TONIGHT: Steve requested prayers tonight that Carsons brain can tolerate the removal of the EVD (external brain drain) and that the fluid pressures will normalize so that a shunt will not have to be placed in his brain. This is a critical event that his pressure must normalize and stabilize. Carson Update: Day 5 Between yesterdays update and this afternoon the following is the situation and and then I will post some pictures. Tuesday August 5th: He did better today. Not quite as upset. He did swallow once when prompted on the swallow test but he is not auto-swallowing. We met with oncologist, speech pathologist, PT twice, counselors, interactive therapy and his doctors so it has been a busy day. After we met with the Dr today and at least we have an idea with what will come next.....we also have every team out there working with Carson to teach him how to talk and walk and swallow its going to be a huge process and its looking like chemo and radiation for a year. ....they still dont have the Pathology Report back but met with the oncologist and thats what she is thinking Wednesday August 6th: From Steve: He did better last night. I think. Its hard to know because I wasnt here the night before. No crying. A lot of moaning. He seems to be more active in his sleep now. Pulled off the wires last night. Rubbed both of his eyes this morning and momentarily opened that left eye. Still agitated especially when the meds have worn off. They clamped his EVD (brain fluid drain) and we go in for the CT scan at noon to see if we can remove that. That will help if we can. We met with oncology yesterday and she said depending on pathology treatment will definitely start within the next 4 weeks and that it could last up to a year. Everything depends on the results of the pathology. How aggressive the treatment will be, if it will be localized to the back of the brain or the whole brain, how much chemo vs how much radiation. They decided it was okay to pull the EVD. So we have been able to hold him. It has been nice and he also walked really well for a good distance. I think getting this EVD out will help. (EVD is the drain on the back of his head). They took the drain out from his head, and the IV from his ankle. He stills moans but they think it is due to frustration more than pain. He actually sort of played trouble with his parents by moving the pegs around the game board. Thats huge! From Monday to today there are a lot of improvements but still no talking, swallowing on his own, and he is still keeping the eyes shut. . Devin and Kyle were there helping out where they could. They took Carson on a walk to gym. He even reached out to pet the dog they had in there. He did a good job walking today. Steps were very deliberate. Overall, it has been a good 30 hrs. Again, I have received several calls and expressions of concern. Please continue those fantastic payers of support. We sincerely appreciate all of your kindness. Love you all.
Posted on: Thu, 07 Aug 2014 02:39:14 +0000
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