Hurry Up and Wait (A common phrase that long term hospital families understand) for me, it has turned into something more like: Frozen in a State of Impatience.
Here we are on Day +539 Post BMT
Currently been home 3 1/2 months since our 3rd long term hospital stay.
580 Days spent inside Hospital walls. (Thank goodness none recently)
Bella is now 2 years and 9 months old.
And this Septemeber 2016 marks exactly one entire year of set backs: Our frozen state of impatience continues.
I guess you could say I'm starting this post by looking on the Darth Vader side. But don't worry, I'll be looking on the bright side by the end of this post. Gotta stay positive right! (As I rock back and forth in my straight jacket inside these padded walls.)
Choking On Recent News
The best way to describe how I am currently doing is I am gasping for air while trying to think positive. But, the negatives of the whole situation are consuming my mind and I'm experiencing mini panic attacks...once again.
Yesterday Bella had blood work done. She has only been off Steroids for 1 week. Her HGb number dropped from 121-106. Her doctors cut off for restarting steroids is 100. This could possibly be the 4th time we put Bella back on steroids to avoid a Hemalytic Anemia attack.
I'm not doing ok with this. I want to say we are managing, we are, but I'm effing tired people. Dog tired. One year ago, so September 2015, we should have been coming home from Alberta Childrens Hospital. We should have been able to start Bella's Immunizations and send her to Daycare and I was supposed to return to work and we start our life as a family at home.
No...instead that month, two very large rare set backs came up in Bella's post BMT life: Discovery of the MAC bug which requires 3 antibiotics for a whole year. And Hemalytic Anemia, which in Bella's case is taking an extremely long time to get over.
Now it has been one year and the set backs are ongoing, hence my straight jacket and padded walls. I am finding it harder and harder to keep coming up with new ways to remain positive and manage this life. But I will not quit.
So here's what it looks like when my mind goes to the Darth Vader side given Bella's recent bloodwork results:
The longer Bella takes to get over Hemalytic Anemia this happens...
She continues to need the cvc Broviak in her chest for weekly blood draws. So we tape her up for every bath. It also means no child care and I must remain her stay at home mom/nurse to ensure that line in her chest is not accidentally pulled out, broken, remains clean and intact. Which means I do not get to go back to work. Which means I'm not making money. (I'm sure you can imagine that set backs that alone, entails.) It also means she remains on steroids which cause her to be immune suppressed which means the steroids don't allow her immune system to grow. Which means we HAVE to continue to screen everyone who comes in contact with Bella in a very strict manner.
It's so much fun providing friends with a list of "WTF's" in order to have a simple play date. So fun....NOT. It makes me feel so restricted, frustrated, and angry. Bella is once again robbed of playing with friends during her childhood.
This on going battle with Hem. Anemia also means that it is not safe to take Bella off the 3 antibiotics she's been on for an entire year already. Her poor little bowels have not had one chance from birth, to not have to deal with Antibiotics in her system.
It also means we have to put plans for baby #2 on hold aswell, again.
Maybe I just need to join the Dark Side to be able to enjoy this way of life...
nah, better not.
Please help me pray that this battle with Hemalytic Anemia is over soon.
Me and My Mental Health
I am so thankful I have found support this way. It's sad that I had to seek it out myself in such a state of struggle, but I did and it is helping. I am working with my ACH connections to bring awareness to this problem. Any parents in hospital with their children should not have to work tirelessly to find support this way. Short term or long term hospital families should be provided with many options on how to receive Mental Health support. Because I was not from Alberta I would of had to pay for private support for myself, or wait until I was back in the province of Saskatchewan for free Mental Health support.
So I'm a province away, living in a children's hospital...oh ya, let me get right on that. I'll just leave Bella in her hospital bed, drive accross Calgary and pay $100 for a session...sure.
Instead I leaned on my husband, family, friends, the Ronald McDonald house family until we were finally able to come home, and my doctor helped me find Mental Health support from the PTSD, trauma, and hospital life I had and still do, cope with.
Thank you to my amazing friend Chantelle who put me in contact with a woman who has started a Co-Author project and our book will be published around Christmas!
This book will involve many different authors who give advice on how they have dealt with and overcame STRESS. Can you guess what my chapter will be about?
I am so excited about being a co-author in this book and using this as a stepping stone to being able to make money, become an author of my own book and help so many other medical parents in another way. Through my chapter I will give advice and tips from my own experiences and also promote my YouTube Channel: Hospital Mom Hacks. I will also be making more coaching videos for my channel as well. Please subscribe! That would be awesome for me.
I'm not sure how much I will share on social media prior to the book release since I rather suprise more of you when the book is released. Buying the book from me will be a great financial support for me/Bella aswell. What I really hope happens from this is that I'm recognized as an excellent writer and can gain the opportunity to write & publish my own book which my current working title would be: Medical Momma Memoirs.
I am beyond excited to call myself a writer and an author.
Stay tuned!
Bella is Doing Wonderful!
That photo collage up there is of our FIRST Family Vacay. We enjoyed a beautiful week together, with family. Bella has enjoyed many firsts this summer. She has been doing wonderful with potty training! She first went number one AND number two on the potty on August 3rd! Proud mommy moment. She transitioned from drinking her very expensive formula milk to a similar tasting Vanilla So Good soy milk. Much easier on mommy's wallet. She also was a Flower Girl for one of my best friend's weddings!
You'll notice in a couple pictures she was quite upset. Bella had practiced the whole week before the wedding in our hallway. She loved throwing petals from her purple sparkly basket. Even during the wedding rehersal she impressed the wedding party with her joyful tosses, giggles and smiles. Buuut...not so much when it came to her actual time to shine. She was quite upset, but she was still so freaking cute. I think it was a tough morning for her because she didn't see me all morning (due to Maid of Honor duties) then finally it is 1:00pm and she's due for a nap, then she sees me at the front of the isle and starts to cry. So I go to help her throw petals, and my one handed toss throws a pile of petals in some poor ladies face. Lol. If anything, it was kinda funny.
Just this week Lyle and I finally converted Bella's room into a big girl room and took away the crib. With some coaching on when might be the most age appropriate time from Bella's Physio Therapist, we finally made the plunge. Because of Bella's size (Which I will address in a separate blog post) we could get away with leaving her in a crib for a while yet. But she is so much more mature now, smart and almost 3 years old. She's ready for a big girl bed and deserves the chance. We were nervous about dealing with her getting up and playing instead of napping, or not staying in bed when she should, but that didn't happen at all and we are on day 6 of this! Yay us! Bella absolutely loves her room with all the play space and stays in bed for naps and nights.
It's so cute, because one of the main reasons she needs this is so she can get a drink in the middle of the night when she wants. Now she can set her drink on her night stand and get up to drink, her self. She's still processing how to be independent and it's cute because it's like she still thinks she's in her crib. She'll get up, sit up in bed and still call for me to get her a drink, when it's right in front of her. So she sits in the middle of her bed and asks for help. Hopefully it won't take too much longer for her to understand she can reach it on her own and mommy and daddy can get a little more sleep.
Links
I was recently contacted by a local Saskatchewan newspaper called the Southwest Advance. Their Editor came accross Bella's story and asked one of their journalists to call me and write a story on Bella. I'm so thankful she contacted me and wrote a wonderful article. I was able to not only tell our story but use it to raise awareness about the need for Newborn SCID screening in Saskatchewan. And the need fore more people to join the donor registry through OneMatch and become a bone marrow donor.
Here's the link to the article:
Also! I will be running 5km this coming Sunday for Rock the House Run, an event where all the money made and pledged goes directly to the Ronald McDonald House in Calgary, Alberta, Canada. This was the RMH that was our Home away from Home for two years. I am so happy to be running for them this year instead of living in the house. Thank you to my amazing sister in law Joanna, we have a team for the run: Bella Brave team! Please click our team page link below to support the Rock the House Run for RMH.
