Day 30 - A Sheikra of a Day
Friday, January 29th
(Busch Gardens Sheikra - Climb 200 feet to the edge of a 90-degree drop that inches you mercilessly over the edge—and stops. Then surrender to speed as you dive straight down into a 70 mph roller coaster whirlwind with an Immelmann loop, a second dive into an underground tunnel and a splashdown finale that drenches SheiKra fans waiting to catch their own piece of the fun.)
Morning: James had quite the eventful night. Before getting into the details, it’s important to note that James is a fighter, he’s strong, and he’s getting the best care that he can receive. I’ve witnessed over the past few weeks many different hospital staff members work on James and the systems of communication, overall care, and gentle approach for James and us has been excellent. Every morning, we get an update from the doctor. Every stat is updated to our portal almost instantly. Every question we ask gets answered. Every time we want touch time it’s granted. We are truly blessed to be in a situation where we are able to receive great care for our baby James.
As for his update: Last night at 11pm we got a phone call from the on-call doctor letting us know that James is showing some concerns, including his unusual sleepiness when he’s usually feisty, his high settings on the oscillator, decrease in platelets, decrease in red blood cells, and the blood gas levels were concerning. Due to these observations, James had a blood transfusion, he’s put on two antibiotics, he’s back on an IV, he’s no longer getting feeds (for at least 24 hours), he had a blood culture done, a urine culture done, and there’s a possible chance at James getting put on a different oscillator that’s even more advanced and can target specific areas of his lungs more than the one he’s currently on (this would be due to the chronic lung disease that he’s facing and might be needed to help James develop at the pace he needs to).
Some other observations: white blood cells looked good, chest X-ray was good, belly X-ray was good, he’s tolerating his feeds, he’s having bowel movements, and he’s putting on weight. For now, his FIO2 is at 55%, amplitude 30, and pressure at 17.7.
James will get another X-ray around 6pm and will be getting his blood gas done every few hours. The most recent blood gas came back good, which is already progress.
We know this is a roller coaster that we are on with lots of ups and downs. We know that the downs make the ups that much more meaningful. We also know that the journey to the ups is even more meaningful than solely remaining at the up. We are embracing the process as best as we can. The process is filled with lessons that will serve us at a later time even more than in this moment.
We are learning.📖
We are loving our baby boy.👶
We love each other❤️(mom and dad make a great team #partnership). 🤝
We would not be faced with anything that we are unable to respond to. 💪
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