December 02, 2004- Tampa Trip Day Two

Got up and did the same routine as the day before after being up all night with a 2 year old who was running a 102 degree fever. One of his mystery fevers again of course. The fever finally broke around 2am and he slept okay after that. I was awake trying to figure out how to do everything, feeling more and more like I should just cancel all this, and having "bone" pain.

Vin called a few times (after 8am) over a fiasco with Big B at school which stressed me even more. Seems my oldest child was trying to raise the bus window and dislocated his thumb (come to find out it was only "jammed" a little and the nurse wouldn't listen to him).

After breakfast Nancy and Lil Man dropped me off again at Moffitt. Check in was easy this time and I got my pager and sat down to wait. TWO AND A HALF HOURS LATER the pager finally went off and I went back to be weighed, BP taken (103/71), and wait for the doctor. Let me just say that while I was waiting that two and a half hours I had a lady teach me how to do a crochet stitch or two. That’s how bad it was.

About 15 minutes after I sat in the room a med student/resident came in to get my history again. I’m glad that I’m such an oddity that I make a great learning tool and all but after making me wait over two hours do NOT screw with me! I was in no mood to play guinea pig anymore. Put up with him (he really WAS a nice kid just wrong day was all) and then waited to see the surgeon. Dr BC finally came in and started talking to me.

This is where everything changed and my head started to swim. Basically he said he wanted me to understand just how serious and complicated this surgery was so I wouldn’t have any surprises afterwards. He said we are going to remove both my adrenal glands, burn out all the tumors in the liver, and remove the tumor in the small intestine all in one surgery because the more they go in the higher the risk to me is.

For 10 days prior to the surgery I will take a medication that basically shuts down my adrenal glands. If I roll out of bed like a normal person- I will faint. If I get up too fast out of a chair- I will faint. If I bend over and come up too fast- I will faint. Then a day or two before the surgery they will start injecting me with steroids to level off my blood pressure so it will be safe to go in for the surgery.

The surgery itself will take 6-8 hours. After the surgery they will screw with my adrenaline some more for a few days. I will spend about 5 days in the ICU unit because of this. They will cut me from one side of my abdomen, under my ribcage, and to the other side and then open me up and do the surgery that way. LONG way from the three little cuts I thought I was getting in my back. :(

It will take me two to six MONTHS to recover from this he says. I will not be allowed to pick Lil Man up, vacuum, or do anything that has to do with lifting. It takes so long to heal because they have to remove things and cut through so much muscle.

After the surgery, I will be on two medications for my adrenaline for the rest of my life. I will have to wear a medic alert bracelet as well because if I am ever in a stressful situation aka childbirth, car accident, etc then the paramedics at the scene have to give me an injection of adrenaline so my body will deal with it or I can die. Since I will be on medication I won’t be able to have adrenaline rushes like normal people do whenever I’m in a stressful situation so that is why they would have to give me an injection. If I’m under stress here at home I will have to raise my meds in order to deal with it. He says expect to feel like complete hell for at least 6 months.

So that is where we are at right now. No surgery date at this point. The surgeon said it would be sometime after the holidays and with the way they have things set up I’m thinking the middle to end of January IF we go ahead with treatment right now.