Tuesday, September 28, 2010

Emotional Day

Wow it's been quite the emotional day. I got my lab results in the mail. This is just all of the numbers and the information, and she will be meeting with me thursday to discuss it. My hormone levels were bad. Some were very high and some were virtually non-existent. I don't understand exactly what it all means but I know it's not good. I'm nervous and anxious for thursday to get here to find out what happens next.

We also had Eli's cardiologist appt this morning. His doc did the ECHO again. This time Eli's number was 35. Last time it as 45. It's supposed to be 15, and 50 is huge danger zone. As of right now there is still no damage to the right side of his heart. But we obviously need that number to go down alot more. His doc is releasing him for surgery since this is something that needs done BUT he warned that anesthesia is going to be a struggle and he is unsure how well Eli will do. He will be on call and available immediately if he's needed. Eli will be retested again in 3 months and by then we HAVE to have his number down or we'll have to move on to more ideas. I hate pulmonary hypertension. humph.

Then the roughest part of the day. Finding out the Eli's motility GI office MAJORLY dropped the ball. Eli had his testing at CMH in KC the very beginning of July. They said they would call in 2 days with the results, and to get the full motility testing schedualed. 3 months later we've been calling and calling and leaving message after message and haven't heard a word from anyone. So Eli remained NPO without testing or an official diagnosis or anything. I finally called AGAIN today and before the receptionist could just rudely transfer me to another damn voicemail system I gave her an earfull. She went and personally found the nurse and transferred me straight to her. The nurses was rude as shit at 1st, and after 20 minutes on the phone of explaining she was at a loss. We hung up and she went and spent 1 1/2 hrs doing some research. She called me back letting me know that she found the problem but that the manager in charge of the hospital would have to call me back This afternoon the manager called me back and WOW. Apparently the doctor gave detailed instructions of what needed to be done next and gave him to one of the nurses. She was supposed to set up tons of testing and such and call us with it all schedualed with detailed instructions. She put the orders who knows where, got busy and forgot to do it, EVER. So now my son hasn't had a drop of anything in his mouth for months during a hugely important bit of time. As of his last swallow study his swallow is getting worse and worse from no "practice". So now Eli can't be cleared for the full motility testing until he goes thru tons more testig to make sure he's safe to have the testing. The are scrambling to cover their ass and get these tests schedualed as soon as possible. I've never been apologized to so many times. I just kept telling her over and over this is my sons life and I have to be able to trust them with my son's life. This isn't having your pants hemmed 2 inches to short, this is my son. I have never been so angry in my life. I don't know what to do. We are now sooo much farther behind and nobody is sure yet the repercussions of this major fuck up on the nurses part. It's an emotional rollercoaster right now. Sadly this is a major sub-speciality of a specialty so that means there aren't many of these doctors around. So it's not like we can just pick and choose who Eli sees.
So now we wait. They are rushing to get all of his testing schedualed.

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