Our Little Fighter

Caring Bridge Journal Entry Seventeen

Sunday, January 8, 2012 10:35 PM, PST

We're home!

19 days after her first surgery and 10 days since being admitted into the pediatric intensive care unit at Doernbecher for a life threatening infection . . . the Fast family is home.

Even though this is probably the 43rd time sitting on the couch watching Tangled together, it feels like it is the first.

Those of you that know us well know that Grace was a miracle baby to begin with. After struggling with my own health issues since I was a teenager, having children was not a guarantee. We waited a long time for this girl, and as I sit here cuddling up to her I am reminded of just how lucky we are.

Since the vulnerability door has already been opened, I have to admit that these past few years have been a struggle for us- well me especially- because being the perfectionist I am I thought all would not be well until we had the whole 2 1/2 kids, a dog, and a white picket fence scenario. I had preconceived notions of what a "family" consisted of, and in all honesty I lived every moment in the future. It's no joke, that saying: "Life is what happens when you are busy making other plans.".

I promise from here on out to not take my miracle for granted-- to try to live every moment in the NOW. And I know that my one child has enough love, life, and intensity in her to captivate my heart forever.

What's more, I realize that family is so much more than the box I was putting it in. My mom pointed out that there have been over 2,000 visits to this site.

That is over 2,000 people loving us, praying for us, crying with us, and celebrating with us. Now what other girl is lucky enough to have a "family" that big?

It's amazing how clearly you see things after you have been slapped across the face with them. To those of you who have been visiting us here and supporting us through this time: We love you. It is all of you- our big family- that make this life worth living.

Love,
Gracie, Amy, and Greg.

Caring Bridge Journal Entry Sixteen

Saturday, January 7, 2012 8:40 PM, CST

Can't get enough

I'm going to keep this short because Gracie came out of withdrawals today and we have some serious cuddling and playing to do... But I just wanted to say that we got our Gracie back!!! Should be heading home tomorrow!

Caring Bridge Journal Entry Fifteen

Friday, January 6, 2012 11:46 PM, CST

Withdrawal

There was a lot of improvement in Grace today. She's going through narcotic withdrawals right now and has the shakes and can't keep anything in her tummy, but that seems to be getting better every hour. I am trying to remind myself to be patient. I can't wait for her to talk to me, to hear her laugh, and to see some life behind those vacant eyes. Every time I tiptoe close to another panic attack, though, my mom reminds me that if I had been on a five day opiate binge I'd have a doozy of a hang over too.

The chaplain came in to talk with me today and recommended that Greg and I "find someone to talk to" after this whole ordeal is over. My friend, Ashleigh, has already said the same thing, and I know I will never hear the end of it from her until I do, so maybe it's worth looking into. :)

Greg and I have never been great at accepting help, but I think we either get it, or quarantine Gracie in her bedroom for the next 15 years. Something tells me she would have us chose the former.

Looks like we will be here until Sunday, or Monday, or maybe we will just move in. I am becoming dependent on the nurses call button. I think I'll get me one of them.

The doctor went home for the weekend, (He has a life?) and he said if I wanted to keep her here until Monday when he got back he would understand-- not because she couldn't recover just as well at home, but because I am psychologically attached to this place and he's trying to ease me off my dependence on their medical genius just as they are weening my three year old off of narcotics.

Gracie needs to see her friends, though. And I could use some sleep. It's time we come home . . . See ya Sunday.

(Thank you EVERYONE for the visits, emails, calls, cards, etc. We truly have the best friends, family, and coworkers in the world. I won't stop posting - We've got a ways yet to go, but I have a thank you letter to write to some surgeons first.)

Caring Bridge Journal Entry Fourteen

Thursday, January 5, 2012 7:45 PM, PST

Panic outside the PICU

So, leaving intensive care is supposed to be a good thing. But, as I found out today, although Gracie was ready to leave for a normal hospital room, mom wasn't.

Greg and his mom had to leave for McMinnville as Greg threw out his back last night and he needed to get some help for it before coming back tomorrow. Meanwhile, I prepared our stuff to be moved out of the PICU while I waited for my mom to arrive from Seattle.

As we took to elevator up to the ninth floor I felt the relief of being able to exhale. We were away from the continuous beeping and running and suctioning and crying of the PICU.

The nurse got us situated in our room and then quietly shut the door behind her. I looked down at Gracie and looked around the room. Where were the hovering doctors? Where were the sophisticated machines? Were the nurses not going to stay in the room and watch over her bed as she slept?

I noticed Gracie looked a little pale. She was asleep. Had she been sleeping too long? I nudged her. She didn't flinch. I wiggled her and said her name. She stayed asleep. She could barely be sedated and now she wouldn't wake up? I quickly grabbed my phone and called Greg. "Something is wrong," I told him. "Grace is too lethargic.". Greg started asking questions I couldn't process. I began to feel a little dizzy. I grabbed onto the edge of Gracie's bed and stumbled for the nurse's call button. I started yelling at Gracie to wake up and began trying to pry her eyelids open, pleading for her to look at me.

Right then the nurses came in and grabbed me asking me what was wrong. I couldn't speak because I was sobbing too hard.

A few seconds later, Diana, our angel nurse from the PICU, burst through the door and scooped me up, cradling me in her arms. "She's ok Amy. She's Ok. "She's sleeping. She's so tired. She's been through a lot."

Greg had called the PICU when I had gotten off the phone in such a worried rush and insisted that someone go look at our daughter. With one arm around me Diana used her other hand to stroke Gracie's hair. "Hi baby girl," she whispered. "It's Diana.". Gracie looked up at her, yawned, and then fell back asleep.

For a few more minutes, Diana stood there with me in her arms letting me sob into her scrubs. "She's not going to die, Amy. It was really close there for awhile, but she's not going to die. She's going to be ok. She's just been through a lot, and you are going to have to wait a while longer to have the Gracie you know back."

When my panic subsided she left me with the ninth floor nurses and shortly thereafter my mom arrived. I hopped in the shower to calm my nerves and when I came out of the bathroom Gracie sat up in bed, for the first time in a week, and reached her arms out for her mommy.

Let the healing begin

Caring Bridge Journal Entry Thirteen

Thursday, January 5, 2012 9:51 AM, CST

Lookin good

It's amazing the optimism that some sleep will bring. Feeling much lighter and brighter this morning and Grace is looking great. Her eyes aren't sunken in any more, and she is going to the bathroom on her own. The next step is to get the feeding tube out. She is so week from being under for five days that she shakes when she tries to move her limbs.

Grandma Darlene stayed up with her ALL night so Greg and I could get some much needed sleep. My dad finally left last night to relieve my mom so she could come up this morning. Looks like we may even get to move to a normal room today! Life is good. Very, very good.

Caring Bridge Journal Entry Twelve

Wednesday, January 4, 2012 11:20 PM, PST

Awake

Gracie "woke up" today and there were some really happy and hard moments. As I write this I am alone in the hall- the first time I haven't had somebody right by me since this all began... And in the silence the gravity of the situation has finally hit me. My baby is waking up and I am so, so grateful, but right now she is in a lot of pain, and that is so hard to see. I want to take it all away for her. I want to wrap her in bubble wrap, take her home, and play princesses and bake cookies, and build forts until infinity.

I know this wave of hurt will pass for all of us, but right now I want to sit out in the hall and cry for my hurting daughter. The adrenaline has passed, we have been to hell and back and I realize I am left with a lot to process, a lot of hurt to still heal, and a reality to get back to.

In the meantime, we will continue to remind ourselves how blessed we are and how thankful we are for everyone in our lives, especially Gracie.

Everyone has been beyond amazing. We are blessed. And I know, even sitting here in the hall that I am far from alone. You all have commented on how strong Greg and Gracie and I have been, but this one took a village. And as the adrenaline wears off I find myself being fueled by your words, thoughts, and prayers.

Time to get back in there. Thank you for letting these two "strong parents" be so vulnerable. It's time to admit that we need you all very much

Caring Bridge Journal Entry Eleven

Wednesday, January 4, 2012 4:34 PM, PST

Happy girls.

Gracie has been off the ventilator now for about three hours. There is so much to smile about!

Caring Bridge Journal Entry Ten

Wednesday, January 4, 2012 1:48 PM, PST

Breathing on her own!

Gracie was able to get off the ventilator today! We can't wait to hear what she has to say about all of this when she can start to talk. :)

Caring Bridge Journal Entry Nine

Tuesday, January 3, 2012 9:24 PM, PST

Our hero

Gracie had a good day today and the doctor hopes she can take her breathing tube out tomorrow. We are all brainstorming how we are going to take care of her surgical site when she is no longer intubated as even on enough sedation to flatten an elephant she is fighting us every time we touch her.

Her recovery involves "repacking" her wound every 12 hours. (Greg can't even watch, so it looks like I'm going to have "wear the surgical gloves in the family," but again whatever it takes to have our girl home.). She will also need iv antibiotics through a PICC line for a few weeks after we get home.

We are so so proud of our little fighter, so so thankful for our friends and family and forever grateful to the doctors and nurses who saved her life.

When we asked if there was anything that could have been done to prevent this from happening or if she was somehow predisposed to catching this bug, the doctor told us that is was sheer bad luck. Makes you realize how fragile and precious our life on this earth is, and we will never ever take it for granted again.

Caring Bridge Journal Entry Eight

Monday, January 2, 2012 10:42 PM, PST

Getting better every day

Grace is getting better every day and hopefully she will be able to be extubated and leave the PICU by the end of the week. They are weaning her slowly off the oxygen and sedation drugs and she is becoming more and more uncomfortable- trashing in bed and trying to rip her tubes out. But, she can nod and shake her head sometimes, and when Greg and I ask if she is in pain she shakes her head from side to side. When we ask if she is mad, she violently nods. I don't blame her. She has a tube shoved down her throat and she can't talk or move her body (as she is tied down) or open her eyes.

All of this, though, seems like a small price to pay to get to take our baby home at the end of all of this. It doesn't appear that she has any facial paralysis, and we believe she will make a full recovery over time.

I want to especially thank our parents who have basically lived in the PICU waiting room and helped us to not worry about the day to day necessities like clean underwear and food in our bellies.

Everyone has been absolutely amazing. My work family has insisted I don't spend one second worrying about my job at school, and our friends are taking care of things at home as well.

Everyone-- all of you-- every single post, email, text, call, and visit-- have kept us going when we weren't sure whether we'd make it through this. And amazingly, we are filled with love, hope, and gratitude in this trying time

Caring Bridge Journal Entry Seven

Monday, January 2, 2012 4:00 PM, PST

Update

Just wanted to let you know that it looks like Gracie won't get her breathing tube out today after all. She is having some problems with her lungs and the doctors also need to clean out the wound a few more times before they take the breathing tube out because if she isn't heavily sedated it would be a pretty traumatic experience for her.

The put a PICC line in her today because they were having a really hard time getting into her veins. She will be sent home with the PICC line in her when she is discharged so that she can get iv antibiotics at home for at least a few weeks.

We hung up in the PICU room the picture of her standing in front of the yellow chair with the white dress on because it depicts with such accuracy the fight that she has in her. Every time a new member of the PICU team comes in they comment on that picture and shake their heads and chuckle because they are getting a good idea of intensity and determination that we all know makes Gracie, Gracie.

Thank you all for your continued prayers.

Caring Bridge Journal Entry Six

Sunday, January 1, 2012 8:13 PM, PST

Thank you!

We cannot say it enough. Thank you, thank you, thank you for your support and prayers. We know without a doubt they were instrumental in her fighting this thing and winning. Although there is still a lot of recovery that needs to happen first, every one is determined to get her home.

Greg and I have seen some heart wrenching and beautiful things take place in the PICU and have become very reflective. We have also found strength we didn't know we had- restraining our daughter so she doesn't hurt herself when she fights to catch her breath, seeing those little eyes open for a few seconds in panic and find us when she is in pain and forcing calm smiles and voices to soothe her, and learning to read the machines and decipher what is going on when they make those ominous beeps.

We are finding joy in the small tasks of parenting: assisting the nurses in changing her diaper, helping her cough, and pulling her hair back in a ponytail, etc. It all feels so special now and takes on such a new meaning and importance.

The plan is to look one more time at the wound tomorrow to make sure she responded well to the surgery and then try to ween her off the breathing tube tomorrow and then gently bring her out of sedation. It will be a tricky balance keeping her awake but giving her enough drugs to help her pain.

Once she is stabilized in the PICU they plan to move her to a regular room in the hospital, and depending on how fast she heals we could be out of here as soon as the end of the week. We are so happy and thankful for all of you and very, very proud of our little girl.

Caring Bridge Journal Entry Five

Sunday, January 1, 2012 2:04 PM, PST

She's Ok!!!!

So, the verdict is in: Prayers move faster than flesh eating bacteria! Thank you all! Our baby is going to be OK, and we are on the road to recovery now!! That bacteria should've known better than to mess with Gracie FAST. HAPPY NEW YEAR!!!!! We will keep you posted on her recovery . . . it may be a long road, but we will get there!

Caring Bridge Journal Entry Four

Sunday, January 1, 2012 8:50 AM, PST

Surgery later in morning

Hello all- I just wanted to let everyone know that Gracie's surgery was bumped to later in the morning. There was a bad car accident and they are operating on a baby right now, so put that baby in your prayers too.

Greg and I have been overwhelmed with the amount of family and friends who have been supporting us through this time. Thank you so much. This experience has profoundly changed us, and we stayed up late last night talking about how much we cherish each and every one of you and how we need to say it and show it more often.

I woke up a few times to a team of nurses restraining Gracie so that she didn't pull her tubes out, but other than that she looks great to me. The swelling and fever is down, and the doctors say they would be really surprised if the infection was systemic given how well she is doing. I will keep everyone posted when I know what time the surgery is.

Again, thank you so much for your thoughts and prayers. We literally have THOUSANDS of people around the world (from McMinnville, to DC, to even China) praying for her, and I have no doubt it is making all the difference. You have all given us hope, but more importantly you are giving Gracie strength, and for that we cannot thank you enough. Here's to 2012!

Caring Bridge Journal Entry Three

Saturday, December 31, 2011 8:40 PM, PST

Happy New Year from the PICU

It sounds like her surgery will be tomorrow morning possibly around eight or nine. Keep the prayers coming that the bacteria hasn't spread. We are also waiting on her blood test results to see if the infection is systemic.We're hoping to ring in the new year with a double negative.

The good news is her red blood cell count has come up-- It's still not where they'd like it to be, but she is fighting and appears to be winning. So, no transfusion at this point. Her white cell count is still low but hasn't dropped from the first test. She does have a scratch on her face from somehow fighting off the sedation and trying to pull the tubes out of her nose and mouth when the nurse turned her back . . . this is AFTER they added another drug to the cocktail of sedatives she's on. They say her piss and vinegar is just what they like to see, though.

For the most part, Greg and I take turns losing it and being strong. I finally gave into the pressure from many of you and managed to get a few bites of chili in me tonight so I finally have some food in my system. One step at a time . . . that's what we keep telling ourselves when our heads take us places we don't want to go. All will be well. We have a VERY strong girl on our hands. I still remember bringing her home from the hospital at 4 pounds, 10 ounces, kicking and screaming, full of attitude and determination. If anyone can pull through, it is our Gracie. Thanks again for your thoughts and prayers.

Caring Bridge Journay Entry Two

Saturday, December 31, 2011 12:39 PM, PST

Thank you all again for your kind words. And I love the motto "Growl at it Gracie" that seems to be catching. :) It is quite fitting. The surgeon came in a few minutes ago to look inside her wound, and while he did say it is one of the more severe cases of "flesh eating bacteria" (HATE that term) he's seen, it appears that it hasn't spread since her last surgery. This is SUCH good news for Gracie. Keep praying that when she goes back into surgery tomorrow the doctor sees the same thing.

Gracie is becoming known at the hospital as "the girl who cannot be sedated." Apparently Morphine is a little too weak for my litle fire cracker, so they are putting her on something that can make her a little more comfortable. Greg and I keep reminding ourselves that the doctors purposefully put her in this state. It is hard to look at her hooked up to all of the tubes and sedated, but we have to remember that it is just so that she can rest without pain.

Thank you all again. We love you all, and your comments here are helping tremendously.

-Greg, Amy, and Gracie

Our Christmas Scare

This whole journey started on the day of our 7th anniversary when Gracie woke up with a giant, swollen neck, and we found ourselves in urgent care. Two days later she went into surgery at Children's Hospital in Seattle to drain what they thought was an abscessed infected lymph node. After returning to McMinnville we found ourselves at Doernbecher as her condition wasn't improving. After a second surgery we we were sent home again thinking our nightmare might finally be over . . . Little did we know it was just beginning.

Caring Bridge Post Number One:

Saturday, December 31, 2011 9:49 AM, PST

This morning

Not sure how much Greg and I slept last night but it was wonderful to come to this site and read all of your comments this morning. Gracie is hanging in there. They are still trying to find her "sweet spot" with the sedation. When she hears Greg's and my voice she tries to open her eyes and reach out to us. I think, though, it's more likely she's just trying to hit the nurse. She had a little fever this morning and they may give her blood today to bring up her red blood cell count. We are waiting for the doctors to make their rounds and give us more information. All of the nurses say that Gracie is a "feisty one." I tell them they should see her when she's not sedated.

Tomorrow cannot come fast enough for us. I hope that we hear good news after her next surgery and she is on the fast track to recovery. I will keep journaling so people can stay informed on how she is doing. Thank you again for all of your thoughts and prayers. Gracie and Greg and I love you all.

Caring Bridge Post Number Two: