Tuesday, October 1, 2013

Biopsies, Lumbar Punctures and New Atlanta Doctor

Last week was spent trying to nail down all the loose ends for Bruce's trip to Atlanta.

We are happy to find out that Bruce does not need to be off supplements for 8 weeks. After going round and round to make sure...the doctor e-mailed me to let me know that there is no problem with him continuing his supplements. They will not affect his results in any way. I'm sure I was a pain in the ass but I didn't want to get up there and find out we didn't do something right. I cant afford to start off on the wrong foot. There is not many of his kind.

Bruce has a MET Test on Wednesday morning. Fasting that morning and then they hook you up to a couple of machines to measure your endurance...Muscles, lungs, heart and anything else I don't know about. Consult with Dr. Shoffner at 1pm and then surgery on Friday at 9am. Anesthesiologist says to stick round for a day to make sure all is OK.

This is very hard for me to say but I am not going this time. It was a hard decision to make. I agonized over it for a while. When we were trying to decide on a date it was on the exact times my daughter has 2 auditions. 2 auditions Katie can not miss out on. In the theatre world, you must be there to audition. No exceptions. She has a chance to audition for a summer Broadway workshop in New York. Its a very big opportunity and a life changing experience. I can not say sorry you cant go...but she did tell me she would skip the audition, me knowing full well that she was making a very hard decision. She has gone almost every time we have taken Bruce to a doctor or an infusion. She has never complained. She just does what she needs to do. Very logical. Katie is now taking college courses and she would miss out on a lot of work. She has a full plate. When you have 2 children you must give to both and keep the balance even when one is well and one is sick (hate that word). It is really quite simple. Dad goes with son to meet new doctor and get through the surgery. I trust my husband completely and I need to hand over the reins once in awhile...we are always a team but this time it will be different. I watched them leave this morning and it was hard to know I wasn't getting into the car myself. I already miss them but I know they will be fine.

As far as me missing out on information from the new Doctor...I don't have to worry about that...Its just to complicated to understand. Cant even look things up... hubby and I have tried. HAH! You only get so much information and then um...well we haven't got a clue. I was told we have an hour with Dr S, to go over history and I have already sent him a summary on Bruce since birth. Maybe he can explain a bit better about the genetic testing we have done..but I doubt it. He will look at his own lab work since all those tests will be redone by him.

It will be a long week for me. We are a family that doesn't like to be a part. After Bruce and I talked and talking with Bruce Jr knowing he was fine that he was going with just his dad..I felt much better. Both boys going on a road trip. The only thing Bruce Jr is worried about is what leg the biopsy will be done on. Its 2 1/2 inches long. He is still numb from the first one. He's not even worried about the lumbar puncture. My brave young man. I am so thankful for the husband that I have....but its still going to be a long week.

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