Well with Danny the wheels have fallen off and we are vigorously working to see if they can be put back on or if they are truly broken. Danny was admitted to CHOW last night with extreme hypothermia, VERY low heart rate, low platelets, high PTT (blood clotting level), and very lethargic and not responsive. I was really hesitant in going down, but I knew something was up with him. His physicians were all pretty concerned so off we went. We arrived at the hospital we were able to go directly up to the intensive care floor instead of having to go through ER first. Once he was situated in the room they set up all his monitors and his heart rate was 34 and his temp was a frigid 84.9 - WOW! Now that's taking low to the extremes.
We are still in the testing stage, and lots of them. Urine & blood culture, ultra sounds of his leg to see if there are blood clots, X-rays of chest to check lungs, another EEG, and tons of labs.
This is what I know so far about 24 hrs after admission. His lungs have edema (water inside) and they have effusion (water around the outside). His plateles continue to drop and his PTT level continues to climb. His liver and some levels of his thyroid functions are evelvated. The episodes he's been having we're found to not be seizure activity but significant dysautonomic storms. The neurologist feels his hypothalamus (part of brain) isn't working properly. So it'll be tricky to figure put some of the treatment for the storms with his already low heart rate.
The question of the hour is why and how is he so sick. Is something driving all this or is each one related to each other. Danny is definitely keeping everyone busy trying to figure all this out.
I'm Totally exhausted mentally and physically so I'm going to turn in for the night. I'll keep you posted on how things are progressing
When your child knows his strengths
5 hours ago