Well we had a few appointments today. Ok just one and then a drop on a doctor that didn't have the results for us when I thought he would. Wow am I jumping around??? Let's just back it up a little. Rhett and Dylan had an appointment to see the orthodontist this morning and we just made it but then the orthopedic doctor wanted to see us before he left the hospital at 11 am. What!!! It was only 10 am when I found that out as I was flying to get there for the appointment at 10 am. Ok so we get there and Rhett was seen as it was nearing 10:30 am... I am totally feeling under the pressure to get upstairs to see what the orthopedic doctor has to tell us that he should have told us a week ago. Great next it will be Dylan's turn and we will miss our shot at meeting the orthopedic doctor. :( All of a sudden the orthodontist had to go into the OR for a patient that needed something from him. YEA!! That means we can run upstairs and meet the other doctor. So we head out and make a break and let them know we will be right back. So we get there and have them tell the doctor and his assistant that we are there. She comes to get us and told me that we was just about ready to walk out the door to head the the lab or where ever he was going. Yes!! That means we get to see him and get the CT results that we were suppose to get like a week ago. Can't wait to let them know that the surgeries are not helping and then see where that takes us....
Uh NOT! We found out that they got the lung volumes for both Rhett and Dylan but,...
they don't have anything to compare it to since they don't have the results from Rhett's previous CT scans.
WHAT!!! Are you kidding!!!
This is a hospital you would think that they would have something that told his lung volumes since he has been having surgeries for 6 years and CT for about 3 of those year I do believe.
Holy cow now what???
Well he is scheduled for April 1st for now but I am researching to see if I can come up with the lung volumes that seemed to have never appeared or disappeared. I did ask him,
"If we do the surgery on April and you have to revise the left side and expand the right, than we will need to get some more PFTs and have another CT done in September to see if things have changed because if they haven't..."
he answered,
"We are no helping him. He has the biggest devise so he can't get a bigger one."
BINGO! He wins the prize...
So that is the plan for now but heck I am still trying to track down some paper work so that I might be able to spare us going through the hoops. He totally agreed to my terms on the surgery but the worst part is that Rhett was there playing around and so was Dylan.
After the meeting with that doctor Rhett turns and looks at me and says, "Mom what is going to happen to me?"
Even writing this now it makes me cry. I have no answers to give him and neither does the doctors.
How do you inform you child that the doctors can do nothing to help him continue to live and he will die? In my gut I have felt this way since October and now the doctors are finally starting to catch up with me. But there is nothing I can do until we can prove that the surgeries are not helping. So I feel like I have about 6 months to come up with a good way of letting him know and then just living life to the fullest.
After that meeting we headed back downstairs to have Dylan's appointment with the orthodontist and that came out as ok, nothing that he can do now but in 1 1/2 years he wants to start expanding Dylan's jaw.
My sweet boys! You go through so much to help the medical professional learn. I love you both with all my heart and as I pray to find peace and knowledge I know that there are many other there that love you too.
Uh NOT! We found out that they got the lung volumes for both Rhett and Dylan but,...
they don't have anything to compare it to since they don't have the results from Rhett's previous CT scans.
WHAT!!! Are you kidding!!!
This is a hospital you would think that they would have something that told his lung volumes since he has been having surgeries for 6 years and CT for about 3 of those year I do believe.
Holy cow now what???
Well he is scheduled for April 1st for now but I am researching to see if I can come up with the lung volumes that seemed to have never appeared or disappeared. I did ask him,
"If we do the surgery on April and you have to revise the left side and expand the right, than we will need to get some more PFTs and have another CT done in September to see if things have changed because if they haven't..."
he answered,
"We are no helping him. He has the biggest devise so he can't get a bigger one."
BINGO! He wins the prize...
So that is the plan for now but heck I am still trying to track down some paper work so that I might be able to spare us going through the hoops. He totally agreed to my terms on the surgery but the worst part is that Rhett was there playing around and so was Dylan.
After the meeting with that doctor Rhett turns and looks at me and says, "Mom what is going to happen to me?"
Even writing this now it makes me cry. I have no answers to give him and neither does the doctors.
How do you inform you child that the doctors can do nothing to help him continue to live and he will die? In my gut I have felt this way since October and now the doctors are finally starting to catch up with me. But there is nothing I can do until we can prove that the surgeries are not helping. So I feel like I have about 6 months to come up with a good way of letting him know and then just living life to the fullest.
After that meeting we headed back downstairs to have Dylan's appointment with the orthodontist and that came out as ok, nothing that he can do now but in 1 1/2 years he wants to start expanding Dylan's jaw.
My sweet boys! You go through so much to help the medical professional learn. I love you both with all my heart and as I pray to find peace and knowledge I know that there are many other there that love you too.
1 comment:
Have hope my dear. We know that there is a plan, even though it isn't always clear what it is. Hang in there and know you're - and the boys and girl! :) - are in our prayers daily. Love you.
Post a Comment