Throw a fit, give thanks and write.

We got discharged from the hospital last night but not before a small fit was thrown… by me. From a HemOnc perspective, Trip reacted as expected to the Methotrexate and his levels dropped to .06 – safe enough to be released. We were all so happy, so we packed up and waited for the discharge orders. Then the oncology fellow waltzes in and says, “Endocrine won’t release him until he’s on his home DDAVP routine.” HUH? I explain that his actual endocrinologist that was on call over the weekend and I worked out the details of how to manipulate his DDAVP dosage and that she has a lot of trust with my knowledge of his DI. I was told that doesn’t matter and that the doctor on call now is calling the shots. “YOU MEAN THE DOCTOR THAT DIDN’T EVEN STOP BY TO SEE HIM TODAY??!?!?!” That was the beginning of the fit.

I demanded to see the doctor for a full explanation of their reasoning and the goal they want Trip to achieve before going home. I explained my understanding and agreement with his endocrinologist’s perspective. This is the problem with hospital stays and having DI. DI is extremely subjective and every doctor has a different method of dealing with it. When Trip is in the hospital for any length of time, we might see 3 different endocrinologists with 3 different opinions (basically the reason we were in the hospital for weeks last year).

Not sure if the doctor heard about my fit and got scared or was already at home sipping on a martini, but he/she never showed up. About an hour later, the nurse came in and said we were getting released.

Lesson #1 for the day: Throw a fit. ☺ Actually, the lesson is to stand up for what I know is best for my son. My beautiful, intelligent, RN cousin told me she always encourages her nurses to go with the mom’s intuition because they know their child better than anyone. Good, solid advice. Trip’s endocrinologist knows everything we’ve been through and knows how I treat his DI, and she also encourages me to question everything. I’m happy I did.

When we were leaving the hospital Trip literally ran out with his mask on. We got looks like “that kid is on chemo?” and I loved them because to me it meant he was feeling good. When we got home, he ran around the island in the kitchen yelling, “I’m free! I’m free! I’m free!” and giggling. It was wonderful to see. Later the three of us got in the bed and wrestled I gave thanks for those moments… our little family was under one roof enjoying each other and my son felt good and happy! Lesson #2 for the day: Give thanks constantly for every little thing. Gratitude makes what I have enough and brings me joy.

Lesson #3 for the day: Write. The writing thus far has been so therapeutic and has brought people to me that encourage me. It has given me much perspective on the day-to-day events and a way to process the feelings. I didn’t realize how much better I would feel in doing it and how many people are out there cheering us on. THANK YOU TO ALL. The encouraging words make all of this a little more bearable.