Hello- I posted a blog here earlier about my daughter who was going to be 3, and we had not done any further testing. Well.. this last Tuesday was the longest day of my life. We actually went through with the MRA and MRI, which was closest to the hardest thing my husband and I have been through together. I do not want to scare any of you parents who are going through the same sort of thing we are, but I will put it this way... if our daughter was not showing obvious signs that ther condition was worsening, then we wouldn't have put her through it. It started off with one of the techs giving us the wrong information, this was an accident and everyone is entitled to making mistakes, but just listen to how this unrolled...
On the phone i was told that my daughter would be given gas for sedation and that was it, no i.v's... they would monitor her breathing and heart, and that this was all safe. I was also told that we would be able to watch from a room with a window, and would actually be able to see her through the whole process. My Dr did not order a test with contrast (another concern of ours). then when we got there... we were told she would have 2 i.v's, one of them would be for emergency & anestisa, if something went wrong and the other one is the one that they will inject the contrast in. Then we were told that she was going to be intibated (complete tube down into her lungs and she would have a machine breathing for her) the reason for that is because there are points during the mra when they need to stop her breathing to get the best shots near her lungs and heart..etc. then last we were told we would have to wait in the waiting room during the whole process, except the gas part, we would be with her for the first about 2 minutes of the process, and once she was out we had to leave, and they came to get us when they were on the way to recovery about an hr and 45 minutes later. She was extremely tired and cranky when she woke (which i knew was normal).
Now, you have to trust me that I am not trying to scare anybody.. i just want to make it very clear that you make sure that if your going to be doing anything that you make absolutley sure that the person giving you the informatioin, has the right to do so. I was so on top of my game with this, (so i thought) i had a timeline, i had Dr's and techs and phone numbers and this and that.. I thought i had it all down, and was very suprised that i didn't.
One important thing that i learned from the Anestiologist is that not even the Dr makes certain decisions... like wether or not to use contrast. He told me that it is up to the radiologist and what they feel they need to do to get accurate tests.
What i have expressed in this blog may seem like I am angry, but I am not. I know that this absolutley had to be done.. and the way it worked out made it so that We didn't stress out even more
for weeks, knowing everything that was going to happen. Ignorence is bliss.
I am expecting a call from the Dr today with the results, it has been over 48 hrs, which of course worries me... but I know all will be ok.
They did a scanogram (x-ray with ruler) to measure her bones, she is at a 2.4 cm difference now.
A few weeks ago we decided to use an internal shoe lift, this goes inside the shoe & we notice a huge difference in her physical performance. She walks better and for longer periods. She used to get tired quickly when walking long distances, but now she does much better. Although we did have to go shoe shopping for a few new pairs that the lift would fit comfortably in. (uggs work great and winter is coming
It is 4:10 pm so I am expecting a call anytime now with her results...