It appears Rambo was not picking up the vibe I was giving him. I threw it out on the porch to see if the cat would lick it up - and it didn't. His violent hatred was not effective in the way I was hoping.
Warning: The following statements may not be acceptable to all viewers. It is the opinion of myself and does not necessarily represent the views of anyone else. If you have someone now or have ever had a child at Mt. Washington or if you know someone who works there please consult your doctor before reading.
On Friday we were moved to Mt. Washington. This was a good day because it meant Rambo was doing well. He was there to wean off his medicine and then go home. Unfortunately Rambo didn't see fit to have it work that way. And I must say, that I'm not terribly upset we are no longer there. Sunday night we were transferred and admitted back to JHH.
I have never been more relieved to see someone from Hopkins as I was on Sunday. I had more confidence in the three people from JHH and an ambulance than I did in the entire facility of Mt. Washington. In fact, the doctor from JHH remembered him. She looked at him and me and his paperwork and said, "Oh! This is Rambo!"
Our stay at the Mount was not exactly the kind I had hoped for. I am choosing not to go into details because I don't want to knock the entire place and I'm sure (maybe) there are people there who know what they are doing, but I didn't meet them. From nurses who kept putting me off to doctors who didn't listen to what I was saying, I encountered all type of unprofessional, unkind behavior. And lo and behold, could it be, I actually know what I'm talking about. Who would have thought??? It's almost like I know my son. Weird, I know.
I got a call from his nurse on Sunday saying that he was very agitated, running a fever, his appearance wasn't good so they were going to run some labs. This is after I told them on Saturday that something was up because he wasn't looking normal and the doctor told me quote "He looks fine now." Yeah, I wasn't happy. Anyway, long story short, he gets transfered back to Hopkins that night. We were admitted and are still here waiting to find out what's going on. No one is really sure. His blood pressure has been low today and he has been de-sating (low oxygen). They did find ecoli in his trach again so he is on antibiotics. He will intermittently turn a very dark red/purple mottled color from head to toe. Literally, it's all down his fingers and toes and on his cheeks, head, etc. They did a chest xray and everything looks fine. They also did an echo and it was the best one he has ever had. Yay! It's not his heart! The God-fix is still good :) They are running more labs to see if they can figure it out.
We are not back in the NICU or PICU. We are on the 6th floor (intermediate care). I think maybe he's trying to hit every floor in the hospital. I'm not okay with that goal.
So here we are again. Little man does not like to play by the rules. At least not anyone else's rules. I think he makes his own up as he goes.