Saturday, May 2, 2009

Back at home

We are so happy to report Bree is back home. Her surgery went really well on Thursday. Thanks for all the thoughts, phone calls & comments wishing for a successful procedure for her. She recovered quickly and nursed right away. She seemed so hungry (as she should've been - they starved her for 8 hours!) and she ate really well. Before her surgery I was so nervous because I couldnt give her anything past 6am. She was scheduled for 2pm and they dont like anything to be in her tummy so she doesnt risk aspirating (choking) while she is asleep. Thankfully she did really well. She took a long nap from 6:30-9:30am then played in the toy room. Just when she started to get fussy they called us back to the Pre-op. She fell asleep on my shoulder as we were waiting nearly 2 hours to be called back to surgery...it was a loooong day!
She came out with an IV in her right hand.
This was supposed to last 2 more days so she could finish up her antibiotics via IV. Well, late that night (12:30 am to be exact) the nurses noticed that her IV had come out. She was due to receive 2 antibiotics that night so she needed to get the IV back in. Hesitantly, I woke her up and she got poked several times. I'll spare everyone the gruesome details. Finally, after 4 tries, 3 different nurses, tons of screaming and 2 hours later, an IV in her inner arm was placed. This topped the charts for one of the worst nights we've ever had! It was so hard doing this to a little baby that has no idea why she is getting poked over and over again. FInally, I got her to go back to bed about 3 am and she slept like a rock. The poor baby had such a horrible night. I'm really trying to tone down how hard this was. I think only myself and the nurses that night will know how traumatizing this was for her and me. I know I could have let the nurses take her and place me not see what they were doing, but I really didnt want to leave her. The instant she was done I wanted to be there for her.

Anyway, the next morning I noticed her arm was looking puffy so I called the nurse in and sure enough, the IV was no good anymore because it was infiltrating under her skin instead of her veins. So, they had to pull out this IV too. I was beside myself because I didnt want to put her through what she had already gone through the night before. However, the doc came in and told me that she could get a shot in the leg of her antibiotics and that would last her through the last dose (24 hours). That meant she wouldnt need another IV. Horrah!!! Better yet, he said after her shot he'd let her go home! Yeah Yeah Yeah!!!

She came home on Friday afternoon and was so happy to be home. She was a little apprehensive of her brothers becuase they wanted to see her, kiss her and after everything she went through she was nervous of people being so close to her. Fortunately it didnt last long and she was loving being the center of attention with her brothers.

This Thrusday she will have several tests done to determine if the cancer is gone out of her bone marrow and how much her tumor has shrunk. They will determine if surgery and/or radiation is necessary. The tests she will get will be an MRI, a bone marrow biopsy and a MiBG scan. She will be put to sleep again with general anesthesia. The MRI will determine how large her tumor is, where it is located exactly, and if surgery is necessary. A bone marrow biopsy will tell us if there are any cancer (neuroblasts) cells left. We are specifically praying that there be no cancer found there. The MiBG scan will show if there are any neuroblasts left anywhere in her body. This test will make the cancer cells "glow" and if she does need surgery, it will tell us exactly where the tumor is located & if radiation would be needed. (It's basically a more intense MRI).

I meant to have this posted before Sunday, but it didnt happen and I apologize...Many have asked if we are going to have a group fast for Bree and what to specifically fast for. We thought that since tomorrow is Fast Sunday we thought it'd be a great opportunity to fast as family & friends tomorrow and specificially pray that Bree's cancer be in remission, that there are no cancer cells found in her bone marrow and also pray that she not need surgery or radiation. We know that this might seem a lot to ask of Heavenly Father and regardless of the road to recovery, our greatest desire is that she be completely well. I know I am posting this so late so if you read this after Sunday and want to join in the fast, Justin and I will probably be fasting again on Thursday, the day of her tests, and anyone is welcome to join us.

We are anxious, nervous, excited to finally be at this point in her treatment. I want to know so badly that her body has been able to fight off this cancer completely. Until the next time, here are some pictures of our last stay...

She loved this little car. This stay we went on lots of walks around the hospital. We definitely need to get one of these now. She loves to drive!
She seemed to like this book of Barney and started giving Barney kisses all on her own. I thought it was so sweet.

Since she liked the Barney book I thought we'd try a Barney movie. I had no idea she'd love it so much. Caleb is such a big fan of Barney and now he'll be so excited to watch Barney with Bree!
No more broviac!! She had several skin tears due to the tape around her broviac dressing. Her skin is so sensitive. I'm so glad she'll have the chance to heal now.
As usual, even though she's been through so much, she's still smiling!



20 comments:

the bates motel said...

yeah i'm so glad you guys are back at home! hope all is well. sorry for the drama at the hospital that would be NO fun! but hopefully all will be well and no more hospital stays! let's do lunch soon :)!

Wendy Daw said...

Thank goodness she was able to get a shot for that last round of antibiotics. That night of IV trauma was brutal!!! Poor baby.

She is so beautiful. I love her sweet smile, it radiates the room! We will keep praying for her and excellent results on Thursday.

LanaBanana said...

I'm so glad that you're back home and settled. Hopefully the testing at the hospital isn't too awful for her. You'll definitely be in my prayers this week. She is such a sweet baby!!

Jason and Kate said...

Glad you are back home. You and Justin are stalwarts and are definitely going to heaven for all you have been through. You guys are in our prayers and we hope everything goes well on Thursday.

Annie and Clayton Evans said...

Thank you for updating...you are in our prayers..I am glad she is home we hope everything goes well on Thursday!

Amy Lemmermann said...

Bless her little heart. One thing is for sure...She is loved by ALOT of people!!!

Steph said...

I'm so glad she's home and so sorry she (and you) had such a rough time. I remember doing something similar when Annika was a baby and they couldn't get any blood for their pre-op testing, so after poking both arms and both legs, they ended up taking blood from a vein in her head. It was really hard--I feel so badly for you, remembering that. . . After that, we always just told them to go straight for her head (sounds awful, but much better to have one poke there than many everywhere else). Maybe keep that in mind if she has trouble in the future with getting blood drawn . . . Good for you for toughing it out and staying with her--it's so hard, but it's the only thing you can do for them. . . and I know you've found strength you never knew you had! Kari, you are an amazing person--you've handled this all so well, and Justin, too. You are both great examples to so many of us! We're praying for all to be well with the tests this week!

jessica said...

Hi Kari.

I'm so sorry for everything baby Bree, you, and Justin have been through. I know that as her parents, when she suffers, you both suffer too.

I will be fasting and praying for Bree on Thursday. My prayer will be for Bree to have a cancer free life.

Lots of Love,
Aunt Bow

The Johnson Family said...

I am in tears thinking of her getting the IV over and over. Watching your kids be in pain is the worst...I am so sorry that you had to go through that. Lets pray all the hard stuff is behind you now. Best of luck Thursday...you will be in our thoughts and prayers.

brownymama said...

I'm so sorry that it was such a horrible experience for both of you. I pray that this will all be over soon. xoxoxo

Nancy Pitney said...

Your experience with the IV reminded me of an experience I had with my niece the day after she was diagnosed with Leukemia. The first day they had put an IV in her hand and like Bree, by the second day it was no good. They had to take her into a room and put a new one in. It took a couple nurses, her mom, me and her brother to hold her down. (She was 6 at the time). She kept screaming "YOU'RE HURTING ME!" It was terrible to witness and I wasn't even her mom. She kept saying, "MOM YOU DON'T UNDERSTAND!". It was so hard. I can imagine how hard that night was for you. All that stuff really sucks to go through and you are so positive about it! I'm so impressed! Best Wishes!

Kathleen said...

We'll probably never know how hard that night was for you and Bree in the hospital. I can imagine how much you wanted to make everything instantly better for your beautiful baby girl. It must have been heartbraking to want to run away from the pain of seeing your baby suffer and yet be filled with an even more intense desire to be with her and be there for her and comfort her. I also am thankful that in the end she was able to get a shot instead and then return home! Glad she warmed up to Gunner and Caleb the same day. We are thinking about you every day this week and will especially be prayerful on Thursday. Bree is PRECIOUS!! How cute that she loved the Barney book and watching Barney! She has gorgeous, happy eyes and a radiant smile that defy all the trials she and you have been through. We love you, Bree!!!

embily said...

We love you and have you in our prayers! On Sunday we fasted for little Bree, and we will make sure to think of her again on Thursday. You and Justin are so strong--hang in there!
Emily and Peter

Melissa Bosen said...

Darn it, I was praying that the IV would be a piece of cake. I'm sorry, Kari. I wonder if it was more painful for you than her even. Our little ones forget so quickly, but we remember it so well. I was so relieved to hear that she could have a shot in the leg and be done with that! Sounds like you have some amazing, caring, sensitive doctors on your side.

ctsessions said...

We have never met but I am Holly Farnsworth's little sister. It's funny because I remember going to your wedding reception. Anyway I have been following sweet Bree's story since the beginnig and literally have been praying for "baby Bree" since then. I am not sure why I am telling you this now but I will be praying for her extra hard on Thursday. Good luck with everything this week. May Heavenly Father give you this great blessing. I will be anxious to see the outcome. And you have such a beautiful family and you are such a good mom. I have gained a lot of strength as a mother from your story so thank you!

Cindy said...

My thoughts and prayers are with you!! Teddy had an infiltrated iv in her hand the first time, and it swelled up huge!! I think iv's are the worst to be in the room with- it is torture for everyone! Good luck with all of the tests!! Actually, youre probably done, so I hope it went well! Keep us posted!

Aimee's Family Journal said...

Gooooo Bree! Keep smiling girl. You are almost through it!

The Gerard Family said...

WOW!! You are a strong women, she is always smiling in every picture! You are ALWAYS in our prayers and am thinking about you all the time. I pray that today went well for you!

Jill said...

Oh Kari, I was almost in tears with this post. I can only imagine how difficult all of this has been for you and Bree. You are such a strong and wonderful mother. You may not feel like it at times, but I know you are. I see it in you. Bree is so lucky to have you and we are so blessed to know you and your family. We will keep praying for you, Bree and your family. We love you.

bonnie said...

Excellent news so far for Bree and your family...I'm so sorry to hear the nightmare with the IV poor little sweetie it must have been heartbreaking...I too would have wanted to be with her to hold her and help her but so traumatising for you both. Fingers crossed it will be benign and gone forever so you can put it behind you and move onto your beautiful future together. My prayers are with you all. :) Bonnie x (United Kingdom)