Ok, so I didn't update that we were in Pittsburgh or about anything that happened this week...really I was going to and actually tried to a night or so but just decided not to. It was a long week, exhausting, frustrating and overwhelming on a lot of aspects.
The hospital was HUGE! The city was way too crowded, too confusing and really not for me, I will stick with my small town (I consider Greensboro small). He got admitted on Monday and not much excitement for the day, just a lot of infomation taking and going over his story again to several dr's.
Tuesday he had an upper GI with contrast through his J tube, several xrays to watch it go down and some basic blood work. He did fine, they said the xray showed no dilation and so the GI docs were convinced he did not have pseudo obstruction. We also saw Neurology, the resident did the initial consult and took all the infomation then the whole team came back with the Dr for his opinion. He told us with Zach's history, the progression of his problems, the number of problems, and the motility tests and all the symptoms...he highly suspected some sort of Mitochondrial disorder :( We already had this in the back of our minds but still....
He said all of his symptoms fit with this diagnosis and he wants Zach to get a brain MRI and his muscle biopsy. He also ordered lots of bloodwork.
Wednesday, they tried to do an upper GI with contrast through his G tube but he was still full of contrast so they couldn't. We met with the transplant surgeon who thinks he indeed has pseudo obstruction, says it is intermittent and says 9 out of 10 times you don't see it on xray. But based off his motility study and the actual pseudo obstruction episode he had a month ago.....he says he has it. He actually laughed at the fact that the GI thought the contrast would be gone. The down side is he said that Zach can't be listed for transplant (although he needs one or will need one) without knowing what kind of mitochondrial disorder he has. He explained that he likes to give benefits for a transplant and right now he doesn't have any for Zach. He can't say doing a transplant would allow Zach to live any longer than he would without one.
So that means....depending on how progressive his Mitochondrial disorder is, it isn't worth doing a transplant right now.
On Thursday, they tried again to do the upper GI and still couldn't due to him not moving the contrast out of his intestines...no big surprise really. So we got to leave that afternoon and drove home. We got home around 11 pm and got to sleep in our bed..that is me and Zach sleep in our bed and Luke and daddy sleep in their bed.
I know, not the traditional way but right now until daddy finishes making Zach's new bed that will fit right beside ours, that is the way we sleep.
So for the acomplishments of the week in Pittsburgh....
He will start PT and OT therapies for several reasons. He has a new diagnosis of SPD which is sensory processing disorder and needs OT to help with that. And he is also losing coordination in his legs, probably mito progression so he will get PT for that.
He will get a brian mri and muscle biopsy to help determine the type of mito.
He is diagnosed with CIPO so at least we are all in agreeance as to the issue of the gut.
He does qualify for a transplant..if needed and able to get later down the road but for now he still has all of his central line spots open (which is a huge sigh of relief) so it is not dier for transplant right now. Which is good too, since success rates for transplant are only 85 % at 5 years and I am not ready for those odds.
His pediatrician and GI dr here are setting up appts with neuro, a mito dr at UNC, the biopsy, the mri and the therapies. And we still have a follow up with immunology. I did find out today that his microarray came back normal which determines he does not have a problem with his chromosomes so it is pointing more to mito.
So now we wait for results and more tests...not a lot of good answers but at this point we just want to know.