The day of the diagnosis, Good Samaritan Hospital contacted Children's and got us right in to confirm the diagnosis and to get a plan in place. The doctor that did the fetal echo spent almost two hours with us. He went out of his way to answer all our questions, alleviate all my fears, and calm scared parents down. That same doctor then called me (after hours) a few days later to answer any questions that came up for us.
Prior to having Jackson, there was a discussion between my OB doctors and Children's about my delivery location. My OB doctors decided Children's needed to make the call on the location. There was a slim chance that Jackson would need the balloon procedure immediately to save his life. Children's said a slim chance was enough of a chance to change the delivery location. That decision literally saved his life. He would not have made the transport from Good Sam to Children's. And they only deliver major emergency babies at Children's. As a matter of fact, Jackson will be one of about four deliveries they have in the Cath Lab there a year!
Every single person that would have a role in Jackson's delivery, my care, and his care while at Children's sat in a conference room with Ted and me and explained their role to us. I have never had a panel of people sit with me and explain how they were all there for me and my son. In addition, they had a phone tree for me in case I ended up going into labor on my own! My very own phone tree. They also rehearsed Jackson's delivery and route to the other Cath Lab for the balloon procedure, should he need it. They had dress rehearsals for us!
Once he was born, the Cardiac Intensive Care Unit went out of their way to make sure we, as parents, were comfortable and were in the know all the time. They consoled this crying momma many times. There were several times that we had a question that we asked. If they couldn't answer it, they sent someone in right away to answer our question.
My stay couldn't have been more fabulous. I had a private wing all to myself. No one else was in our hallway at all! And I had two wonderful nurses at my beck and call. For those who know me, you know that my vice is Coke Cola. I allow myself one or two a day. One of the nurses went down to the cafeteria and purchased several for me. I realize my insurance was probably billed for my coke addiction, but nonetheless, she wanted to make me comfortable.
Nurses took pity on me and kept Jackson with them a few nights in a row so I could rest and heal while in the step down unit. They volunteered that. They went out of their way to show me how to do procedures and explain things to me....again....and again...and again...
Jackson has had a few appointments there since being discharged. At each appointment, they never make me feel rushed and answered every single question and concern I have. I'm sure they have other patients that need their attention more than Jackson and his crazy mom, but they never make me feel that way.
Today, Jackson had a 4 hour appointment there. Since he had heart surgery at a very early age, they will follow him in the Neurodevelopmental Clinic. This is an appointment where Jackson saw several specialities all in one visit. They came in and out of our room like a revolving door. The purpose of this clinic is to be proactive about any delays Jackson may have as a result of his heart condition and surgery. This clinic will follow him every year until he is 18! He saw neurology, cardiology, genetics, physical therapy, social work, nutrition, developmental behavioral pediatrician, and down the road an educational specialist. These groups of people all meet together after they've seen Jackson and discuss the best plan for him. Someone then comes and relays the plan to mom and dad. They schedule all follow up appointments for me.
The heart center at Children's also has heart camps a few times a year. This is a chance for children who have heart conditions to get together at a camp setting. It's also a place for their parents to get together and get resources to help their children. The congenital heart walk (taking place in September) is through them.
Sure we've had appointments where we've waited hours to see someone, a surgery bumped, and other mishaps along the way. But it has all been in the best interest of their patients.
I realize you may be reading this and thinking, "this is standard medical care." That may be the case for some of you, but I have never been privilege to this kind of care. I find it incredible!
I will forever be Children's Hospital's biggest cheerleader!! And did I mention that it's #3 in the country for the third year in a row!!
Thank you for letting me get on my soapbox and rant for a bit :)
