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

[kellyw8863]

I'm sorry Brigge is feeling poorly. I hope that it's not a line infection and that she's back on the up and up shortly.

 

[pnutallergymom]

Hey everyone,

I write to you from the lovely 2in foam mattress at Club CHB....

Brigitte went down hill fast last night and we needed to get her in ASAP. We are now sitting in ICU as we can't get good control of her HR and Temp. She's been topping out at 178HR and temp at 103.7 axillary.

They want to get this line out and she may go to the OR today....but then we have an access problem as she doesn't have alot of peripheral access and due to her insane vasculature, we can't place a PICC. So we sit in limbo.

I'll keep you all posted. Keep the crazy banter coming!! I need lots to laugh about right now......you know I'm about to head to the gift shop and buy another freakin stuffie!!!!

 

[pipersmom]

I was afraid you guys might be there when you didn't post Keeping you in our prayers, hon! Buy balloons instead..they're easier to get rid of They even had a Minnie balloon at UVa gift shop. Does CHB have an e-card system or anything?

 

[pipersmom]

CBH does have a page that you can e-mail patient from, and Shannon said Brigitte would love getting emails! Here's the link:

CBH Patient email

The emails brightened our days so much when Piper was admitted, let's do the same thing for Brigitte! Just shoot me a pm for the name information! (I've cleaned out my box!)

 

[pacrosby]

Oh Shannon.............that's lousy. I hope things can be stabilized without having to head into the OR. Positive thoughts sent your way.




btw: we're headed into Boston later today to the Travel Show................if you want we can stop by and bring Brigge a stuffie

 

[Momofwishkid]

Shannon, I posted on your Caring Bridge page but just wanted to say you and Bridgette are in my thoughts.

 

[MaryAz]

Hoping that Bridgette is feeling better soon. Hang in there.

 

[yinyanggirls]

Oh man, that stinks. I hate when you are stuck in limbo.

Resist the stuffies urges!!!

 

[jenb1023]

Sending good thoughts that Brigitte will feel better soon! Keep us posted when you have time.

 

[pnutallergymom]

Thank you all so much for all of your thoughts and prayers!!

Brigitte went to the OR last night around 6pm and had the line removed. Her fever curve and WBC both dropped dramatically after that! Phew.....

Unfortunately, her inflammatory markers are through the roof. The team wants to keep her on IV antibiotics for a while. We also now have to figure out how to keep a kid who was TPN/Lipid/Fluid dependant from losing any weight and getting dehydrated. Brigge has never tolerated large volumes through her gut. Which is why we ended up with a line in the first place. So we have alot of work to make up and none of it is going to happen overnight. I am gearing myself up for an extended stay . Nothing with Brigge is ever simple.

We were planning on bumping her feeds by 5cc/hr every 8 hours, she currently gets 35/hr...we moved up to 40 and already she is retching and gagging . So this plan is going to be a work in progress for a looooong time. We may have to talk about another GJ tube....which is a disaster in itself. Due to her many GI surgeries, her anatomy isn't quite set up for doing GJ tubes in Interventional Radiology. She has to go to the OR each time for one and there is only one doctor here in this hospital who has been successful in placing it. We trialed one about a year ago...and well, lets just say it lasted all of about 3 days and she pulled it out. Aye, Aye, Aye!!! What can I say, the girl likes to keep us on our toes!!

We got an unexpected visitor yesterday!!! Bryan happened to be walking down the hall and this "doctor" was asking about "Brigitte K"...he said oh, she's right down here! Wouldn't you know, it was Dr. Pamela!!! Bryan had no idea who she was, so just assumed it had to have been a doctor!! He isn't really aware of my Dis Addiction.....so I can surely see where he was confused!!! LOL!!!

Guess what she had in her hand???? Yep, you got it!!

A STUFFIE!!!!

I will admit, this is a really cute stuffie!! He is a cute little Brown Bear!! Very soft indeed!!

Thank you Pamela!!!! You made Brigitte's day!!

We are hear for the duration!! I will be keeping busy catching up on all the Dis!! Can't wait to start reading TR's!!!

 

[yinyanggirls]

Oh Shannon, I'm sorry about all the complications, but at least you know the source. I always wonder why things are still so hard and so many unknowns in this day and age. I hope something works for her.

And I saw it coming, as soon as you said Pamela.

 

[pipersmom]

Woohoo, I'm glad Pamela made it and you got a little dose of sunshine to brighten your day yesterday! I just commented on your care page, but will repeat here that I'm glad Brigge seems to be improving. Hoping the team will be able to figure something out to work for the feedings!

 

[Mtopher4]

((((Hugs to you both)))))) I'm so sorry you had to go back to the hospital

Glad the bear cheered her up

 

[Thumper321]

So sorry to hear you're going to have to stay for a while, but I know that you are so glad that Brigitte is on the floor instead of ICU. I hope that she continues to improve quickly and that you guys are home soon.

 

[Maryrn11168]

Glad to hear Brigge is getting better!!! Sorry your stay is going to be a long one...My son is the same, he doesn't do anything half way...if he's going to get something he's going to get everything!!!! No little infections here!!!

As for the stuffies....I do not know how my son fits in his bed with all of them I used to take them away from the dog so he would rip them, now I give them to the dog while the kids are at school!!!!

 

[Momofwishkid]

Shannon I so sorry it looks like it will be a long stay but glad Bridgette is feeling better and Pamela made it in to see you guys and brought a stuffie I have to admit Im one who loves them.

 

[pnutallergymom]

More Stuffies!!!

They are beginning to invade the room. The new addition is an Ugly Doll!! He's purple. Have you guys seen these things?? Seriously, they are ugly!!! Definitely one for the barrell burn, or I could give it to the dog. She would LOVE it!! Or maybe not...it truly is Ugly!!!

At least someone came to their senses and brought us a Mickey Mouse Clubhouse DVD....Brigitte's mood changed instantly!!

The nurses know us pretty well up here...as do the custodians, food service people, and on and on and on...... Perks of being frequent fliers, I guess!! Anyways, they all know she is going to Disney on her wish trip to see Mickey, so we have Disney all over the room!! Stickers, books, pencils, notebooks...someone even found some MMC dominoes!! Someone is always dropping by with what they "stole" from the other floors!! She even got a Mickey pancake this morning....but she didn't touch it So, mom had to eat it...just terrible .

She had a rough night last night..lots of visceral pain from trying to push feeds. She's maxed out on her neuropathic pain meds, so nothing to do but shut them off and give her a break for a bit. She's sleeping alot, which is completely out of character for her. She's not feeling well at all....

I can't wait to get to Disney!! I am so happy that some of you are going soon!! Selfishly, I need some more reading material!!! Looking forward to hearing about the send off parties this week, though!!

 

[kellyw8863]

I actually LOVE the Ugly Dolls! Weird, I know. I'm sorry that Brigge is still feeling so poorly, but I'm glad that they're treating you well! What does she take for the visceral pain? We've only tried Neurontin, but it made Ali's behavior unmanageable, so we had to take her off of it.

Can you believe we're under the two month wait?!

 

[Momofwishkid]

Im so sorry Bridgette is having so much pain. I have never heard of the Ugly dolls. Im going to have to look them up. Im glad they are all treating you well and will try to update soon after we return so you have some new stuff to read.

 

[Wee Annie]

More Stuffies!!!

They are beginning to invade the room. The new addition is an Ugly Doll!! He's purple. Have you guys seen these things?? Seriously, they are ugly!!! Definitely one for the barrell burn, or I could give it to the dog. She would LOVE it!! Or maybe not...it truly is Ugly!!!


She had a rough night last night..lots of visceral pain from trying to push feeds. She's maxed out on her neuropathic pain meds, so nothing to do but shut them off and give her a break for a bit. She's sleeping alot, which is completely out of character for her. She's not feeling well at all....

I'm so sorry to hear she's in so much pain --she's in my prayers.

One thing though -- I really dislike most stuffed animals, but I actually kind of like Ugly dolls!! Their ugliness makes them kind of cute. And I love the "write up" that comes with them re their personality. It's kind of fun. They're actually "cool" items among older kids (my older girls are almost 10 and 12).

Also, about the neuropathic pain -- Elke suffers tremendously from neuropathy too (from one of her chemo meds). She's been on Neurontin, and they continuously had to up her dose until our chief oncologist said it was time to consider something else. So we're trying Elavil. Our oncologist said she actually prefers it to Neurontin for neuropathic pain, and she specifically said she thought it treated GI issues better (Elke's had a lot of those). Have you ever looked into Elavil? You've probably been dealing with this a lot longer than I have and know all the ins and outs, but I thought it was worth mentioning.

Hoping things improve for your sweet girl!