I work full time and Simon had two doctor's appointments last week, and I helped lead a parent's hour at the hospital and Joseph has prom coming up so I had to go tux renting with him. Needless to say things have been busy.
So the new scoop on Simon, sort of. His upper GI showed a distended esophagus, hiatal hernia (that is new) and reflux. The evidence of the GI bleed during his surgery and the distention suggests that he has had long-term reflux, though 3 years ago it was minimal. He has a malrotated colon but the GI did not think it was showing signs of symptoms so we're not worrying about that unless the surgeon said something. The surgeon ended up not being in town so she couldn't have him pop in like she had hoped. So we were waiting for his input and then would schedule the scope and biopsy and do the PH probe.
So I get a message from the surgeon's nurse that said he did not need to see Simon YET. So, like the patient person I am, decided to wait to hear from Dr. O'Gorman to tell me what he said and when to schedule the other tests. No phone call. Not like her. So I called today and left a message. She is in clinic the last couple of days but I'm anxious to know whats going on.
Two things she mentioned was for children like Simon are usually considered with these symptoms; a nissen or a GJ tube. We didn't make a decision or discuss it more because until the other tests are done we don't know exactly what we're dealing with. But I did start my GJ research because I naturally thought no surgery, we'll just do a GJ, problem solved. Well, there are things that make me uneasy about the GJ and now I'm not sure. So I've decided to stand back, wait for the tests to tell us what they need to, what they plan to do or consider and then so some real praying and soul searching for the best solution. Quiet meditation is how Simon and I communicate best so I wait for him to send me the mommy this is best vibe and the Dave to give his opinion.
I have to honestly say, I wish Simon was done with "issues" it really seemed like a honeymoon period for awhile. But this proverbial slap in the face of reality has kind of ticked me off. Simon rarely shows strong evidence or symptoms of illness for some reason. His fevers don't get extremely high, even with RSV and pneumonia simultaneously. His reflux he seemed to have a handle on. I'd see him swallow hard sometimes and get tense but it wasn't constant vomiting like when he was younger or even spit up problems or the old aspiration type holding breath and panicked look he used to get. It was an innocent general question about adenoids that started all this and it feels like a return to when he was born; "we'll fix this and then you'll just go on like normal." It wasn't true then and isn't proving to be true now. Its exhausting not quite feeling like you know what's coming next.
If not for his smile, his giggles, his quiet moments of reassuring wisdom connecting with my spirit, I'd be a bumbling idiot by now. Shut up Dave! LOL If not for the support of my husband and partnership as a family with Joseph and Hayden, so helpful and such good big brothers who do nothing but treat Simon as a brother and with love, I would be lost. Without my shaky faith, but a Heavenly Father that in the midst of my fits lets me know I'm never alone, I would fall.
I love my family. I am thankful for them. But the worrier in me and the need to know what's coming so I can run through at least 50 scenarios to make a decision does not like these surprises they like to throw at me. I'm sure its a character builder, but I'm enough of a character!
