The pediatric retinal specialist did not think Max's eye problem would get any worse or cause him more trouble as time went on. The way his eye looked did not make him think of any subset of kids with other health problems. The only restriction he would have is that he could not be a fighter pilot. No worries there. Everyone was so nice to him in that huge grey tower of eye and ear care. Max even seemed to enjoy the adventure - that is everything except the ultrasound of his eye, which terrified me, so I didn't blame him. When the doctor said he wanted us to take him for an ultrasound, I had flashbacks to when the cardiologist listened to Max's heart and promptly said he needed an ultrasound. What was it he saw that worried him? But Brad reassured me: They do this all the time in adults. It's no big deal. And, true, the ultrasound did not reveal any surprises.
Then this morning at genetics, bile surged into the back of my throat as the doctor measured the distance between Max's eyes. All these different distances are plotted in curves showing 'normal' and abnormal' in a grandly morose textbook called Smith's Recognizable Patterns of Human Malformations. My son was being plotted on a chart to see if he was malformed in other ways we hadn't thought of yet. Super.
But those were also fine. And my surprise turned out to be that the cardiologist referred to him in his last note as having true Tetralogy of Fallot, not just a VSD and pulmonary stenosis. Quickly, I tried to reassure myself that this term shortens the amount of words it takes to explain Max's heart to someone else. Right? Its just economy of words. But if he is using that term, does he think that something else will need to be addressed with Max's heart? He did say his aorta was "generous" but my fountain of hope was the fact that he did not have enough "defects" to fit the true label of Tetralogy of Fallot.
But what if the cardiologist was merely trying to meter out the news to us in manageable bites? What if when we go back in July he will tell us yet another new thing wrong with little Max's heart? And why was my husband so confidently agreeing that, yes, our son had Tetralogy? Had I been clinging to meaningless minute details just for my own peace of mind?
The geneticist did point out one interesting fact that I had not thought of yet. Despite what all the doctors have told me, I have never been able to shake the thought that Max's congenital injury was due to some unidentified grossly negligent lapse in my in utero protection. Somehow, I let this happen to him. Even if I didn't cause it, I didn't stop it. But the doctor today again reiterated that Max's problems were not because of anything I did. For the first time, it didn't sound entirely hollow. His lip and heart were both what we call "midline defects" which means they could have been caused by the same insult. But this eye thing, that was not a midline problem. It was just on his right side. According to her, this would just be classified as a random occurrence in no way related to his other problems.
While I still need to figure out whether my hope has rightfully evaporated or not, we now start to wait for his annual cardiology appointment in July. And just in case something goes terribly wrong and he doesn't get to fulfill his dream to drive a real fire truck, I got him one. It even squirts water from a hose.
Gretchen, you did nothing wrong, you are an excellent mom, the kids and especially Max are so lucky to have you. I'm so sorry to hear all this is going on. I know your fears, I lived them with Eden, and although our ending was different with her, i remember the constant worry, sick feeling I had all the time. Genetics is a scary word. You are all in my prayers. Much love to your family.
ReplyDelete