Hey Baby Girl. Mama is feeling a lot better today. Talking to you yesterday really helped. I find right now I am feeling so many emotions of what we went through last year plus all of the usual grief. I remember feeling so confused and out of control. I was feeling a type of grief then too. Grief over the loss of “normal”, the loss of stability in your health. You were a very sick little girl and the reality of that was really sinking in those first few days that we were in Saskatoon.
When I sat down to write tonight’s post I decided to pull out the “journal” I kept of your journey with ITP to make sure I had my facts right. This is a little insight of our first stay and a few facts I missed yesterday. February 6 – travel to Saskatoon. February 7 – Admitted to RUH, Platelets 3000, dose of WinRho.
February 8, 2018 day 2 in RUH. We started the day with blood work. They wanted to run a bunch of different tests to get a good baseline on where you were. They look a CBC, Kidney Function, and a bunch of other stuff that I honestly don’t remember right now. It was decided that we would start you on Dexamethasone, a heavy duty steroid. We were warned about typical steroid side effects that include weight gain, appetite changes, mood changes, joint and muscle pain. The only real side effect we noticed with you was the mood changes. Oh boy, ‘Roid Rage is very real. The mood swings that you experienced were incredible and volatile. These were the only real “medical” things that we did that day.
We were able to get a hospital stroller for you and man did we walk. You were so excited for a break from that awful hospital room. We walked and walked and walked. We spent as little time as possible in your room. That afternoon Mama’s cousin Anika came to visit and she spent a couple hours walking with us and just visiting. She played grandma’s tablet with you. She played play-dough. She snuggled you. Again we were all so very happy to see a familiar face. We got to have some laughs and share some very exciting news with Anika. It really was an awesome mental break.
That afternoon we also got to see Aunty Tanya and meet baby Cecileigh. That also made Mama’s heart so happy. By that time of the afternoon you were so unsettled and ready for a break. We were lucky enough to get to take you to RMH for a few hours to have a rest and some real supper. That was such a nice break too. I remember getting to RMH and taking you up for a nap. You just wouldn’t settle. We went down to try to have supper and you were not happy. Mama was getting pretty frustrated. We were all very upset and exhausted. Grandma took you back upstairs and Mama ate. Behind the scenes Grandma had a little bit of a moment (one of very few), but this is how we learned how awesome all of the people that are at RMH really are. So many family’s going through the hardest days of their lives but they will all do anything for another family in need. A total stranger wrapped Grandma in a huge hug and they bonded over hard moments. This stranger’s nephew had just been diagnosed with brain cancer.
After a few hours of rest we had to head back to the hospital. We spend some time playing in your room and just slowly getting you ready for bed. You settled in and mama held your hand until you fell asleep. Again, Grandma offered to spend the night with you. She knew Mama needed all the rest I could get because every waking hour of the day all you wanted was Mama. I need you to know how much of a rock your Grandma was and still is for me. She puts her own grief aside to help me get through mine. She is as much a hero to me as you are. I honestly don’t know what we would have done without Grandma in those days. At the end of this day I was happy to know your Daddy and Aunty were heading down the next day to spend a couple days with us.
I miss you so much my girl. Everyday I live for you. Everything I do now is with you in mind. That is why I feel I need to write these memories down. I need to spread awareness of what this disease is. How hard and scary it is. I want to educate people that sometimes it’s more than “just ITP”. It’s sometimes more than “one treatment and it’ll be fixed”. You endured so much and I’m just proud of everything you handled in such a short period of time. You were such a trooper. I love you Baby Girl. You are my favorite!
Love and Kisses,