Friday, November 2, 2007

Grier has been moved yet again-- this time it is to the pediatric floor to the semi-private rooms-- I have dreaded this part-- 2 pumps beeping, 2 tv's, no privacy, 1 bathroom and a space about the size of a closet! There is only a walk way to walk around the bed-- and with that you are moving furniture-- We were so well taken car of the past few nights and so far I am getting frustrated here- He started vomiting as soon as we got here and I have called several times for zofran-- Funny-- I could get him morphine in a second but nausea meds needs an act of congress-- And who wants to feel sick after abdominal surgery-! Why they have these rooms is beyond me- Grier is already overwhelmed and this just adds to the problem- And forget HIPPA-- the curtain is not sound proof!

Besides Grier being overwhelmed-- Jeff and I had a huge amount of info unloaded on us today-- We need to make a ton of decisions quickly regarding where to have the next chemo treatment-- There are so many factors to weigh-- and getting Grier home as soon possible where he can be "Grier" is important-- So, we have a call in to Dr. L to help guide this decision- It is possible they could start chemo this Monday or Tuesday here-- I can not believe it but that is what they said- If we decide to stay here Jeff will come home for awhile-- I am glad the surgery happened so quickly without much notice-- but I would love for things to slow down a little since that that part is over- We all need to catch our breath!

They just brought the zofran-- almost 2 hours since the first call in!! This may be the longest night ever-- Good thing-- tomorrow is a brand new day!

6 comments:

Mary Ellen Paine said...

You never stop amazing me. With all that you have been thru you still can look at tomorrow as a new day. You are truely an inspiration to us all. I am so sorry things are so rough for all of you. Tonight in my prayers I will pray for sleep for you,and peace for Grier and quiet for Jeff.
Please know as always you are in our hearts and we love you.
Today in carpool I asked Mitch what he was thankful for. He looked at me with those big eyes and said "Grier". As we all are.
Sleep well.
Lots of Love,
The Paine's

Anonymous said...

Amy,

You and Jeff are awesome advocates for Grier! Boy, I hope they pick things up a bit where you are now because they don't want to get on your bad side.

I sure do hope things look up tomorrow and I pray that Grier can get some rest, peace and comfort, sweet thing!!

I am thankful for your confidence and trust in Dr. L and pray that he will help guide you and Jeff in your decisions for Grier. I can not believe that it is time for more chemo treatments...that seems so quick. I will pray and pray for you all, especially Grier, as you begin this newest phase of treatment. Grier is so precious and so brave...he is bound for success and just needs you all to make the right choices for him! You all are amazing...wow:)

Know we are thinking of you and praying for you non-stop!

Lots of love to you all...
Dina

Anonymous said...

Oh how I wish I could whisk you three back to CMC and the comforts of home! Semi-private is not what the doctor should have ordered! You and Jeff, and especially Grier need quiet, calm, and privacy during this time of healing.

It is doubly overwhelming to have such important decisions to make and Grier to be uncomfortable while listening to other people through the curtain You all seem to handle it so well -- you have in the past and continue to do so. Your strength, courage, faith, and love for each other make us all love and admire your family so much!

I will pray for comfort for Grier tonight, peace and rest for you and Jeff, and a sleeping pill for the "other" person in the semi-private!

Hugs, prayers, and love from The Queen City to the Big Apple,

Betty G

Crystal said...

Amy, wow, I can just imagine how frustrated you and Jeff are. I know you just want to get home. I'm sure you will all feel better after contacting Dr. L and making a plan. I hope Grier's anxiety lessens some, and that yours doesn't get any worse...keep your fingers crossed for a discharge for the kid in bed 2! Mom and Dad, you keep after them for what Grier needs. No one else will make sure he gets what he needs like you will.
Crystal

Anonymous said...

Amy - just had some wine with Cathia Friou. Feel somehow closer to you after talking to her and getting everything from the scoop of the vicinity of where you are to where you are buying diapers to where you mght be ordering take-out. Just seeing her and knowing she's been in touch with you and that she lives in NYC makes me feel more like I know where you are.

Hope you have a decent night - I will leave you a message -Katherine

Anonymous said...

You don't know me- I learned of your story from an e-mail for a prayer request from a friend. I am a RN and also a mother of 3 small ones(5,2 and 7months). Your family's story has truly touched my heart. Each of my little ones are being tested right now for various medical issues- but nothing as serious as your Grier. I cannot imagine what you are feeling. As well as the exhaustion from making decisions and waiting for Zofran. I am so sorry that Grier is being made to wait for much needed meds. I can only imagine how that must anger you and pain you for Grier all at the same time.
I just want you to know that it's not just your family and friends that are praying for you- but also complete strangers! I pray and trust that God is going to uplift, sustain and encourage you- just keep your eyes on Him!

GO STEEL FAB!

GO STEEL FAB!

Go Grier Go Magnets are Here!

Go Grier Go Magnets are Here!

Grier's address in NYC

Grier Christenbury
Ronald McDonald House of New York

405 East 73rd Street

New York, NY 10021

Before 3F8

Before 3F8

After 3F8

After 3F8
30 minutes later

Free Money for Go Grier Go!.. just by shopping online!!

iGive.com

Grier leaving NY-pres and going back to MSKCC

Grier leaving NY-pres and going back to MSKCC
www.cornellpediatrics.org-- Great hospital!

Grier going for a ride in the ambulance across the street

Grier going for a ride in the ambulance across the street
just transporting-- not an emergency!

Grier patiently waiting surgery to remove tumor

Grier patiently waiting surgery to remove tumor
Monday 10/29/07

Go Grier Go Picnic in the Park

Go Grier Go Picnic in the Park
Thanks to everyone that helped!!!

On the way to NYC!

On the way to NYC!

Grier at the "new" clinic at CMC

Grier at the "new" clinic at CMC
Playing with the doctors and nurses 10/19/07

Some of our team at the Hopebuilders 5k

Some of our team at the Hopebuilders 5k

HOPE IS GOOD!!

HOPE IS GOOD!!

Supersib- GRACE

Supersib- GRACE

SuperSib-- HAYES

Grier and his Wonder Pets fly boat cake!

Grier and his Wonder Pets fly boat cake!
I am 3!

Grier & Grace at Covenant

Grier & Grace at Covenant

Grier & Pat

Grier & Pat

Go Grier Go!

Go Grier Go!




Jack and Charlie wearing Go Grier Go T's

Jack and Charlie wearing Go Grier Go T's