Wednesday, January 25, 2012

Updated Frustrations..

Ok. so here goes.. and ill try to break it all down as i feel like i'm in information overload and it's just beyond frustrating. So lets see.. i guess i will begin with ohio news first..

So yeah, that doctor in ohio never even bothered to give us a call to talk or anything. But yet apparently he called last week and spoke to Mackenzie's doctors here and pretty much the gist of what we were told is that he feels she can be treated with a oral medications and that he could send the protocol down and then have one of his collegues/friend (i forgot how she was explained to me) but she is a radiologist as well but at the children's hospital over here but he felt that she would be able to treat her with his protocol and that he would consult if need be. (how can he consult when he can't even return phone calls, it's been over a month now). And from the get go, we have always been under the impression here that the docs she sees would only be able to fix if we had to get surgery or something but since we didn then it was out of their hands sort of with the exception of monitoring.  So the only good news i got out of that was there was to be no surgery. But we didnt get to ask any questions about the drug or anything like that or express any of our concerns so thus the frustration begins. Our doctors here in columbia, wanted us to first to go to MUSC just to see what they said and then compare "notes" and then we figure out a treatment plan. (ill explain more to the "treatment plan" here soo as it's kind of combined now with frustration)
So yesterday we went to MUSC. 2 hour drive but thank goodness weather was gorgeous and Pumpkin did so good in the car. She slept most of it. We get to MUSC which is a very confusing place and it doesn't help that the surrounding roads around it are majority one way. But Scott did a very amazing job even with being sick of getting us too and from. We finally figured out where we needed to go, got checked in, and what i thought was pretty neat was that they had a sign that said, "if you have been waiting for more than 15 minutes, please let us know." I was like what, 15 mins, that's awesome if that is about how long they make you wait compared to other places. We were there for only like 5 at most. We got taken back into our room and the lady ask for all our records and cds/imagies and i thought we were going to be there for a while for them to review everything, but actually we got seen pretty quick. And even though it was quick, you could tell they read over most of it as he was able to ask us about things in the papers and all. We saw Dr. Inmran Chaudry and Dr. Blair (not sure her last name) super super nice people. They took the time and answered all our questions, gave us a lot of information, even gave us options for 2nd opinions, told us his skill and comfort level of expertise. Overall he made us feel very comfortable. So his plan, he wants to do ANOTHER MRI. I'll come back to that as to why in a few sentances. But he said by what he can see, he is still unable to fully diagognis the tumor but it is a hemangonima, and it is vascular but he cant' tell us specficially. So he feels he also wants to treat with the same oral medication that we got told about just last week here in columbia. But the MRI is for 1)to better identify what kind of tumor it is and 2) to see how the blood is flowing in the tumor. He said that if the oral medicaiton did not work then we could try the injections but with injection you have to see how the blood is flowing because if it flows down around her heart and all with the issue of haivng the pda prior, it could travel back from the heart to the brain and cause Pumpkin to have a stroke. He did tell us though that it looks like the tumor is giving us a little bit of time so we got to sit on things. He said though that if left untreated though, pretty much it can start to stretch her optic nerve and cause more serious damage to where she would then need surgery. But he said that if it came down to that, she will have a pretty decent "team" of doctors to handle everything.  So we have another mri on schedule but since yesterday, Scott and I have been disscussing quite a lot. And here is why and as to make our furstration grow.
1) The medication that want to put her on is called propranol. It's a beta blocker, mainly prescribed for people with heart conditioins of sort. This will be something that she will be taking over a period of time. As she grows, so will her dosage. The biggest concern with this medication is going to be how it is going to affect her heart.  The difference between docs:
                   -If we do here, they want to admit Mackenzie back into the hospital for at least 48 hours and monitor her while starting on this medication. They want to track her heart rate and blood pressure for over a period of 48 hours and then show us how to do it all and then send us home and we continue to give her meds for however long.
                    -Doc in charleston said we would adminster drug, run a few test to make sure all is working ok, send us home and we do a follow up in 6 months, but if things change then we call him and just keep montoring from there.
2) we dont want to put her through another mri if she really doesn't have to yet. We have always wanted the less envasive way for Mackenzie and if we can go a more conservatate route then that is what we want to do unless we had no other choice.

3) When i called to talk docs here yesterday to give them the scoop, now keep in mind we have been under the impression this whole time, that the only treatment option we had is whatever the ohio doctor said as we didnt think docs here would treat, just monitor. So when i called them and told them doc in charleston wanted to do propranol as well it was pretty much in a nutshell, oh well we do that. We do that all the time kind of assumption.  So we are kind of like, well why didnt you guys give us that option from the get go instead of trying to get us to go and see this ohio doctor.

4)it just feels like we just keep getting referred to so many doctors who really dont tell us anything new and just keeps overloading us with the same information just in a different language.

So we are happy she can be treated here and it be closer but it's like where is our comfort level at now because it's so annoying that the docs here could have already tried the propranol but they didnt', instead they referred us out and we have been waiting for over a month just for a "plan" when we could have already tried this to see if it would even work before we explored the injection option. Or do we go with MUSC who is yes farther away but yet that doctor was very upfront with us, very informative, and our comfort level or at least mine, was a lot better with him and i didnt feel like i was going to have to keep getting the run around. But then i dont want to make her go through another mri. We are supposly meeting with docs here on friday to lay it all so we will seee. If we go with them then childrens hospital, here we come next week as the earliest. if not next then the week after. So now we wait till friday, well hopefully as i'm still waiting on confirmation on that as well..

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