October 5, 2018

Happy Thanksgiving weekend everyone!
Killian graduated into his own room this week. We now have our own bathroom and a small “bed” for me to sleep in. It’s loud in there and not comfortable by any means, so I’m going to have to find a balance with sleeping there sometimes and not others. I’ve learned through talking to other transplant parents that my health, both mentally and physically, is my best weapon right now. If I get burnt out or worn out, I’m not in a good state to be making medical decisions. And if I get sick, I can’t even go to the hospital. So sleep is important. That being said, it’s really hard to leave your baby in someone else’s hands. I’m back at Ronald McDonald house with the boys tonight and Dean is sleeping at the hospital.

Killian had a good day, my mom came to visit. So did my Aunt Bonnie and Uncle Phil. So lots of love today.

Killian had a Pic line put in his first week of life. A pic line is pretty much a semi permanent IV that goes in his arm, directly into his heart. He needs this in to ensure that his PGs (the drug that’s keeping him alive) is constantly running through his heart. This medication only has a shelf life of about 6 minuets, so losing a regular IV that would carry that isn’t ideal. Tiny baby veins are hard to find. I noticed yesterday that there was some blood running back into his pic, so today they had to flush that out. If the blood keeps running into it, there can be a worry that there’s some clotting happening which would prevent the PGs from properly doing its job. So that’s something we need to keep an eye on.

These PGs are what are keeping him alive, but there’s some nasty side effects. One being bone pain. Killian was pretty fussy today, which is out of the ordinary for him, so they may need to start him on Tylenol. They will manage the pain with Tylenol and Advil for as long as possible, and eventually move onto morphine when the pain gets worse. So let’s hope that the Tylenol gives him some relief if there is pain.

I hope you all have an excellent thanksgiving. I’m so thankful for my family, friends, my 4 boys, and all the thoughts and support we’ve gotten through this. My sister sent me this quote today and it’s been running through my brain all day.
Night all.

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