Today, I woke up and felt good. Had a donut and some coffee.
Thank you Dunkin Donuts for being right in the hospital!
Around 10:00 AM, I started my first of two units of blood. My hemoglobin was 8.1, when it goes below 8.0, blood is given. So as they say, "we are giving it all she's got" (Star Trek reference for the fans).
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Kid Update:
For those of you on the fence about HSCT because you're concerned about how it will negatively impact your kids, this is for you.
I too was scared. I too was afraid of what my long term absence would do to them. I realize that not everyone has the same support going into this like I have. My family has literally been amazing and I know that I am blessed.
Here is what I've learned. Children are resilient. If they know they are loved and cared for, their worries are small.
I talked to my mom last night. She told me that the day before, she saw our oldest, he's 4, sitting on the floor of his room (at their house) holding our photo. She went in picked him up, sat with him and they talked. He said, "I miss mommy." He continued that he really missed me and wanted me to come home. She reminded him that she missed me too, and that it was just 7 more sleeps and then we would all be home again. This was the first time he's expressed any feelings about missing me.
A few things to note:
-he's 4, and is expressing his emotions! That's huge!!! He can name them and say how he's feeling (proud momma over here).
-difficult times, circumstances or situations don't break kids, it makes them stronger. They are able to process and handle hard situations as they grow because they've already learned that even though it's hard, it will eventually get better.
-if they know they are loved, no matter what they do or say to try press your buttons (and trust me, our oldest pushes), they are confident that what you say is true...they are loved.
As much as it breaks my heart that my absence is hurting his little heart, I'm also incredibly proud of him. His emotional growth excites me!
Our 1 year old, he's also doing great. We decided early on, that he was going to stay with my parents the entire time so that he could attach and bond with them like he does with us. He has security and familiarity in knowing that my parents will be there everyday.
I keep getting told how strong I am, but my kids are strong. They are fighters too. I'm not the only one who has beat CIDP, my entire family has!
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On with the day...
Kaitlyn went over discharge instructions with us this afternoon! No, I'm not out of lockup yet, but she said it's either tomorrow or Friday!!! SO EXCITED!!!!!
On the discharge paperwork, there is a section that says current medications. It listed everything I've been on for IVIG. The best part, next to IVIG, it said DISCONTINUE!!! That's right!
NO.
MORE.
IVIG!!!!!!!!!!!!!!!!!!!!!!
Soon after this wonderful news, my bone pain started. For those who don't know what this feels like, there are few similar pains I can relate it to.
Pain 1: back labor, like the baby is coming and you've been in labor for 12+ hours already.
Pain 2: kidney punch or injury, if you've ever fallen on your kidney, bruised your kidney etc., imagine this and then imagine someone repeatedly punching you.
Pain 3: growing pains. If ever as a child you experienced growing pains, this is that feeling times 20.
This, this is my face on bone pain:
Any questions?
The nurse was called, more pain meds were given, heating packs were put on.
Despite the horribleness of this pain, this is amazing news! It means my stem cells are in the engraftment phase. They are moving back into my bone marrow. Once this process starts, discharge is on the horizon!
While we were waiting for the pain meds to work, Jesse rubbed my neck and said, "Rachelle, you birthed two babies! I know it hurts, but you can handle this!" He was right. It hurts. And I can handle it.
Now we anticipate my blood draw tonight and what my numbers say in the morning! Numbers are how I make a living...I've never been so excited for a set of numbers in all my life!
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