I know it's been radio silence for a minute on heart surgery front. The only news as of late has been me calling people, leaving angry messages, no one calling me back, rinse repeat for the past two weeks. While I grow increasingly frustrated with the number of hoops I'm required to jump through just to speak to a physician, Zane continues to grow increasingly tired overall. After weeks of the cardiologist's nurse telling me that she was leaving him message to call me back, every day, the truth comes out. His cardiologist was on a three week vacation starting on the day he had his MRI. He got back on Monday and when he hadn't called me by Tuesday afternoon I had started planning for surgery out of state. He finally called Tuesday night at six thirty.
The conversation wasn't ground breaking. I had read the MRI report and knew that it was basically the same as his MRI in August, which wasn't good. More importantly than any scan or measurement a physicians could take at this point, is the fact that the patient is getting worse. First rule of medicine look at the patient not the monitor and the patient is not doing well. The physician offered to wait until summer time to have the repair done since he is stable, all be it exhausted. My view, which I expressed to the physician, is that denial and procrastination isn't going to make anything better. He is getting more tired every week and more angry/difficult to deal with everyday. Our family is currently in a hellish holding pattern. The only way this is going to end is Zane having his valve replaced and hopefully feeling better which will lead to better behavior and everyone being happy once again. So the doctor sent a note to the surgery office so they can review all his studies and call us within a week or so to pick a surgery date.
With this exhaustion sadly has come a lot of anger and a lot of behavioral issues that I briefly mentioned before. It's not pretty, it's not fair, and trying to navigate through this particular part of our heart journey may be harder than watching him get sicker and more tired. All I want to ever do it hold him, cuddle him, play with him, hear him laugh, watch him play, and see him happy. That's it! I want to take away his pain, magically give him energy, and see him happy, it's just that simple and just that hard. There is no way to give him energy, no way to take away his pain or his frustration so we are left with a kid who is angry at the world. He doesn't know how to deal with all the crazy emotions and fears he's having right now so all the emotions are showing up as anger. He is fine as long as he can be doing exactly what he wants to be doing. The moment he has to be a normal human and do chores or homework or anything he doesn't want to do he's angry. It's the worst, it's sad, it's embarrassing at times, and it's exhausting. So I spend most of my time as the bad guy instead of doing all the wonderful things I would like to do with him prior to his impending surgery.
So in short no real updates, still waiting on a surgery date. I'm doing things like talking to the school to make sure he's ok to miss the last few weeks of school if he needs to, buying sweat pants to wear at the hospital, and not sleeping at night. Zane is going to a therapist that specializes in helping children prepare for big upcoming medical procedures/diagnoses. We can't afford a lot of sessions since our insurance doesn't cover it, but hopefully they can give him so tools that will help him with all that is ahead in a few visits. I'll have him speak to a child life specialist soon to prep him on what all to expect in the hospital, but waiting for a date before we do that. So nothing really to do right now expect stress, and wait, and worry. Pray that my sweet loving, happy boy returns to us soon.
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