Dear Madeline,
After such a challenging night last night, you really bounced back today in a major way. The surgical team removed your NG tube during morning rounds. This made you so happy that you threw up. Ok, you were happy after that. You sat up quite a bit today, you were interested in playing with toys, you enjoyed being in my arms, and your long-absent smile returned. It was a great morning!
With no tube going through your nose, there was also no reason to keep your arms and hands restrained. Or so we thought. With nothing left to disturb you in your face, you turned your attention to the infusaport that was implanted in your chest during your surgery on Sunday. And apparently you want that out too since it seems that you keep digging at it. Twice today we have discovered bleeding at the site. Miss Madeline, of all the things to preserve for this hospital stay, this is the most vital. We cannot let you rip this out, the port is how you will receive the medicine that will ultimately save your life. We're praying that this be preserved without further damage, which means praying that you leave it alone. I can only imagine what you might do once the chemotherapy drugs start coursing through your system after getting them via the port.
So while today seemed to be a decent day, you continue to give good ol' Mom and Dad cause for concern. To boot, the oncologists swung through and mentioned that the lab was taking another pass at the tumor to be doubly sure that the entire mass was removed during surgery and that no cancerous cells were left behind. Sheesh, we thought that question was already resolved. Maybe they saw us getting a little too relieved and wanted to wratchet up the fear and drama meter. If that was the goal, mission accomplished.
We're also worried that you are still not really eating anything. You've refused bottles so far, and here we are 6 days (almost 7) after surgery. You'll probably get some nutrition through your IV tomorrow morning to help but we really need you to get working on the feeding so that it can lead to other results, which in turn leads to medical confidence about starting you on chemo.
Lastly, we spent some beautiful family time together tonight when I brought Josie by to see you. You just lit up and smiled when you saw her, and Josie was so happy to see you, too. What a heartwarming moment! The location was certainly less than ideal, but I cannot express how much it meant to me to see our family reunited tonight. I felt hopeful and somehow reassured that this is going to be but a memory before we know it.
I know you're having a tough time getting to sleep tonight, and I'm praying for a peaceful rest of the night and another great day tomorrow. I know more challenges lay ahead for you, and for now I want to savor your good days before you endure the not-so-great ones.
Love,
Daddy
No comments:
Post a Comment