~How TWO trips became...who knows? ~ It's a TRIP! and an upgrade.... 4/22

[eyor44]

YAY! for Maroo. Wow! just arriving and you have met so many people. Have a grand time.

 

[VroomVroomLightning]

I am glad that you are having fun! Can't wait to hear all about it!

 

[that's nice]

Maroo,
It sounds like you are off to a good start! Time to find out when they are gonna let people stay for a week for free!

Have FUN!

 

[TarzansKat]

Wow, it sounds like you're having a great time! I can't believe you got to meet everyone right away, that's awesome! I can't wait to hear more.

 

[All7OfUs]

WOW! You are having an amazing time with lots going on! Being interviewed, meeting celebs, and best of all having a week off. You need it!! Continue having a great time, and keep gathering lots of good hints and tips for us.

 

[StefaniLyn]

Back to Magic Meets Discussion...

It says, "My Mommy Loves ME more than The MOUSE"
!

I was just listening to the (I think) live broadcast and you must be right there because I heard them talking about Muffin's shirt (unless someone else totoally swiped your idea and made an identical one)! How cool! You and Muffin are like celebrities at DISMeets! Can I have Muffin's pawtograph?

 

[KathyRN137]

Have fun at Magic Meets!!!


Kathy

 

[maroo]

I was just listening to the (I think) live broadcast and you must be right there because I heard them talking about Muffin's shirt (unless someone else totoally swiped your idea and made an identical one)! How cool! You and Muffin are like celebrities at DISMeets! Can I have Muffin's pawtograph?

Muffin's famous.

They were so talking about Muffin's shirt!

Sure! I will be glad to give you a Muffin pawtograph! Ha ha!!

I actually felt a little like a celebrity there, honestly.

I will have to tell you guys all about it when I get home...but right now I need to give you guys an urgent update...

 

[maroo]

Ok...here's the deal. I really feel like I am on a roller coaster ride with Rachel...and that each time I give you guys information it changes...so bear with me. I am trying to keep you guys update because we really covet your prayers!

I think there was a little bit of a conspiracy this weekend to first get me to be ok with leaving town (even Rachel was in on saying how much fun I was going to have, etc) - she was FINE when I left. And even today they were short on giving me information. Until this afternoon when I finally asked someone point blank how Ra was doing.

So here is the update...

Literally one minute she is talking to all of us like the "old" Rachel and the next time I talk to her Mom she is back to being really confused and sometimes does not know where she is, etc.

The thought now is that Rachel has fluid on her brain that is causing all of her problems. They think that the fluid is what initially caused her to be confused and that the confusion continues when the fluid builds up. Then the fluid messed up her "sensors" for how to regulate that electrolytes in her body. This has started a cycle that is hard to break of her retraining LOTS of fluid (over 20 lbs of fluid at one point) - they give her medicine and she gets rid of some fluid, but then it builds up again.

So literally she goes from doing fine to then doing horribly and back. It is honestly horrible to watch because each time she gets better, we all think she will be fine.

At this point they don't think they can break the cycle. The additional fluid is being stored in her lungs and around her heart. Which is causing problems with her breathing (she already has poor lung function) and heart issues (heart racing to over 200 beats for way too long one night when I was there).

I am missing a LOT of information. I wish I could be there to gain information as I sit with them. But it is too hard for Ra's Mom to deliver information right there while Ra is listening. So I don't know how they know this information. Or what they are doing to fix it. Or how long they think this cycle can continue to support her life.

I am still at Magic Meets. I had a GREAT time today and tried not to let this worry me too much. My flight leaves tomorrow mid-afternoon and the way it works out, I can't get out much earlier anyway...so I am going to stick to my plans and won't be home until Sunday night.

There was a point this afternoon that I entertained leaving today. But even my pastor said I should stay...but also said I needed to get to the hospital as soon as possible on Sunday night.

I am glad I came. This has been a great break from the "real world" that will probably hit me when I get back.

Tomorrow is Hershey Park. I have had a great time meeting Jen (jenb1023) and her family and we are all going to be headed to Hershey in the morning.

When I get home I will definitely update you guys on Magic Meets and try to keep you better posted about how Rachel is doing.

 

[TarzansKat]

Maroo, thank you for the update. What a horrible, vicious cycle this is for Rachel. It just...it just doesn't seem fair. I...sometimes I don't have words, and all I can hope is that my prayers, and the prayers of all your readers here will help Rachel and her family.

I'm glad you're having a good time! You need this, and when you get back, you'll be happy, and rested, and able to tackle whatever you need to because you are MAROO!!!! I have faith in you, my dear.

 

[StefaniLyn]

I can't imagine how diffficult is must be for you to not be with Rachel right now. We continue to pray for her recovery and pray that her doctors have the knowledge to diagnose and treat her illness.

I am however, happy to hear that you are trying hard to have a good time as a celebrity at the MagicMeets - it's a once in a lifetime kinda thing and you need and deserve to enjoy it. Wishing you safe travels tomorrow afternoon. Please keep us updated on Rachel.

 

[MomTo4+more]

Continuing to pray. I don't know what more to say, but I am praying.

 

[Matt1026]

We are praying for you and Rachel and her family!

 

[KathyRN137]

...Continuing to send prayers...


Kathy

 

[VroomVroomLightning]

Rachel and her family and you are in my constant prayers.

 

[shannn]

I continue to pray as well. I know how difficult this is for you, but please take comfort in the fact that Rachel is excited for you to be at Magic Meets and that she will be thrilled to hear all about it. I pray for Rachel & her family, for you, and for Rachel's medical team.

 

[llurgy]

Praying for your dear friend Rachel

So excited that you have had such a blast this weekend. Enjoy Hersheys, we had a good time drooling when we went there with Becca 0-blob years ago, I love the Hershey store

 

[Sandy321]

Maroo - I'm following you on twitter! LOVE your twitpics - I'm angelmum3 btw!

continued prayers for Joyce and Rachel -

 

[maroo]

Sunday Update

Rachel has had an OK day today, I think. I am not sure until I see her myself, though...honestly. I will know for sure when I see her with my two eyes!

Her Mom called today and said that the head CT is what showed the fluid and what they are going to do is first give her something to get rid of the fluid and if that doesn't work, then they will do a needle guided biopsy on the fluid on Monday or Tuesday. They may even do it today...but I highly doubt it...nothing happens on Sunday's at the hospital. I think it is most likely something they will do tomorrow.

Traveling is going ok. I just got to my layover, though and it looks like I may get stuck? The flight to Jackson, MS that was supposed to leave 2 hours ago has yet to leave. Not a great sign.

I completely enjoyed Magic Meets and enjoyed getting to hang out with Jen and her family the most! I am working on my Magic Meets TR, which will be forthcoming...I am trying to take my notes so I don't forget anything as being there for Ra and her Mom will come first once I get back.

I am glad some of you guys have found me on Twitter! I will get back to answering everyone one of your posts when I get back! I have been lax on that since Ra has been sick.

Thank you so very much for your prayers, emails, PM's, and calls - they mean so much to me!

 

[Matt1026]

Welcome Back Home!!! I am glad you had a good trip. I know you are very anxious to get home and the delays in your flight can not be helping that any. Just wanted to let you know that we are praying for safe travel for you home and for Rachel!!!