here too. Her B-day card is in the mail and should be on time for her surprise party!

I am still saying my prayers for Nikki,and family, these are tuff times but we are all pulling for you!!!

May God work his magic,

With love the Crowl Family

Karen hasn't updated yet. As soon as she does I will post it. Thank you all so so much for your continued prayers and thoughts! Our faith will bring Nikki home!!

Tom, you are in my prayers.

Updated 8/5/09 6:09pm


Day +53 and +54.
Posted 37 minutes ago
Hello all! Most everything is about the same. We continue to need blood and platelets and are waiting for the gut to heal. I will say that the doctors are way more patient than I am with that. They keep saying that it just takes time. The one concern that started again yesterday is her oxygen needs. She just can't seem to take a deep breath. Pulmonary doctors were by yesterday and today. One wanted to do the CT and the bronchoscopy again when it was just done a week ago and showed nothing wrong. So of course I questioned the need. The other, thank God, doesn't feel the tests are necessary. We also got an echocardiogram this morning to check on her heart. The heart function is normal. So, the plan for now is to continue to get the extra fluid off. It is very likely that the breathing problem is just from fluid overload from all of the blood products/IV's she is getting. We are again waiting to see the Infectious Disease doc as well to get his opinion on the need to change any of her preventative meds or add an antibiotic for any missed pneumonia since her chest x-rays are still hazy? She also got her IVIg today and tolerated it well in a record time of 2 hours. This evening we will recheck her blood counts to see if blood or platelets are again needed and do another dose of lasix. She continues to watch Full House, Aurthor and play games which is great to see.
I want to send out a HUGE thank you to those of you that have sent cards and gifts already. Even though Nikki is in the hospital, everyone is helping us to make it a birthday that she will always remember. Nikki was already spoiled and now it is just getting worse. That is okay in my book because she so deserves it.
Until my next update, we will continue to pray for her breathing to improve, to get rid of the extra fluid, for the bleeding to stop and blood product need to improve, and for her gut to heal. God Bless! Karen

She continues to be in my prayers..God Bless Her..

Still praying here

Thank you God for what you have done and continue to do,we all just pray for Nikki and family Lord that you will comfort them in everyway possible,and let this darling little girl get better enough as soon as possible to go home where she can play and grow and enjoy life without this terrible sickness,and thank you God for drawing us as friends together for this little girl,we are all children of your's and I believe all things that are prayed for with faith will be for the up building of your kingdom,and again God Bless Nikki and Bob and Karen and Ashley a great family that I know are and will be great soldiers for your kingdom....AMEN..............God Bless Ya'll...............Mike,Hope and Mannie the Hawks Family.............. ..............................................

Please prayer

PICU
Posted 2 hours ago
We are headed back to the PICU with breathing issues. Nikki can't hold her SATS and needs more help breathing that what we can do on the floor. We hope this is a short stay.

Love, Nikki's Daddy.

Praying for a short stay in the PICU. Stay strong Nikki.

Beautifully said, Mike. More

that the PICU visit is short and sweet.

Day +55 in the PICU
Posted 10 hours ago
By last evening Nikki was back up to 50% oxygen but was okay with that. We actually slept well. Then this morning she started to struggle with her breathing and for the first time complained that she needed more air. We started a few things on 9B but I knew in my mind that we were headed to the PICU. When I told Nikki that we were moving this is what she said,"Mommy can I have some water to drink before they put that tube in?" I teared up and reassured her that we were not going to the PICU for that and explained about the different oxygen masks that we can't do on 9B. As before the staff have been wonderful and Nikki is resting quietly for the night now after we had to make a room change from our first 505 room. Nikki is now in a positive pressure/ filtered room for her protection like the rooms on 9B. #525 She is currently on nasal bipap and they are weaning her oxygen level down. She has been so brave and cooperative today, and still watched Full House and played Yahtzee. She did have one fever this afternoon and is now on two antibiotics. Her chest xray is still hazy. ?Still fluid or infection? Even though the echo done yesterday of her heart was normal, the blood test today shows that it is not pumping efficiently and they started her on a med for that. So, the goals are- to use the bipap to help open her lungs back up by forcing the oxygen in and push out any fluid in or around them and get her heart pumping stronger to then get the fluid out of her body via the kidneys. We may do an abdominal ultra sound tomorrow to check for fluid and on the liver. We will look to see if any cultures done today grow anything and hold off on doing the lung biopsy that the pulmonary docs want to do. As you have probably guessed the surprise party has been postponed. She has enjoyed opening all the cards and gifts she has received from staff and in the mail as she gets them. So again, THANK YOU all so much for thinking of our Nikki for her birthday. Not sure what we will do this weekend or on her actual birthday but know that we will just continue to take it one day at a time and keep praying for a quick return to 9B. On a positive note, Nikki did have two stools today that were not bloody. HOORAY for something! Just needed platelets twice today. Well, goodnight and God Bless! Karen

Dear Sweet Jesus, please heal our Nikki!

Thanks so much for all the updates!! We are praying for the whole family..

It's so heart breaking to read updates like this one. Continued thoughts and prayers for Nikki and the Denikers.

Been gone since yesterday morning and just home and seen the updates,praying hard for Nikki and family,and for God to heal our beautiful Angel Nikki..........................God Bless....................................

I won't be near the computer tomorrow ........... and just wanted to say an early "HAPPY BIRTHDAY" to Nikki!

Been following your topic(posts) throughout the ordeal ................ hoping for all the best for Nikki and her family ............................ card was sent Wednesday.

Dave

HAPPY B-DAY NIKKI GIRL,GOD BLESS YOU,HOPE YOU HAVE A WONDERFUL DAY,AND GET TO GO HOME SOON............................PRAYING HARD.......................................

I pray that things start easing up for Nikki and her family. I've got to ask a question. Is insurance taking care of all of this? I know everybody can use some help but do Bob and Karen need any additional financial help? On top of the huge emotional strain there has to be a strain on the finances. Can we help?
You are part of our family!

HAPPY BIRTHDAY Nikki, We will be praying for all of you on this special day!

The Lemen's

I've wonder the same thing Floyd,we've sent a few bucks,and hope to send a few more along,It ain't much at a time,but we figured alittle has got to come in handy along,it has to be tough,even if Ins.covered all Med. expenses,there's normal everyday travel and living expenses,so yes if anybody can let us know,let us know and we'll try to help all we can,like Floyd said,WE ARE ALL FAMILY..................God Bless Nikki and Family..........................................

Ma Brewer-Christine should have the answer for us.