Rokie has been doing better but we are still in the ICU. His electrolytes have not balanced and the doctors are trying to "fine tune" his formula blend so he can get the nutrients he needs without throwing up everything every feeding.
The current challenges are his short length of small bowel, his stomach which is not used to processing foods, his poor kidneys, and other minor things.
His small bowel connected to the stomach is very short before it spills into the ostomy bag. Because the intestine is so short, it doesn't have much time to absorb the nutrients and medicines administered. The bile and stool in the ostomy bag is completely liquid and discharges/fills up too quickly. To counteract this, they prescribe more medicine.
His stomach is still re-learning to work and doesn't always react well to food and medicines administered directly to his belly. He ends up throwing up if the nurses feed him or give him medicine too fast or in too great of volume at a time. Because of this, he lacks appetite for real food. Occupational therapy really wants him to eat baby food from a jar but when he looks at it, he becomes disinterested and pushes it away. If we eat food in front of him, he gets really sad.
His kidneys are still on the mend but incredibly slowly. His creatinine levels have plateaued over the last four days or so around 0.9. A plateau is not necessarily a bad thing but it does mean continuous monitoring and a slow recovery, which is to be expected.
The doctors tell us we will always have to monitor his kidneys with the nefrologists. I am told the nefrologist will be around even when he graduates from college. During the last coupe of days, we have heard a lot of helicopters dropping off more patients. One of them was quite critical. One of the doctors said that one of the patients was trying to be as sick as Rokie which required a ton of his time. Nowhere near as sick as Rokie, but still scary. As Rokie gets better, we are learning the real thoughts of the medical staff who have cared for Rokus these past seven weeks. They have said things like "I will remember Rokus because he has shown how close someone can go to the light but return." or "Please give me a picture of your family so I can remember the sickest boy in the ICU."
I forgot to mention, the surgery department does not want to reconnect the bowels at this time because they don't believe it is necessary. There is no risk leaving Rokus with an il|iostomy bag except that his bowel is so short right now; however, there are medicines that can alleviate that problem. The surgeons prefer not to perform surgery now because they want Rokie as healthy as possible and with as few medical issues as possible. They also want to reduce the number of surgeries he ultimately needs to have. If they do surgery right away, he will need more than two operations. If they wait, they will only have two or maybe even have one more surgery way down the road. We have to wait and see.
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