Tuesday, July 14, 2009

We Have Contact!!

I received a reply from our oncologist at Strong today! She seems willing to help us get scans done here in late July or early August. She did not respond to our specific request regarding anesthesia, perhaps we will have to deal with that on the day of the scans. I was a little disturbed that she asked me if Brady had scans done after his April surgery!!?! Uh...yes...he did...at Strong...and we met with YOU to discuss the results. See what I mean? Brady is like the invisible patient!!! Anyway, it seems as though we are moving in the right direction for the time being.

Brady and I went to PT today. When we got there he was not cooperative and did not want to interact with Linda very much. Perhaps the few weeks off of PT made him not very comfortable. Truthfully, he acted much like he has been at home. He is rather clingy, whiny, and moody. Other times he is his silly self. Normal toddler stuff, or is he trying to tell me something. I HATE wondering and worrying as I try and analyze his behavior. Scans couldn't come soon enough.


  1. Hi Matt!

    It's Holly, and I just wanted to tell you that PT is going great here at home! I also wanted to give you a heads up about having a MRI done at Strong. I usually have good things to say about them, but I'll be honest with you, scheduling an MRI under anesthesia was a nightmare! It was finally done on Friday, but I had to reschedule it three times due to miscommunication between the anesthesia team and my doctors. This was due to the need to reprogram my Baclofen pump, but the frustration your wife is describing regarding protocols and coordination of care was/is no different! Having said that, I strongly recommend asking anesthesia for a consult before he goes for the actual scans! Be firm and clear about what you have done in the past, how well worked, and let them know what you are comfortable with; make sure you review everything (established protocols) right before Brady is sedated for the scan! The anesthesia team themselves are very understanding of needs, but a consult beforehand will likely eliminate any potential for error and address concerns that your doctor(s) may have overlooked. A physical and history is required by anesthesia for any procedure, so the blood and urine tests may be done at the consult as well, providing you have the appropriate orders. (the number to call for a consult is 585-275-2141 or 275-5434)

    Which brings me to the coordination of Brady's overall care. Since you are being bounced between so many different doctors and departments, with no straight answers, I suggest contacting the Social Work department at 585-275-2851 and ask for help with overall case management. There should be someone who acts as Brady's Primary Care provider, that is communicating with everyone involved (pick who you are most comfortable with that has had a reasonable amount of contact with you to know the situation); however, since there doesn't seem to be, a social worker can act as the liaison and "go-to" person if one specific doctor is not heading Brady's teem. It gets too confusing when you have too many people handling the same problem and suggesting different approaches, so I find it helpful for a neutral party to ask all the questions and give all the answers when there is not one doctor who knows all the information.

    I hope this helps, and you are having a good summer! I'll stop by soon, talk to you soon as well; say hi to everyone for me!


  2. Hey Meg,

    Glad you made contact. Sorry folks seem so unaware of everything. I'll pray Brady becomes a priority for them. Holly seems to have some terrific advice above about anesthesia and coordination! Hopefully that will help eliminate some of this fustration for you!! :o)



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