I feel like I should let people know about the 1st time we were at UCLA...Mattel Children's Hospital. We were transferred there by a tiny plane with Alex sedated in an incubator. It was sort of like a flying hospital room...but louder...and scarier. When we arrived at the hospital I lost my shit...big time! I had been in Phx. Children's with my private ICU room and lots of calm wonderful nurses. What I walked into was a nightmare. An "open ward" with nothing but curtains between the beds...so loud...and dark. The lady in the 1st bed was sort of chanting and crying...she was a woman on the edge. They put Alex in a regular hospital bed...not an isolette..or a rubbermaid as we called them...he looked so little...he was little, only 1 month old. There were people EVERYWHERE...fellows, and residents and no "real" doctors.....sucked. I was so upset that the transport crew from AZ didn't know what to do...they didn't want to leave me there. BUT, we stayed....for 4 months. The first week they tried to get Alex off the ventilator.....nope. Then they did a heart cath. where Dr. Dan (nice guy, funny as hell) came and said they wanted to operate the next day...nice notice...so they did. A right Atrial Reduction with a banded BT shunt (from 3.5 to 2.5 mm)really small. Then they did the whole vent thing again...and they pulled the tube. At 2:00 in the morning I got the call from Dr. Lee...have to re-intubate...not going to make it without the tube....are you fucking kidding me??!! So we waited and weaned the vent and this and that...THEN we had a meeting, an ugly meeting. Charlie was the muscle, my dad had the door guarded do no one could leave and I had pages and pages of questions and a tape recorder...it was on!! By the end a plan was in place...Dr. Shannon, the most brilliant cardiologist in the world, stepped up and said he would be in charge of the plan and that everyone would answer to him. No changes without him knowing.....so we tried...got him to grow...got his heart to stop beating 200 times a minute, and he was a little less blue. BUT, we still had the ventilator...and out came the TRACH fairies. All the docs and the nurses touting the wonderfulness of cutting a hole in my child's throat..."babies need their mouths" was the quote of the damn day...they would gang up on Charlie at night when I wasn't there and get him to talk to me about it. I responded with a very loud HELL NO! Finally there was an PICU attending...Dr. Balut....I love her...she is my most favorite person in the whole universe because she came up with a plan that finally worked. After a week of weaning the Vent her way...and some scary tests...he came off...out came the tube...and it has stayed out. We were discharged on March 14th...Alex felt the sun for the 1st time and I vowed I would never go back there....but I am...there is really no other choice. Other stuff happened...I can still see Dr. Shannon running down the hall on discharge day..."What room is he in...they're going to re-intubate" and other docs not thinking he would be OK if he went home. He did come home...he has not been in the hospital for any kind of emergency...tummy button for feeding but totally in/out thing. He is stronger, bigger, fatter......behind physically....vocally......but dammit he's alive and thriving and I'm trying to prepare myself to go and fight again.
