Thursday, April 26, 2007

Baby Steps While Brianna Hangs On


I am sitting near the foot of my daughter's bed in the pediatric ICU watching her. Although they assure me she is "sleeping" peacefully, it does not look like it. Her chest is palpitating up and down extremely fast, approximately 600 times per minute. Her eyes don't see us, but they are not fully closed and she has a gel that acts as tears in them. You cannot imagine the number of tubes that are trailing to her body and connected to her. This time is very different than when we were in the ICU before. This time she needs the ventilator to breath - before it was used in the hopes of opening up her right lung more.

Brianna has been in the Pediatric ICU (PICU) since Monday, and so far they've made a little progress towards getting her oxygen requirements under control. As I mentioned earlier, she's on an oscillating ventilator that pumps 600 times per minute little puffs into her lungs to keep all the tiny air sacs open at all times. The issue is making sure that the CO2 in her system gets expelled correctly. If it builds up in the body it turns to acid, and that is detrimental to the organs. So the PICU doctors are pleased that they've been able to decrease the amount of oxygen she's getting. She was at 75%, which is toxic to the lungs. Anything below 60% is much more tolerable by the body.

They were ultimately able to wean her down to 59% oxygen and they've been slowly weaning her down from the ventilator. Her MAP number (a figure that is calculated from several numbers) was initially at 35. They've moved down to 31. When you're at 15 you can go to a conventional ventilator, when the MAP is at 7 or 8, you can be extubated. We've got a little ways to go.

They keep telling us that we're making baby steps in the right direction. I am okay with that. But I want giant leaps in the right direction. At this rate, she'll be in the ICU for weeks. This is so hard to handle. Among all the things I worry about, is her skin. She has a small abrasion on the side of her head where she was laying. Your body was not meant to lay in bed all day so sores on pressure points become an issue.

Of course, our biggest fears come with the diagnosis of what is attacking her left lung. So far, all the "quick" tests from the bronchoscopy have come up negative for bacteria, the five most common viruses and fungal. But the docs say that it will take seveal days for the cultures to grow. That's when the actually put a tiny piece of what they took from her lung into a petri dish and let it grow. If nothing grows, then she doesn't have that. If something grows...you get the idea.

At this point, she is negative for one virus, CMV, and it looks like it's negative on the bacterial. The worst diagnosis would be fungal, because she's been on three antifungals for weeks. If fungus can still grow with all those medicines in her body, then nothing can stop it.

The worry is that this may be viral and if so, there is really no medicine that can be given to fight it. We have to wait until Brianna's body can build up T-cells, or antibodies, to the virus. This could take weeks, if at all, because she is immune suppressed. Her T-cells are purposely being kept at a minimum to ward of graft-versus-host disease (GVHD).

The doctors also tell us that we may never know what caused this. There are two other diagnoses- idiosyncratic pneumonia syndrome (a form of GVHD) and alluvial hemorrage - but neither fits just right and the treatment means steroids. We've been off steroids for a while because they suppress the white count and neutriphils which fight the fungal infection in her right lung.

"Be happy with baby steps," we are told. We are positive and yet we're still holding our breath until all the cultures come back negative.

I am playing soothing music for Brianna, and we are talking to her. My mom and dad have come to read to her and call her their little "teeny bopper," a pet name my dad came up with long ago for her. We hold her hand, rub her arms and feet. Although she is on a paralytic medicine (so she doesn't move for the oscillating ventilator), pain medication and two meds to keep her sedated, we are told that she can hear us. I know she is still in the body I see laying on the bed, and so I told her about American Idol for the past two nights.

On the door leaving the room, I've taped the picture (above) of her smiling face while being licked in the ear by our dog Winston. Everyone loves it and comments what a great picture. I put it there to remind everyone who cares for her and comes in to check her that there is a bubbly teenage girl inside waiting to get out and live life to the fullest again. We just pray that her lungs heal soon and she can be on her way again to recovery.

I cannot tell you how much all your emails mean to us. They are beautiful and speak of lots of prayers from people all over the country. Thank you to everyone. This is such a tiring ordeal and your warmth and caring thoughts and prayers carry us far.

19 comments:

Sam I Am said...

Iva...Im so happy to hear about the 'baby steps' progress... soon those baby steps will be "leaps and bounds" and we must believe that with all of our hearts :)
I think putting the pictures of brianna around her room is a great idea!!! :) :) :)
We won't stop praying for all of you..and I can't wait to see you next week! Thank you for the update..
much love and hugs..
sam

Kitty Forseth said...

Thank you so much for the update Iva. I know you have so much on your hands right now, but it is so helpful to know what is happening.

There is a vivacious, beautiful young woman in that bed.. she may not look it at the moment, but under the medications, apparatuses.. and beeping noises everywhere, she is still Brianna. I LOVE that picture of her, and think it was a wonderful idea to tape it to her door!

I just know that Brianna is wrapped in God's love, like a big fuzzy warm blanket. Hearing the soft music, and knowing that you are near.

We love you Brianna.. and we love you Iva.

Hugggggsssssssssssssssssssss,

Kitty

Sylvia Anderson said...

Iva~ The baby steps are important... and mean that she is on the right path for recovery! I can imagine how frustrating the slow progress is, but hang in there, and keep the faith that she will be back to her normal self soon! We are all pulling for Brianna, and keep her in our thoughts and prayers. You are so strong....please don't forget to take time for yourself too.
Hugs to you,
Sylvia

Ingrid weber said...

My heart hurts for you but We are keeping the faith and prayers going.
Ingrid Weber and family

Kingfisher Farm said...

Iva, I am still praying, and glad for the tiny steps too! One day at a time is ok......you can do that....just one day! The docs are doing their very best, and bless them for keeping you informed about all that goes on. There is a lot of respect being shown to you. BLESS THEM LORD. If you get a moment, please post the photo of Brianna and her puppy kiss. I can just imagine how adorable they are! I hope she is dreaming the sweetest dreams, and that she sees the ponies carrying her in a magical chariot with wings, all the way around the Tour D'Eiffel, through L'Arc de Triomphe, and over the jardins de Versailles! HUGs and SmoocheS, Pam

Carolee said...

Continued prayers being sent up, that those baby steps become giant leaps in Brianna's journey to a full recovery!

~ Carolee

Nancy said...

Thanking God for baby steps in the right direction. Still believing He can do miracles & praying that he will do one for Brianna.

sweetthingsbyarlene said...

Iva...you are such a brave and caring person...like Sammie said baby steps will be leaps and bounds...Brianna is all bundled up with luv surrounding her...Our Prayers and thoughts will never stop...Hugs----Arlene

joanna bolton said...

Sending prayers for Brianna,you and your family.
May hope, faith and courage be your guiding light...Today and always.
Joanna

Sam I Am said...

Love the picture you've added!!!

Christy said...

So happy to hear some baby steppin'... I love the picture of Winston and his good friend! Don't you wish you could bring him in for a visit...Animals are such wonderful friends, so hurry up Brianna and get stronger...all your friends await! Love, Crusty

Emily said...

Iva, I'm praying for you all as well. I read your story in your blog and know you are surrounded by love and blessings.

Emily

Kingfisher Farm said...

Iva, what a gift! What a picture. quote from an early sampler ca. 1840.... GIRL IS SMALL....BUT LOVE IS ALL........................This is ALL! LOVE! Thankyou Iva for sharing this with us, Pam

chelseatroper said...

I went to a concert this weekend, and all I could think of is that Brianna should be there with me. The musician, Kimya Dawson, played a song that reminded me that everything can seem overpowering to anyone. She said that "I like giants, especially girl giants, because all girl feel too big sometimes regardless of there size." Brianna and her family will overcome this. Send my love! You all are my heroes.

jojo said...

OOOO IVA!!! This is GREAT news!!! Just what I have been praying for!!!! How wonderful!!!! I am so happy to hear about the progress!!!THANK GOD!! and I will keep praying and thanking and sending positive thoughts!!! Love ya jojo

jojo said...

Ms Iva and Brianna!!! I am soooo excited to hear about the good news!!! Sending my love to Brianna!! I hope to be able to hug her someday!!! Brit

*retro-rudolphs* said...

Iva,
She's a fighter! It's obvious that you are both very strong women. Though the progress may seem long in coming, it's good that it is coming.
I will continue to think of you all and pray for Brianna's returned health.

Lori

Nina said...

i'm so pleased to hear that brianna is making progress! after the last posting i wasnt sure how to react; i was so scared. even though its just a baby step, as you said, i'm so excited that she's moving in a positive direction.
the picture of brianna and winston made me smile, but it also reminded me how much i miss brianna and her beautiful and energetic smile, and even her laughing about the shirt she's wearing in the picture, dubbing it her "picnic table" shirt. she is such a wonderful friend and i wish her the best. she, as well as you and the rest of the family, will remain in my thoughts and prayers

mewette said...

Iva...My heart, love and prayers go out to you, Brianna and your family:)They say you sometimes have to hit rock bottom before you start climbing back and I believe Brianna is on her way back up:)Hugs and love to you my sweet friend:)
Blessings,
Cory