Tuesday, February 24, 2009

Where Gracie is at today

I'm sorry that it has taken me all day to post an update, its not because today was terrible or hard in fact today was completely different and so much better. The doctors feel that they found the source of Gracie's problems or at least the one that seems to be causing the major problems right now.

Gracie is still has a long way to go, but is definatley better off today then she was the last two days!!!

The blood cultures that were drawn on Sunday night finally grew something, turns out that it is a staph infection. Luckily they started her on an all encompassing antibiotic on Monday, but it is this antibiotic that caused yesterday's horror. The doctors believe that after two doses of the antibiotic it built up enough in her system to start working. Apparently her body just couldn't handle it causing her blood pressure to drop, even today it was still happening. We can't stop the antibiotic because it is the only way to fight the infection, so they give her some Norepi which raises blood pressure with every dose she receives and it seems to be helping her.

Today they also took Gracie off of her paralytic, but she is allowed to have boluses if needed. So far she has only needed one bolus since it has been turned off. Sometimes she just gets so mad and even her major IV pain drugs don't sedate her or calm her down enough.

Since her blood gases are looking good they have been weaning her oxygen levels on the vent, she is now down to 50% which is the lowest they will go until the nitric gas is off. It was my understanding that they weren't going to touch the nitric until tomorrow, but after calling this evening I was told they weaned the nitric from 20 down to 15. This is slower than the normal nitric wean, and I am told that it really doesn't make a difference until she is down to 5...but with Grace moving too fast, even if it is the "normal" slow it is too fast and eventually she fights back and ends up taking several steps back. I feel that today she has made strong strides and that she needs to just rest tonight, so I'm allowing them to wean the nitric down to 15, but that is the only thing they are to do tonight. Grace's night nurse promised me that if Gracie can't tolerate the wean she will go back up. The nurse also agreed to call me if they were wanting to wean the nitric more, because then I will talk to the Attending myself to help him see how slow she really needs to go and that I don't feel comfortable weaning any more.

I just feel that those that aren't familiar with Grace really understand how slow they really need to go, she has been on all of these drugs and gases so many times that she just doesn't like to give them up easily--its almost like you have to go slow enough so she doesn't even realize that you are changing anything.

Anyways now I am rambling...its the exhaustion...Thank you for your prayers, I know that they moved mountains for my Gracie and are allowing us the miracle to still have her with us. May you all be blessed and experience blessings and miracles for your selfless interest and love for my sweet, sweet baby.


The G Fam said...

Deanna and Jason,
We love you guys and are so there for you through this all. Thank-you for being so concerned for our feelings, but do not worry about us, it is you guys seeing your little girl go through this. And although you know how dearly we love Gracie, it is still not the same when it is your own child struggling. And Deanna, you would have to be heartless to not break down once in-awhile. It is healing.
Know how much we truly love you all!
Mike and Em
P.S. Sorry dinner was lame-no more experimenting with food!

Hilary said...

Sigh of relief, I am so glad that they have figured something out. I am so sorry that you have to go through this. She is such a fighter and we will keep helping you with all the prayers and fasting you need. We will be up there thursday. I hope that it is ok to stop by. Much love, Hilary

aj said...

Yay! I'm so glad she is doing better!! Isn't it strange to have all these people you don't know stalking your blog?!

I'm a nice person, I promise :)

I'm Grace Andersen's aunt in case you were wondering. I worry so much for all these sweet heart babies. Our own Grace has been so blessed with miracles, I hope all these babies experience the same blessings :)

summer said...

I am so so glad she had a better day! We will continue to pray for you precious baby.

Christina said...

Yea for better. I will be up on Friday, can I bring you anything???

Hugs & Prayers,
Jacob's Momma

Stacy said...

I am so glad to hear things are looking up a bit. At least they found what started all of this. When my little guy was intubated, he really struggled being paralyzed. One thing they finally tried after tons and tons of pain meds and sedations that kept him from breathing over the vent was a med called phenabarb (sp?) it is normally used to treat seizures. My little guy never had seizures so it threw everybody off that he was on it, but it worked really well for him. He didn't need to be paralyzed, he would breathe over the vent, and seemed comfortable with that NASTY tube down his throat. He was even alert. I am sure it won't work for everyone, but it might be worth asking. It is different from the norm, so maybe no one has thought of it? Our little man is a lot like your Gracie in the fact he had to take things VERY slowly. In fact everyone always wants to hurry and get them off of everything. You are doing such a great job of fighting for your little one. These babies do have withdrawls and when they move too quickly it is just as you said, several steps back. I know you are probably tired of all of us telling you to hang in there, so I will try not to, but we think of you often! please know our hearts are hurting with yours. Please kiss your miracle baby from all of her 'extended' family from miles away! Love, Stacy, Chance, and Corbin

Kimberly said...

Deanna it was so good to hear your voice last night. I am glad that Gracie's health is under control again. You are all in my thoughts and prayers. Love you guys!

Kaidence's Mommy said...

Yeah Gracie! I am so relieved that she is doing so much better. My thoughts and prayers have been with you and your family. I know that Heavenly Father will continue to watch over you. I think that when Kaidence blew out her Birthday candles that she made a special wish just for you Gracie. Rest well today.

With Hope, Faith and Love,
Kaidence and Mommy

Teri said...

Hi Deanna-
I just started following your blog and am so inspired with your courage and your perspective. I am 24 weeks pregnant with my 4th child and and our baby girl is diagnosed with HLHS. As I read your story about your beautiful daughter, I just cry. I am amazed at you and your family's strength. I don't know if I can do this...I just cry all the time. I am certain with our solid faith that the strength will come for us, but right now, you are lifting me up. Your daughter is a beautiful gift from God. You and your family will be in our prayers...I will be following any updates. Take good care.
Many blessings,

Erica said...

So glad that you have answers. While staph infection is scary at least you know what is going on now. Gracie is strong she will fight her way through this too.
I will continue to pray for her and your family. I will be up there next Tuesday. If you need anything or just want to talk. Let me know. I will give you a call when I am there.