The first time into the unknown

You have to understand, this blind-sided us; there was no advanced warning; there was no way to tell that this was going to happen. It was by sear luck that the doctor was on his toes and signs were shown before we went home from the hospital. Many parents go home and notice their baby turning blue, or in the worst case, their baby goes to sleep and does not wake up.

We also had to go on state insurance and were blind-sided by that. After we had spent nearly a month and a half in Phoenix Children’s Hospital we were contacted by this agency and told either we went into their CRS program or Michael would not be covered (Read do this or your baby dies. Though they were CAREFUL not to use those exact words). Gloria assured me, over and over, that nothing would change. We would have the same doctor and care we had before. Do not worry about a thing; it was merely a budgetary and Administrative matter. Little did we know, after a year or so of calling there never was, never is, never will be a woman named “Gloria” working at this organization. Imagine that. Not only did our provider change, but we were moved to St. Joseph’s cause of “politics” and we had to fight to keep the same surgeon. Understand Dr. Teodori is a gift from god and has worked a miracle on our child. Imagine yourself under a knife, your chest and heart is laying open and you wake up to find:

1. They are moving to you to a new hospital. Not one specializing in your care, but you are a big ticket item and they want your money.
2. You have all new nurses and none of them really care if you live or die, except for the paperwork involved.
3. Best party, the guy who saved your life is going to be changed in the middle of the procedure.

Feeling a bit queasy? We were and we were helpless. Any answer we got was “Who is Gloria?” “Our office would NEVER say that.” “Ah that’s a shame, but that’s the way it is” etc. Nothing helpful but a lot of, to bad, so sad, you’re stuck.

Since our son’s life was the issue here, we had no choice. When it came time for the heart catheter at St. Joseph’s, my wife packed the kids up and headed to Phoenix (A 6 hour drive from our town). My wife did write a letter to the powers that be, but you already know how much action we got on that. I am still trying to get the smoke out of my hinny. The second time was not much better, but I was there to be a complete pain in everyone’s side. Meaning I did not just sit there HOPING my son was taken care of, I bug the nurses when the bad dings happened, and I force questions to be answered. Funny how people will actually pay attention to you when you don’t leave them alone, just watch a 3 year old in action, they are masters of it. Okay so here is the short story on our 2 trips to St. Joseph’s in Phoenix Arizona:

First time, when he was getting a heart catheter, he was shoved into a single room made double by a sliding current on the general floor with children who has all type of repertory and other illnesses. You have to understand, heart baby immunities are down any way and you through on a repertory illness and it can kill them. Every Doctor, Nurse or heart care specialist I have ever read or talked to says this is a BIG no no. Yeah the kids can get ill, they will get ill, they are kids, but you DO NOT take a well heart patient and sick them in the general floor and EXPOSE them to UNNECCESSARY illnesses.

What follows is part of the letter my wife wrote to the powers that be. As the event were so traumatic she never quite got the whole adventure retold. I will fill in the blanks from t he point I came in.

I was told by Dr. Vincent’s office that Michael would be admitted to the Pediatric ICU and to report there when I arrived at the hospital. I parked on the 3rd Ave parking garage, carried baby, toddler and three bags all the way to the desk at the ICU tower. Nobody was at the desk. I asked a security guard when someone would be back. They didn’t know. I stopped a nurse that was rushing past. She informed me that admitting was downstairs and around the front of the building. So I lug everything down to the admissions desk. Nobody was at the desk. I use the courtesy phone and let the operator know that no one is at the desk. She connects me with the voicemail of the front desk manager. I leave a message and wait. After a while, I call the operator back and ask to talk to a live human. She connects me with a nurse. The nurse tells me that Michael is to be admitted to the Pediatric Floor, not the ICU. I tell her there must be a mistake because he is supposed to be in the ICU. I realized quickly that this nurse could not help me with this problem so I head up to the Pediatric Floor (don’t forget with 2 kids and luggage). I address my concern to the admitting nurses on the Pediatric Floor, which they quickly dismissed. When I asked again, the called the doctor on call to appease me. And he said Michael was stable enough to be on the floor. This is a problem for two reasons. First, Michael is not allowed to catch anything more serious then a cold. It will stress his heart. Second, Dr. Vincent’s orders said that Michael was to be admitted into the Pediatric ICU, and I tend to go along with the doctor who is doing the procedure to know what is best. I guess her orders were disregarded. There wasn’t much I could do at this point, so we went to the room.

When we got to the room, there was another patient that would be sharing the room with us. I know that the staff can not let me know any information on the roommate, and a language barrier did exist. I don’t mind sharing a room except this room was obviously intended for one patient. The nurses could barely maneuver. If there were an emergency, they would probably need to roll the crib to the lobby in order for more than 2 people to help.

Since I also had my toddler with me, I thought we might go check out the playroom I read about on line. It was closed for remolding. I asked the nurses if they had any toys and after a while the child life person dropped off a box of small toys. He played with those for a little bit but seemed to be more interested in the examination equipment. Day turned to night and I put Michael to bed and hooked up his feeding pump (which I had brought from home).

My wife in no way left the hospital. I showed up a little after this, and camped right in the boy’s room. Mind you things were so tight I had to leave the room when the nurse came in to take his temperature. They attempted to get me to leave on multiple times and finally had me escorted out. Ever feel like you are leaving someone you love to the slaughter?

The following day I played with our 2 ½ year old to allow mom to watch the little guy, who did make it through his first night. Our family showed up and took the 2 year old so we could be with Michael while he went to have monitoring devices shoved up his main arteries in his legs up to his heart. We were not allowed in the room while this “fairly” routine procedure was done, and handed a pager to go to the waiting room. We were told it would take a few hours, 3 or so, and so we settled in for the duration. Well about 1 ½ hours later the pager goes off, and we raced back to the room. No Miiichael….. So some person slid a chair at us and we sat down and waited…. And waited…. We listened to medical talked and how hard the procedure was on the “patient”. No one talked to us….. we waited….. a life time later our son was wheeled out of the operating room, whizzed past us … still we sat… did we see him breathing as he went by… a person came up to us “The Doctor is just about done, she wants to talk to you.”….. nothing….  Turned to my wife and said “Well we haven’t seen a priest yet?” …. We waited…… By now I am sure you can imagine the anxiety, the pain, the confusion, the fear that was going through us….. and still we waited…. The doctor came out with a surprised look on her face (BTW Dr. Vincent was great with us and we have no complaints in regards to her.) and asked us why were still there and not with Michael. She wanted to talk to us in the room and let us know just how good Michael had done. That everything looked good, she did a slight procedure to enlarge one of the stitched areas of his artery, etc. We didn’t have to wait, and no one, besides the Doctor, cared what we were feeling or what was going on with us. We made it back to ICU just before Michael woke up and remained with him until he was released. Which was interesting because at Phoenix Children’s I had someone walk me out to make sure everything was okay, I got through security, and common courtesy. When it came to leave (Mom was nearly unconscious and had gone with friends and family to get some rest) someone stuck there head in and said that someone would be by in a little bit to check me out. After about 3 hours, when I figure “someone” must have come by when I blinked. I picked up my son in his carrier and left.