Hoping the Birthday Weekend went well, our card and gift will get sent today my car would not start, of course, while Scott was out of town !!!!

Prayers still coming your way Nikki

HAPPY BIRTHDAY NIKKI!!!
Posted Aug 7, 2009 11:49pm
My update is about day +56 but as I type this I noticed that it is already Aug. 8th, and Nikki's 7th birthday. Although she wasn't really born until 8:01pm. Certainly not the place ANY child should spend there birthday but the important part is that we are blessed to have her. Nikki has had a pretty uneventful day. Not much has changed. We are still waiting to see if what we are doing is the answer. Atleast at this point she is no worse and alittle stronger. She continues on the nasal bipap and tolerating it well. Only minor changes to the settings. She slept all morning and then got out of bed to a chair from around 3pm to 11pm. Watching TV, Full House, beating me at Yahtzee and playing on the computer. The PICU nurse said that they are not used to their patients being out of bed all day. The pain in her belly is improving and again no bleeding seen. The size of her abdomen has also gotten smaller. Thank you God for that answered prayer. Her platelet level has been better and she only got them once today. Also received blood once. Her liver numbers and billirubin are still elevated but okay for now So, the main area of concern for now is her breathing. Please God, let Nikki feel more comfortable each day with her breathing and be able to wean from the oxygen and bipap. Once we do that I am sure she will start to eat since her belly feels better. But as we say, one day at a time.
So, the cards and gifts just keep coming. Nikki had a good time today opening things and has loved everything that she has received. THANK YOU ALL SO MUCH!!! Bob and I will do our best to make her feel special for her birthday, even though we will remain in the PICU. I will let you know later how her day goes. Well, God Bless and goodnight, Karen

Day +57 and a good day it was.
Posted 1 day ago
For being in the PICU, we had a good day. I wasn't sure how it was going to go when she woke up this morning with right flank pain. We did some tests but I haven't heard that anything was abnormal and the pain is now gone. When the doctors rounded I heard that her chest xray looked so much better than yesterdays and that she is moving alot more air now. Hooray!!! Nikki is improving slowly in many ways. Nikki was in good spirits and wanted to stay busy today. Bob and I did not give her our gifts and are planning to still have a party when we get back to 9B. I don't even think she noticed that we did not give her gifts because she got so many. We sang to her, played yahtzee, played Little Kitty bingo and much more. When she took a nap, Ashley and I had some real fun together. Well, I need to go because I can't keep my eyes open. Thank you all for the cards, gifts and messages. Taking one day at a time and praising God for answered prayers. Keep them coming God!
Goodnight, Karen

Day+ 58 and 122 days in the hospital.
Posted 10 hours ago
Another day in the PICU. Nikki improved in a few areas today and is still being our brave little soldier. I was alittle disappointed this morning when the chest x-ray did not look any better but I need to remember that these things take time. We started to wean some of her meds and this will certainly make the liver happier. All of her cultures remain negative. She remains on nasal bipap and is stable on that. They did put her on high flow nasal canula twice today for a change. After we convinced her to try the canula (she would never try a nasal canula on before) she realized that it is more comfortable and did not want to change back. The second time she got too tired before the hour mark so we switched her back. She sat on the bed saying "play something" as she fell asleep sitting up this evening. She does not know the word stop and this is a good thing as she keeps fighting to get better. What a little fighter. Her belly felt okay today as she has started to plan what she will drink when we get back to 9B. When using the bipap you are not allowed to eat so her gut is resting and I believe healing well as no blood has been seen for 4 days now. No blood today but did need platelets. Nikki was actually talkative today and even alittle with her nurse which she rarely does. She has been so cute as we sing her prayer every night together. The bipap makes it harder to talk and this just shows her strength. Tonight I pray for an improved chest x-ray (they do one every morning) and healing for her whole body. Taking one day at a time. God Bless and goodnight.
P.S. Dr Goyal will be back from India tomorrow. Maybe he will have the piece to this puzzle.

I posted the updates for the last 3 days! Nikki is doing good. She is still in PICU, but she is getting stronger!

You guys are the greatest!! Keep the prayers coming! Nikki will be home!!

TTT....... .........

Day +59 and very busy.
Posted 10 hours ago
I really do not know where today went. Nikki and I got little sleep last night and I am not quite sure why. It was just one silly thing after another with bad timing but she was medically stable. Then around 6:30am we both just crashed. The next time I opened my eyes it was 10am. I was so happy for the sleep yet so upset that I missed morning rounds with the ICU team. After I gathered my needed info for the day I was busy with Nikki and talking to doctors. Nikki "looks" great. All of the swelling is gone from her face down to her toes. Her belly is also smaller. They took her oxygen level down all day, but about an hour ago put it back up. She has been exhausted today. Only watched alittle TV, talked with staff, and opened mail. Otherwise she rested or slept when we weren't off the floor for another CT scan. First, I need to say that opening the mail that was delivered just today took all afternoon. She received 26 cards and packages. Then when daddy came he brought more. Nikki has so enjoyed all of them. Thank you all so much for letting me see her smile as we talked and enjoyed the creative gifts, the musical cards, the kind messages, and even a card that had flashing purple lights. So, back to the fact that we did another CT scan today. Her chest x-ray was slightly improved but we are not improving as much with her breathing as we would like. Hopefully the high resolution scan this time with the fact that all of the fluid is gone can give us more answers. If it doesn't and her lungs hit a stand still, we may still be forced to do the lung biopsy. I really do not want to go there. Nikki was so brave with getting her peripheral IV heplock for the test. The nurses and IV team are just great with her and she has just shown even more bravery with this stay in the PICU. Lets pray for good results and answers tomorrow. We did wean a few meds again today including her IV steroids so this is always a good thing. She received blood and platelets this morning. She did get a small fever this afternoon and we checked blood cultures again. Her billirubin number and other liver numbers looked alittle better today. The biggest news for the day came when I spoke with the cardiologist. He feels that Nikki has a strong and healthy heart. That she does not have congestive heart failure and only a mild issue that many healthy people have. His orders are to wean her from the cardiac med she is on and get a repeat echo in 6 to 12 months. And what does this mean? That all of her organs are doing better except for her lungs and we still do not know why. Most likely it is an infection that we can not find. How frustrating. Well, as I said, a busy day. Please focus your prayers for Nikki to have better breathing and healthy lungs again. Taking one day at a time.
God Bless and goodnight. Karen

Nikki is our little fighter!

Right on!!!!!!!!!!!!!

quote:

Originally posted by Ma Brewer-Christine:
The biggest news for the day came when I spoke with the cardiologist. He feels that Nikki has a strong and healthy heart.

No doubt, heart of a lion!

I am happy to hear about her heart, but very saddened to read the latest update on her carepages. I'm sitting here on my lunch hour crying and have to get it together in 9 minutes... I just feel so bad for Nikki and her family.

We will continue to pray hard that things turn around for Nikki. She is always in our thoughts... God, please -- just let this little girl get well.

Not what I wanted to hear.
Posted 37 minutes ago
I am not sure how to start this update. I am full of many emotions today. You know it is not good news when the whole team comes to get you and takes you to a room to sit and talk. The CT results are extremely worse than the last ones done. I don't know how to read CT scans but it was very easy to see the differences. This is not good news. The fact that her billirubin took a jump up today is also not good news. So now what. We are now stuck and have to do a lung biopsy ASAP. And if possible we will also do a liver biopsy. This is so hard because it will now be an even longer time before we can get out of the PICU and we do not know what will happen next. I do know that she will have chest tubes after the surgery for atleast 48 hours. Chances are she will remain intubated and on the ventilator after as well. The lung biopsy may show us an infection, inflammation (IPS or GVHD), cancer, or nothing. The liver biopsy may show GVHD. I just don't know how much more she can take. I have decided that we should no longer save her birthday gifts and we will start to let her enjoy them now. For it may be a long time until she can again... I am doing my best to keep my chin up because with Nikki anything is possible, especially with God on our side. Lets continue to have faith knowing that our brave little soldier will and must win this fight.
God Bless, Karen

God, please bless our Nikki! Lift her up and heal her lungs! Amen

As I sit here typing this through my tears, I can only imagine the pain this is causing all of you. I pray for Nikki & your entire family every day and wish there was something I could do for you. Please God shine your loving light on this family and let Nikki get well.
Susie (aka Mrs. Homegrown & Head Cheerleader for TEAM CRB)

Oh my dear most presious God in heaven,we as a family come to you as humbly as we know how,and pray that you will take your mighty hand and touch little Nikki,dear God her little body has to be so faile,by now with all that she has went though,please,please Dear God,I pray you will and can heal her from this terrible disease,and send her to her family well,and let her have a little girls life,my heart is so saddened with this news of her back set,but I know you can do all things,Bless her Family and make them strong,this is my pray,thank you for what have done and what you will do.......In your presious name AMEN............................

Bob and Karen you are all in our thoughts and prayers,I just wish as others has said,that I could do more,it is in Gods Hands...........................................

Please join us tonight at 9:00pm as we lift Nikki in prayer. We have been praying for Nikki every night at 9 across this great country. God is hearing our prayers. Nikki needs our strength and God's comfort. Our faith together will get Nikki well.

Mike, you're not helping the lump in my throat get any smaller. Oh well, me 'n Floyd needed new keyboards anyway.

I can't imagine the feeling of being told the whole team wants to talk. For Nikki's healing and strength, for relief from the pain, for Karen and Bob, for Ashley, and all of their family, and for the great doctors and nurses,

Oh Man, this is hard to read. We are all praying here.

Day +60 comes to an end.
Posted 9 hours ago
Not much more to add to my earlier post. Nikki slept alot today but still got out of bed for awhile and played on the computer. Her breathing is unchanged on the bipap. She is drinking more water and asked if she could have a Slush Puppy Pop. The docs are okay with her having some tomorrow if she is alittle more awake. With some of her bloodwork today and the slow working liver, she is alittle drowsy and falls asleep easily. We decreased her pain meds and hopefully she will be more awake tomorrow. The surgery is scheduled for thursday the last I heard. Tonight and tomorrow we will continue to open more birthday cards and gifts. She is just enjoying this so much and I am so thankful for all of you. Please focus your prayers on Nikki's lungs and the results of the biopsies. God please hear our prayers. Goodnight, Karen

God bless our little soldier!

Our hearts go out to Nikki, Karen & their family. We pray for healing so Nikki can go back to being just a little girl

X100

Praying and waiting for goooood news...Thoughts and prayers for the entire family.

Mike