The fact that I am a mother of a heart child has once again smacked me in the face. Normally I can pretty much pretend that I have a fairly normal child because Evan is so active and a heart defect is not something that you can see. Recently after a long marathon of specialist doctor visits when I was looking forward to things with him quieting down I got some news I had hoped not to hear.
Evan had two tiny flaps instead of an actual wall between the two bottom chambers of his heart. The top flap is causing a bit of an interruption in the blood that is flowing out of his heart. This is something that we knew could happen going into his last surgery but the surgeon looked for it and it was not appearing. About a week later after Evan had his stroke the partial interruption was showing up in his echo. This was not seen as too big of a deal as long as the interruption was not getting worse.
Evan was being fairly closely monitored to make sure that things were fine in this respect so I had kind of thought he was home free. I was deluding myself a bit I think. At his cardiology check up the doctor told me that surgery was going to have to be done since the interruption was not getting any better. It would have to be done either before the final corrective surgery or during the final corrective surgery. This is because he will have even less blood flow to his heart further changing it's shape and the interruption would get worse.
I know that the surgeon likes to only do the final corrective surgery when he does it because it is too hard on the kids to start adding other procedures. He is fundamentally altering their circulation system and that can be hard on the body to get used to causing many complications and even death. I am very much in agreement with this policy because I have "met" too many parents of kids through the internet that have lost children in this final stage.
We will be going down to the city for a big work up in January and we will learn more about the timing of this surgery. Part of the reason this is hitting me so hard is because I had tried to plan my pregnancy around Evan's surgery. I did not want to have a young infant nursing while I was trying to take care of my first born in the hospital. Evan has to have a parent there at all times, that is just how I am. I do not want to leave him alone in the hospital because I know that while they try and give him the best care that they can Evan needs an advocate that can fight for all the things that he needs and is not distracted by the needs of other patients.
Control freak that I am I had decided that this caretaker had to be me and I was starting to get very stressed out about trying to care for two children. I am the one that coordinates Evan's care because I am the one that goes to all the appointments and takes care of him for the majority of the day, that is my job. My husband is also not a hospital kind of guy. He is very much a doer and there is not much to do at a hospital, you are more of a watcher and asker. He is willing though to put aside his distase of hospitals and take over my task. That is what makes him a great husband and help meet. When I can't do something he will take over and fill in for my weaknesses.
I plan on being close by though because I just can't give up THAT much control. I need to be there with my special little guy and help him as much as I can while also caring for his brother. There is just no true replacement for mom even though dad will be there too.