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November 29, 2018
Big news today. Maxley’s cardiologist called and they actually want to wait to to his surgery. He met with all 3 pediatric surgeons and they all reviewed his echos and agree they should wait. It’s a good thing overall. I had mentally prepared to be going in soon so that part is tough but waiting until he is bigger is a good thing. Surgery is now scheduled for January 28, 2 months from yesterday. The only downside is now we have 2 months without care for Maxley. Pam is going home on Saturday to spend some time at home before coming back for another 4-6 weeks. Initially she would have come back at the beginning of January after surgery but now she won’t come back until mid March.
Maxley didn’t sleep at all last night because he was off of his reflux meds for 2 days. His prescription ran out and it took his pediatrician and the pharmacy 2 days to get it together and get me the prescription. He was up all night coughing and gagging. He slept in maybe 40 minute chunks most the night I think. It’s hard to keep track of because he is up so often you lose track of when and how often. You think you’ll remember during the night but come morning the whole night is a blur. All I know is I was up 15 times or so and didn’t sleep until Pam came and took him out of my room at 6:30. Then I got to sleep for a couple hours before heading into work late.
I got a call for Scott today on my cell phone. My heart dropped to my feet. It was someone calling about his medical bills which I haven’t dealt with yet. I had to tell the lady he died and I was his wife and I was trying to deal with it all and then hung up. Then I just stared for a while. It’s not the first call I got for him and it won’t be the last.
My heart is broken. I miss him so completely. I feel like a quarter of a person walking around. Nobody can tell I’m missing most of me. I look so normal on the outside but on the inside am hollow.