthday.

I've been away from the boards for a couple of days, Need to get caught up!



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

WOW! :eek: Talk about a small world!
 
Hi everyone!!

Some have asked about sending Brigitte and E-card...if you would like, please feel free to send it to my email address. pnutallergymom@yahoo.com

You are all so kind. Thank you again!!! She would love it!!

Pamela,

Maura says hello!! She has been our nurse forever too!! Luckily, she has been on the last few days and has been assigned to Brigitte!! Gotta love the 8E and 8S nursing staff!!!
 
UGH! I HATE RSV!!! Phoebe had it in January, seven years ago. She was just a baby. I have to say out of all the admissions and surgeries and stuff, our stay for RSV was the worst. Shouldn't have been such a bad ordeal. Hope she's over it FAST!!!!
 
This is from Brigitte's Care Page. I hope Shannon doesn't mind me posting it here. I just thought more prayers and positive thinking couldn't hurt.

Hi everyone,

She just went back about 5min ago. It took ALOT of ketamine to get her sedated enough to leave Bryan and I. They are more and more amazed at how high her tolerance is.

They are going to try and do as much of the procedure with as much conscious sedation as possible. If they end up having to any "interventions" and she needs to be intubated, then they will. There is a big concern that if she needs to be intubated it will irritate her enough that she will need to stay on the vent and will go to ICU...and there aren't any beds available in CICU, so she would have to go to 11south, which is just the "general ICU".

We will get an update every hour from her nurse, Erin. As long as the wireless stays up...I will update the CP...

Love,

Shannon
 
Thanks Miranda!! I don't mind at all!! I LOVE this board. You guys are all so great and totally "Get It"!!

As you may know, Brigitte is back on the floor, resting comfortably.

We did get very surprising news. It turns out she doesn't have a right coronary artery or any of the vasculature that goes with it.

Now the waiting game begins as to what we do about it!!

Thank you all for your outpouring of support. It means so much.
 
Hello! I am yet another lurker on your PT! :goodvibes I sometimes come out of lurking... and here I am! I have been praying for you guys and just wanted to let you know that there are more people than you know who are thinking about all of you guys and your precious kids!! Hope all goes well!
 
Hi Everyone,

Just wanted to let you know that Brigitte is HOME!!!! :cool1:

She is napping right now...and is pretty tired!!

Cardiology is taking a lets "watch and wait" approach in regards to the missing coronary artery. Seems as if the left side has taken over and made its own network to take care of the whole heart. It may create issues down the road, but for now we are perfectly content to be waiting!!

Thank you all SO MUCH for all of your support, prayers and love. :) I LOVE this board. You guys are great!!!! :grouphug:
 
I am soooo glad to hear that Brigitte is home and that the absent coronary artery isn't an immediate threat! We're on our way to the doctor now, but I wanted to tell you I'm glad you're back!:hug:
 
Im so glad to hear Bridgette is home and doing well. Please tell her she is in our thoughts. Glad to hear the other side is helping. We hope and pray there are no problems in the future. hugs!
 
Glad to hear you guys are home and that Bridgette is feeling better. Matty's got one of those 'watch and wait' issues going on with an aortic arch that is folded over on itself (in addition to all the other obvious issues that come with living with 1/2 a heart). Kind of a double edged sword isn't it? So glad that they aren't actually choosing to go in and do something now, yet kind of fearful of the potential that still looms in the distance. Can't spend time worrying about the what-ifs though right? Let's focus on the positive:) Give that girlie hug for us!!!


Pamela:santa:

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
 

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