October 7, 2018

Hey all. Hope you’re all enjoying your thanksgiving dinners!! Killian and I are snuggled up enjoying our evening.

Big day in a funny way. I was able to take Killian for his first “walk” today. We can’t leave the floor, and I have to pull his IV pole with us, but either way it was something new. Because he’s doing fairly well right now, and I’ve been told what things to look for, I don’t need a nurse with me to walk the halls which is nice. We will probably pick up a stroller he can lay in so that I can lap the halls. It’s so strange to not be able to take your child outside, and I struggle with that a lot. It’s hard to imagine never experiencing fresh air and sun on your face. So I hope that the day comes that he can experience that.

We have a busy week coming up. His picc line (the IV that is semi permanently placed in his arm) has been backing up with some blood, so we’ll probably get an X-ray to make sure that the placement is still correct. If it is, they will most likely increase the Heparin that runs through it with his PGs. They can’t run the risk of any clotting happening, because it could slow or stop the PGs from getting to the heart, which is not an option for him.

Next Friday Killian is supposed to be getting a Gtube put in. Which is a feeding tube that goes directly into his stomach. A little freaky. I’ll explain more about that one day…in my spare time lol.

So today I’m thankful that my boys are back home enjoying their holiday with our family, dinner today and another tomorrow.
I’m thankful for Dean being able to take on full time daddy duty without batting an eyelash.
And I’m thankful for being able to take walks, gives baths, and snuggle up with my little Bean.

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