November 19, 2013
Today I found out Rokie had a pic line removed from his left leg and ... he removed his urinary catheter all by himself! Yeah Rokie! I love that he removed it and the doctor said he doesn't really need it anyway. Steph and G. Booty keep telling me cool things about Rokie. He tries to sing along with Steph, he is more focused, and can interact more.
November 18, 2013
Rokie's creatinine levels plateaued today. If they do not increase over the next few days, it is highly likely he won't need more dialysis.
November 17, 2013
Rokie is aware and more alert of what is going on around him. G. Booty is making him laugh and smile. His throat hurts him so he doesn't make a lot of noise but he does make noise when he cries or something hurts him. Right now, Rokie is going through withdrawals and is not 100% coherent, his body twitches, and he gets nausea aches. It is sad to see our boy suffering from drug dependence so young.
I spoke with one of the doctors today, and he said our concerns are (in order of importance) - (1) kidneys, (2) Bowels, (3) Drug Dependence, and (4) Respiratory issues. The lungs seem to be doing well and require less and less support. The kidneys are still very sick but the Kreatinin levels are only slightly increasing. We hope they stabilize so we can start removing lines and catheters.
Rokie has been signing for food by continuously sticking his fingers to his mouth. Until he receives occupational therapy to coordinate his "swallowing" he must continue with a feeding tube rather than eating orally.
This week will be a major time to make big decisions towards Rokie's improvements.
November 16, 2013
Rokie is looking much better all the time. He is off the machines and just hooked to 2 PIC lines, an artery line, the CRRT catheter in his neck, and the urinary catheter. He hates all of it and really works hard at removing everything. I love that he reacts as a normal toddler would. It makes me feel like he can recover to a normal status and be running around again.
Rokie looks like he is confused and is not sure why so many "strangers" act like they know him so well and are happy he is looking healthier. I assume he wonders why he is in a hospital too. Poor guy. The only person who can make him smile or laugh is Grandma Boo. His throat hurts and he can't make much sound. The only sound he made was when he was crying when the nurses changed his dressing around the catheters. His skin is so sensitive when they remove his bandages. I help him sit up and I think he enjoys it. His muscles are very weak so we have to hold him but it is really good for him.
Talking with the doctors, we are monitoring his Kreatinin levels, his BUN, and other levels to make sure he does not need more dialysis. If he does, then we have to transfer him to another hospital that does hemo-dialysis. One of the doctors feels like it is a low possibility. We are still waiting day-by-day and hour-by-hour.
November 15, 2013
Today I held Rokie for the first time in over four weeks. He seems confused and aggravated about all these "new" people he doesn't know but they all seem to know him. He remembered how to use the iPhone. He pushed the main button and scrolled through pictures even though he lacks a lot of strength and fine motor skills. He is such a cutie and I really hate to see him frustrated with all the lines, tubes, tape, and everything else bugging him.
The doctors removed Rokie from the ventilator today and also moved him to a different bed where he can begin rehab with his diet and everything else. They also removed the oldest PIC line so he is doing quite well. He hates the lines on him and keeps trying to rip them out.
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