Monday morning we headed into clinic to complete the final testing for the clinical trial. We found out last week he was already eligible for the EZH2 trial at 2 weeks post op so we decided to start this one rather than waiting an additional week or more for the other one.
We had an early clinic time of 7:45am. Those of you who know me well know I'm kind of a car seat crazy lady but Monday when we arrived to the garage I took Seth out of his seat so he could ride forwards on the way down to finding a spot. He loved it and was happy looking out the window and touching Steve's head.
We met with Dr. Wright signed the consent papers and Seth had his labs drawn. We headed over to Children's for an ultrasound of the heart, EKG, and some X-rays of his wrists and knees. Afterwards we returned to the clinic to meet with the research nurse.
We were brought back to infusion room V and Seth was hooked up to for another EKG as part of the trial preparation. He didn't love this and didn't stay near as still as he had just a little bit earlier while sound asleep. 6 minutes later and 3 EKG's were done!
The charge nurse of the clinic came in and told us that Seth's calcium was 15.9! Whoa that's high and in the danger zone. She wanted to let us know they would be starting him on some fluids and Lasix in an effort to flush out his system and Dr. Wright had been paged as well. She arrived not too long afterwards and said her recommendation would be to have him admitted to get his calcium under control if we were ok with that plan. We agreed because we wanted to make sure his numbers stayed within the acceptable range to start the clinical trial on Wednesday and of course didn't want to risk it going higher and damaging his heart.
We hung around the clinic for a while waiting for a room to open up at Children's. His labs were taken again and his calcium had come down to 12.6 which was good but still in the high range.
We finally got over on the 6th floor and headed to the play room.
Once Seth was settled, his hydration had begun and the resident on service came to see us Steve and I went for dinner and afterwards I headed home.
Tuesday morning Sadie and I brought lunch into the hospital and spent the day as a family. She loved riding into the hospital in Seth's car seat and said facing backwards was comfy cozy.
Sadie loves coming to the hospital to visit brother, but also seeing the nurses, endless amount of chocolate milk, usually cookies, and playing in the playroom.
Over the course of the next few days a combination of Lasix, hyper hydration, calcitonin, and another medication were given to Seth in order to get his calcium down.
He also started the clinical trial on Wednesday. He's done well with it so far despite it being a large volume for him to take at once right now. We're thankful for his G-tube as we've heard it tastes absolutely awful and many kids complain when having to take it orally.
We had a few visitors during our stay this time which is always nice and provides a good break/distraction during any admission. Cliffy and Meagan who we didn't get pictures with but both kids enjoyed. And a few days later Gary, Leah and Charlotte stopped by to say hi after an appointment.
At this point Seth's calcium is down but only to 11.3. We will be staying the weekend to see if it comes down further and if we can get him off the fluids and Lasix to make home care a little easier. Hopefully we will be transferred up to the 9th floor soon. We've visited many times and we miss our 9N family as much as they miss Seth.
Who wouldn't love getting hugs from this little guy?
Thank you for the update despite everything be crazy for you! Your little Seth is such a cutie--the pictures of him with his big sister are so special.
ReplyDeleteThank you for sharing. Prayers to Seth and your family.we love you Seth.
ReplyDeleteAnd if course Saddie 😘
HI Sarah, I appreciate your taking the time to post updates on Seth. He stays in my prayers as well as you, Steve and Sadie do.
ReplyDeleteAmy
I lit a candle tonight and said a prayer.. big hugs to everyone
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