Jump to content

Update for Jordan

RebeccaVelasquez

By RebeccaVelasquez
in Comfortghans

Recommended Posts

  • Replies 552
  • Created
  • Last Reply
RebeccaVelasquez Proficient

RebeccaVelasquez

Posted
  • Author
Posted

(forward from her dad of a note from her mom)

I know some of this medical jargin, but here is the latest. I will email Thompson or Rusty when we know more.Thanks

 

I JUST TALKED WITH HER INFECTOUS CONTROL DR. AND HE SAID THAT HER SPINAL TAP CAME BACK AND IT WAS POSITIVE FOR THE BACTERIAL SPINAL MININGITIS. SHE IS

VERY CRITICAL HE SAID. HE ALSO SAID THAT HE CAN ONLY DO WHAT THE ANTIBIOTICS CAN DO. THAT MEANS THAT WE HAVE TO PLAY THE WAITING GAME AND TRY A NEW BATCH

OF ANTIBIOTICS TO SEE IF THEY WORK. HE WANTS A SPINAL TAP DONE EVERYDAY TO SEE IF THE BACTERIA IS GONE OR PROGRESSED. HE IS ALSO DOING A RENAL ULTRASOUND TODAY TO SEE WHAT IS GOING ON WITH HER TUMMY. HE WILL ALSO ORDER A CAT SCAN OF THE HEAD TO SEE WHAT THIS IS DOING TO HER BRAIN, HE IS SURE THAT THIS IS THE REASON FOR THE HEADACHES BEING SO SEVERE. HE SAID I AM PRAYING FOR YOU GUYS AND THAT WE HAVE A LONG SLOW ROAD OF TRYING TO GET THIS OUT OF HER WITHOUT IT DOING GREATER HARM. HE DID SAY THAT HER WBC WERE ONLY A .2 TODAY WHICH IS BADFOR THE TRANSPLANT BECAUSE IF IT DOES NOT COME UP THEN SHE CANNOT FIGHT INFECTION. BUT IT IS GOOD FOR THE MININGITIS, BECAUSE

IF IT COMES UP THEN THERE IS MORE INFECTION, THE MININGITIS GROWS AND THINGS LIKE HEARTATTACKES, AND BRAIN SWELLING AND MORE SEVERE PAIN STARTS. SO, I

GUESS MY BABY IS DAMNED IF YOU DO AND DAMNED IF YOU DON'T. I ASKED DR. HOWRY IF I SHOULD CALL IN ALL THE FAMILY. HE APPARENTLY IS DOWN PLAYING THIS MORE

THAN THE INFECTOUS DISEASE DR. , BUT HE SAID " I KNOW THATSHE IS SEVERELY UNCOMFORTABLE AND ONLY LAYING IN THE BED", BUT I AM UPING HER FENTINAL PAIN

MEDS TO 30MG EVERY 8MIN. AND WE JUST HAVE TO UNFORTUNATLY PLAY THE WAITING GAME AND SEE HOW HER BODY RESPONDS TO THESE NEW ANTIBIOTICS". SHE LOOKS SO NOT LIKE OUR DAUGHTER. SHE HAS BEEN IN THE BED SLEEPING NIGHT AND DAY WITH NO WANTING FOOD OR WATER, NOT WAKING UP EXCEPT TO VOMIT HER BRAINS OUT OR TO SCREAM IN EXTREME PAIN FROM HER HEAD AND TUMMY. SHE DOES NOT WANT TO TALK, EAT, PLAY, MOVE,OR BE TALKED TO OR EVEN HAVE THE LIGHTS/T.V/RADIO ON. SHE IS ONLY 8 YRS OLD THIS IS NOT RIGHT. SHE CAN'T BE A KID OR EVEN FEEL LIKE IT.

WHEN A DR. SAYS TO YOU I AM PRAYING FOR YOU. DO YOU REALIZE THAT YOUR HOPE, DREAMS AND HAPPINESS DROPS OUT OF YOU FASTER THAN FALLING OUT OF A PLANE.

IT IS NOT FAIR. I'M NOT SURE OF HOW MUCH SHE CAN TAKE OF THIS. SHE IS SUPPOSED TO BE REJUVANATING HER LIFE. I LOVE YOU I WILL TALK TO YOU WHEN I KNOW MORE.

 

 

 

 

 

i don't know even know how to respond to this, as a mother, i ache for her.:cry

Link to comment
Share on other sites
antara Enthusiast

antara

Posted
Posted

I'm certainly keeping Jordan and her family in my prayers. I really hope things start looking a lot better soon. I can't even imagine what her mother must be going through, having a child in so much pain. :cry

Link to comment
Share on other sites
HollyM Enthusiast

HollyM

Posted
Posted

Oh no <img border=0 src="http://img28.photobucket.com/albums/v84/crochetville/worried.gif" />

 

How awful for all of them. I hope Jordan can overcome this latest setback. She is still in the front of our thoughts.

 

Thank you for keeping us updated

 

Holly

Link to comment
Share on other sites
RebeccaVelasquez Proficient

RebeccaVelasquez

Posted
  • Author
Posted

From Billy:

Jordan has been doing better, but the doctors found bacteria in her spinal fluid still. As I told Rusty, her white blood cell count is coming up which is a good thing for the transplant but a bad thing for the infection. They had to give her platelets again last night, of which they were not real happy with, they would like her platelets to be higher right now. I do know that she was up for most of the day yesterday and smiled a lot. Plus, I got a kiss so that, to me is much improved. We are not sure how good she is doing because of the bacteria in her spinal fluid. Things are still touch and go and other than what news we have now, I think they are still a little worried. Oh, one more good thing is she has not run a fever in two days. Please pass this on to everyone. I know I

scared everybody Tuesday, but it has been a scary situation here. It's definitely a good thing I did come because I have had about 4 hours of sleep since I've been here.

Link to comment
Share on other sites
Julie Rising Star

Julie

Posted
Posted

I'm glad to hear she smiled yesterday. That's such a big thing unto itself. I'm still praying for her and her family. <img border=0 src="http://img28.photobucket.com/albums/v84/crochetville/veryhappy.gif" />

Link to comment
Share on other sites
Deb Collaborator

Deb

Posted
Posted

I'm glad she has these improvements... even if they are small. I think about her all the time... and send prayers heavenward often. :)) :))

Link to comment
Share on other sites
  • 2 weeks later...
mythunderbird Experienced

mythunderbird

Posted
Posted

hi rebecca, i would also like to make this brave little girl something, do you have any suggestions. i just bought the carebear pattern book, do you think she might like that? please let me know. i know this is a old post, but i think even now she might like stuff don't you. i am praying for her, poor little angel. please let me know if i can help. thanks so much vicki:)h

Link to comment
Share on other sites
RebeccaVelasquez Proficient

RebeccaVelasquez

Posted
  • Author
Posted

she is 8 yrs old. (i think i originally posted that she was 10). i think if you want to make her a carebear, that's great! anything you want to do is fabulous. her favorite color is purple. i do know she just received a game boy as a gift from hubbys (and her daddy's) office. i don't know if she has a case for it or not... i could find out. anything anything anything

:hug

Link to comment
Share on other sites
mythunderbird Experienced

mythunderbird

Posted
Posted

hi rebecca, i will make her a purple carebear and when i get it done will contact you. i just finished reading some of the posts from earlier this month, is she doing alright now. i am praying for her and all of her family and friends,. she is such a little girl and so brave having to go through all of that. i will hurry and get it done:) thanks for letting me know. take care and if you get a chance please tell her parents that they are all in my along with everyone elses prayers here. have a super day. tomorrow is my birthday so what a nice present to give myself, i will work on it tomorrow. have a good night. vicki:angel

Link to comment
Share on other sites
RebeccaVelasquez Proficient

RebeccaVelasquez

Posted
  • Author
Posted

Here is the latest news on Jordan,

>

> From Billy,

> I'm sure all of you are anxious to know how Jordan is doing. Well, I'm happy to say she is doing a lot better. All her blood cultures have come back negative for all the infections she had., that is great news. The swelling due to all the liquids she was taking has gone down a little bit and her color looks really good. She is still a little loopy, but as the doctors taper off her meds she will get better with that. Jordan is on a special "GVH" - graft-verses-host, diet. Which means that she gets one thing to eat at a time with water. It's kind of rough because the food is really bland. Mom and Jordan get to moved to a bigger room this past Monday. Keep the prayers coming because they are working. Thanks guys!

>

Link to comment
Share on other sites

Archived

This topic is now archived and is closed to further replies.

Go to topic listing
×
×
  • Create New...