Wow! We’ve been here 21 days now… that’s the longest I’ve ever been away from my family! It’s amazing to think about how we’ve grown and what we’ve learned in just the past three weeks. This is making us stronger as a family and as individuals. This experience is teaching us so much about how precious life really is.
I’ve been reading several books. The one I’ve been reading yesterday and today :
It’s got a lot of really great information in it… I definitely believe it’s a good read for anyone with a child who has received a cancer diagnosis. I’m currently on the section about support.
This part has really stuck with me because we’ve had a hard time with this since she was born. I’ve always been independent and been able to take care of my family. Accepting help made me feel weak although it shouldn’t have.
I always remember that we had a preacher who said to let others do things for us because we might be robbing them of a blessing if we don’t. This usually helps me accept help when I normally wouldn’t because I don’t want anyone to miss out on any blessings!
Anyways enough rambling and a little updating. Shyanne is doing so good right now. She is full of energy guy and spunk… she’s actually taking a nap right now, shhhh!!!
We are still overjoyed about her lab results from yesterday and hoping for more great news when the doctors round. I’ll be flushing her lines again in a few minutes to make sure that I’m comfortable. I’ve been practicing with my dummy set too because I know that muscle memory will help.
Well, I’ve completed my second line flush and learned a few tips. There is a grooves part that you can hold which makes it easier. You also need to spend about 15 seconds wiping the end with alcohol… I think I’ll sing ‘Itsy Bitsy Spider’ or ‘This Little Light of Mine’ to help me gauge the time. I’m sure there will be more tips and tricks to learn along the way too.
Here’s a video that explains most of the care involved:
Well lunchtime snuck up on us today as we’ve stayed pretty busy. I’ve been sorting and packing a few things so I can send some stuff home. We don’t have a discharge date yet but getting closer everyday.
Ms. B from Child Life stopped by to check on us. She said to remind her about Shyanne’s birthday when we are here next month so we can try to get something arranged for her.
We also had a caseworker stop in to verify all of our information. She is going to work on getting our DME supplies ordered. I should see one of the reps tomorrow and get a little more training.
One of the first things I said when she got her diagnosis was that I didn’t want her to spend her first birthday in the hospital. I know in the grand scheme of things that wouldn’t be the most horrible thing but I had been working on ideas for her birthday right before all of this happened.
I finished the book I was reading and the last few chapters made me cry. I just skimmed over them as they were about when your hope changes… Hoping for the best while preparing for the worst… something I don’t even want to think about right now.
We’ve been going into this with the mindset that everything is going to work out for the best. We know that God is in control and he already knows the outcome. There is nothing we can do to change the outcome.
I’ve also been practicing the line flush and completed another one this afternoon. We also tried to add some DIY bumpers on the sides of the cribs as little miss keeps banging her head. With her platelets being low all those bumps equal bruises.
I’ve asked Daddy to keep any eye out for some pool noodles. I did find a set of inflatable bumpers for around $40 on Amazon and some inflatable floated for around $4 each at Walmart if the pool noodles don’t work.
I also got to step downstairs again when a volunteer came by this afternoon. I got our usual order… using the kiosk is so much easier than standing in line and trying to talk loud enough through my mask for them to understand me. Shyanne really enjoyed her Frosty and cookie when she woke up from her nap.
We had a nice visit from Sissy this evening. Time flew by too fast and it seemed like she had to leave right after she got here. Luckily, Shyanne woke up and got to spend a few minutes with her before she left.
The nurse just came in with her lab results and I want to cry. We were hoping to surprise everyone by going home this weekend but I’m not sure that is going to happen. Her results are:
WBC 3 (down from 3.4)
HGB 8 (down from 8.3)
HCT 23 (down from 23.3)
PLT 187 (up from 144)
ANC 126 (down from 272)
I guess I better try to get some sleep because I know she’ll be up soon wanting to eat… she needs her strength to keep fighting this battle.
We love you all!