You're all not going to believe this!

[Guest guest]

Ok, I am still fuming over this but feel I am calm enough to write about it. Miranda was scheduled for a J-tube placement yesterday ( Monday). We got there when we were supposed to and they took her an hour late, which is fine, I understand they get delayed. So anyway, they get her to a bed and they start all the pre-surgical stuff.

So the anesthesiologist comes to talk to us. He is obviously an arrogant guy. He asks what Miranda's underlying problem is. I told him she has a Mitochondrial disorder. He looks at me and says, do you know what one? I tell him she has complex IV, Cytochrome Oxidase Deficiency. So then he says, Well, I have seen a lot of patients with Mito disorders and they are much worse off then Miranda. ( ok, this is the first time he has seen Miranda and knows NOTHING about her) So then I expressed my concerns about Malignant Hyperthermia and Mito disorders. He asks why am I concerned about that? I told him I was told by Dr Cohen there should be precautions taken because of the connection with Mito. He says there is no such connection and the Dr who told me that only knew half the information!! So then basically, to humor me he says he will avoid the medications that are associated. This guy was such a jerk!

So then to make matters even more fun ( sarcasm) Miranda's Ped has told us to have them use Latex precautions due to some very recent reactions she has had when exposed. ( hives all over) So the surgeon meets with us and says, Whats this, She is now latex allergic?? So I tell him the story. He say, Well, I need to talk to the Ped before I do anything, I was planning on placing a latex based tube. SO he talks to the Dr and comes back an says he needs to go see if he has a tube to use, otherwise, we have to reschedule this. (she already has her mediport accessed and they have the IV running and has had some mild sedation) So the Surgeon comes back and says he does NOT have a tube to put in, We have to order one and reschedule. So home we go.

I am supposed to call tomorrow to find out what's going on and the surgeon said we can hopefully have the surgery done Monday or Tuesday of next week.

This has been such a stressful week and its only Tuseday!!

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