And so the Nightmare Continues

I spent a lot of time today trying to figure out how to write this post. I am beginning to feel like all I can share is “doom and gloom”. I’ve turned into “Negative Nelly” and it hurts that I haven’t been able to post much good news lately but there just hasn’t been much of it to post.

We had our follow-up appointment yesterday with the general surgeon we have used in the past. I have to admit that this guy has never been Max’s biggest fan, from birth it has been as if he isn’t happy if he’s not giving us some horrific diagnosis/prognosis for Max. That first year when we were inpatient, although it was his partner that was Max’s primary care provider, this doctor insisted on testing Max for several horrendous disorders. Often not once, not twice, but three times. Each time he almost seemed disappointed when the test results came back “negative”. He was part of the team of doctors that used to tell us, “It’s just Max” because they didn’t really know what Max had and they didn’t want to admit their own medical ignorance. Anyway some things never change…..

After a ten second conversation with me and without even acknowledging Max’s presence in the room, he ran off to read the CAT scan that had been done while Max was in the hospital last week. It seemed as if the exam room door had barely shut when the medical student was sent to summon me. There was the doctor in front of a computer screen shaking his head, “Do you know what this is?” he nearly screamed at me. Before I could answer he said, “This is pseudo-obstruction of his bowels and it’s a miracle his intestines even work. Although it’s only a matter of time before they don’t work anymore and he’ll be completely dependent on IV nutrition.” He continued abruptly, “...and there’s nothing we can do for this…enjoy this time because it’s only going to get worse.” All of this without taking a breath or noticing that I was about to faint, he probably didn’t care because he was too focused on delivering another horrific diagnosis – after all it’s been nine years and he needed to get another one in.

I am rarely, if ever speechless but I have to tell you this time I was. Max stood beside me and had heard everything so I was forcing myself to hold it together but I just kept imaging Max no longer being able to eat and it took everything I had in me to not scream or rage at this doctor. In the end it didn’t really matter, he was already out of the room with his entourage complaining to them about how long this dictation would take!
Today is a new day and I’ve decided that this is just another “fire drill” sparked by one man’s desire to see Max as nothing more than a really bad train wreck. Oddly enough I am doing better than Michele is, I usually rely on him to hold me up – this time we’ve switched roles. I am convinced that if Max had always had this problem, as this surgeon insists he knew all along (strange this is the first time I’ve heard it from his mouth…), some other doctor with more skill and more knowledge would have already picked up on it. I’ll start sending the discs out to Hopkins and wait to see what they say before I truly panic. That is I’ll send them the disc if I can EVER get PCH to produce one!

At this point I am praying for a respite because I am seriously concerned about us and our stress level. We need a bit of peace and tranquility, at least through the end of the year. 2011, here we come! Certainly it has to get better!