First off, today marked the last day of school, and it did not end like anything I would have ever hoped. I spent the morning packing and moving with the kids. And, since Brandt had an echocardiogram today, I had to leave early. Before I knew it, it was time to leave and I was rushing the kids out the door. I didn't even think to tell them I would miss them or give them a hug--my mind was already at the hospital--and I feel awful for that.
During my packing today, I received a call from Brandt's neurologist. He said that he would not medically clear Brandt for surgery until his MRIs were done and until we came back for results where he could examine Brandt.
I was shocked and confused--how was it safer for Brandt to have general anesthesia for 4 MRIs as compared to mild sedation for tubes? Was St. Mary's going to cancel our 2nd attempt at the MRIs? Am I ever going to get any of these appointments behind us? After I voiced my concerns to the neurologist's office, they called over to St. Mary's. St. Mary's said they would need a cardio clearance before they would touch him. I was so frustrated, but they did say that if Brandt's echocardiogram from today came back fine, then he would be good to go.
When I picked up Brandt from school, I stopped to chat with the director. Two weeks ago when I talked to her, she told me that they would begin transitioning him into the toddler room, and then next week her would be in there full time. He did a couple half days in the toddler room with good reports, but this week he hadn't been in there at all. As far as I knew of, everything was going fine. When I talked to the director today, she told me that she didn't think he was developmentally ready yet. She listed her reasons, and I totally get it--but I'm irritated with their lack of communication. She should've told me when they decided to stop the transition. I'm so worried that he won't be able to stay there for much longer--like, they will tell me they can't meet his needs or something along those lines. But, I didn't have time to really get into timelines and goals with her today.
It was onward to the hospital. So, the echocardiogram wasn't all to fun. Mind you, it was non-invassive. They basically did an ultrasound of the heart. Still, Brandt was not having it. He screamed and cried for the full 30 minutes. I tried to sing to him, rub his forehead, and offered him a blanky. The nurse downloaded an episode of Spongebob to try and calm him but that only worked for like half a minute. He was so inconsolable.
After the appointment, I called my husband, but he didn't make my day any better. He was going on and on about how the MRIs are so dangerous and how he doesn't want to do them, about how I just do whatever in the world the doctor says, about how I am putting Brnadt under unnecessary risks.
I'm at a point where I've just given up trying to get along with my husband, or see eye to eye. I've lost the patience to listen to his opinions. I'm at a point that I just don't care how he feels because I'm going to do anything and everything that my son needs. I wish that he would trust me better with Brandt's care. I might be thorough, but I'm also offering Brandt the best level of care.
I told my husband that I don't want him coming with me to anymore appointments, and I mean it. I am so tired of listening to him fight Brandt's health care. He goes to appointments on his own and doesn't even have a clue. He doesn't mean to, but he doubles my stress. Of course, he is not willing to step down. And so the roller coaster continues...
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