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

[jenb1023]

Glad to hear things are better! I hope they can give you guys some answers soon!

 

[All7OfUs]

I'm so glad she's doing better today. I think she will have ups and downs, but overall this is great news! She really scared the pants off of us! She must be a strong, strong girl.

 

[eyor44]

Wonderful news this morning. Hope the tests turn out well.

 

[Sandy321]

*smile - she wants to upgrade to an iphone!!! as well as

Maroo - how are you doing?!

 

[maroo]

Monday Update #2 - ICU

Well...we have reason to stay guarded here. She has had a rough afternoon with her oxygen sats (requiring more oxygen than yesterday) and her numbers are not looking as good as they were this morning.

In the meantime, they have just let us know the "unofficial" results of her chest scan, which indicate double pleural effusion (fluid on her lungs), a double collapsed lower lobe (both lungs), and cardiomyopathy (all 4 chambers of her heart and the pulmonary artery are enlarged). The official results will come later when the doctor that actually ordered the test weighs in.

This all sounds very bad...and could be. But it also could be what it 'normally' looks like. We know Ra has fluid on her lungs, that is something the pulmonary dr was worried about a month or more ago. And they already know she has heart "damage" from the MPS. But this is keeping her in ICU for now.

They should be able to get the old scans to compare to and/or get a heart scan to check the function of her heart. And that should clear the picture up for us.

*** Addendum: Just got a text that the numbers indicate she is in congestive heart failure.

Please pray.....I have no idea what that means. But please pray.

 

[Sandy321]

Dear Heavenly Father - we join together in prayer and lift RAchel up - her needs are great dear Lord - you are her Father in Heaven and we know when 2 or more gather in your name - you are there - we know you are with her dear Lord - please surround Rachel and Joyce in your peace Lord - we ask Lord that you be ever present in this difficult time - we know not what to ask Lord, but our faith sustains us, knowing you are with Rachel and Joyce -

 

[eyor44]

Lord, please lay your healing hands on Rachel and support Joyce with your loving strength. Please give Mary the strength she needs to be there for both of them.

 

[tinytreasures]

prayers sent

 

[llurgy]

Praying so hard for Rachel, your dear friend! So sad to hear this news when I was so excited to hear that she seemed tp be pulling out of it.
I have in my mind some Halloween (I think it was) you posted some pics of you and Rachel...I am seeing those pictures in my mind, when you were both so happy and laughing together and envisioning a Rachel restored to the health she had then.
Those were wonderful pics, but I cant find them again.

Praying

Love
Mandy

 

[jenb1023]

I am so sorry! I hope that they can find answers. Still praying.

 

[TarzansKat]

Maroo, I continue to pray for your dear friend and her whole family. May God bless you all.

 

[kimmylaj]

still praying

 

[maroo]

Monday Update #3 - A ROOM!!!!!

Well...no echo results - but they are moving us out of the ICU!

They had several additions to the ICU tonight and Rachel was the "most ready" to leave! So we are GONE from the ICU to make room for some more needy patients and will be eventually settled into a regular room tonight.

On the way to move all of her stuff her Mom stopped short in the hallway and looked at me and said....

"You know, we need to get her well so we can go to Disney World."

and


I want to get her to Disney World so bad! I want Rachel and her family to have a wonderful relaxing time in Disney. I have spent time with Justin and Gina and heard Ellie stories all week long. I have met Rosemary and cried with Joyce. We would really be due for a nice trip and we would all have so much fun.

So we have a goal. Disney.

 

[If U Had Wings]

I'm glad to hear that she's being moved to a room. Lots of prayers still heading your way.

 

[MKBekka]

Yay, she's getting better! I finally got all caught up! I am SO happy for you!! After all this Rachel's family deserves a Disney trip.

 

[eyor44]

I'm praying Rachel had a good night.

 

[MomTo4+more]

Still praying.

 

[Sandy321]

Thank God for Disney!

Still praying!

 

[TarzansKat]

I hope everything is going well. Having that goal of Disney may be a god send, you know? Something to look forward to at the very least.

 

[maroo]

Tuesday Update

It has been a week full of ups and downs. But it seems like we are taking a turn for the better for sure!

My third hand information this morning is that the heart echo was "fine" - I tried for more details and failed miserably!

But she is in a room and is in good spirits this morning despite a very long night of only 2 hours of sleep.

Please keep praying for her! I am not able to be there today, as I am taking care of Lauren and William after work today through tomorrow, so I won't see Ra again until tomorrow as long as she is doing ok.

Ra has several friends in town to help, so Joyce is getting a little break today, which is great!!

So...no news from me for today will be GOOD news!!!