We have been trying since JUNE to schedule Braden an MRI. Sounds simple, right? If you have read any of this blog before, you know just how far from the truth SIMPLE can be:-)
What is complex about Braden's case... is three main things. 1. The neuro wanted a special kind of MRI done (spectrometry?) done... it's like a more in-depth look at damaged areas, I think. 2. Due to Braden's respiratory condition, the hospital (and only place in town who does this special kind of MRI) did not want to do an MRI on Braden unless he was on a ventilator. 3. Sedation was not an issue because of his floppy airway concerns. SSSSSOOOOOOOOOOO... we finally got the neuro on our side about NOT wanting to put Braden under anesthesia, as he has a very difficult time coming off anesthesia, and an even more difficult time coming off a ventilator, and we felt it wasn't a pressing enough of an issue or necessary in order to validate going through all of that and the risks associated with those procedures. So we FINALLY got the hospital to agree to do it without sedation and without anesthesia, and if it didn't work, then we would just try to do it at another time when he was already under those conditions of a vent for surgery, etc.
They needed to do a 2-part MRI... a non-contrast and a contrast MRI. The first they do without anything... the second they add a contrast dye to the blood stream to the brain to get a clearer picture. Braden slept soundly through the first two parts of the MRI, and did just fantastic - NO SEDATION, NO ANESTHESIA... so it was worth the struggle and the fight against the "doctor's/MRI team" judgement to have it done the "mommy and daddy" way. He did just fantastic, and they did not need to do the 'spectrometry' part of the MRI. We are so proud of him, and knew that he could prove the MRI team wrong about his ability to be still and quiet without sedation or being put under. Of course his nurses were doting all over him:-)
We started doing our VEST therapy a few weeks ago, and I have included pictures. It looks a lot like a water safety lifevest, it inflates with air, and then pumps air into the vest and it is like us patting him all over to break secretions in the lower lungs up to work them up into the upper airway for coughing out or suctioning. Our little daycare friend Jazmyn calls her VEST machine her "washing machine", because she says it shakes her up like sitting on the washing machine:-) Mommy catches people a little off guard, when she says "I have to go shake Braden" (meaning hook him up to his machine that more or less shakes him):-) Braden, funny as he can be - usually sleeps through both treatments!! We think this machine will continue to help Braden grow stronger, by helping us avoid additional pneumonias he may be susceptible to. As you can see, he gets his breathing treatments at the same time, it helps break stuff up in the lungs even more so, for better pulminary health!
I have also attached a picture of Braden's picture up on the wall at Sears... he is up there with some professional models!! :-) We had his Christmas pictures taken and will share next week.
Thanks for checking in on us - check back soon for Thanksgiving photos and his christmas photo session at Sears! Love to all,
The Wilsons
5 comments:
Hey Kodiak what are they hoping the MRI's will tell you? I hope you and yours have a fantastic Thanksgiving...can't wait for the pictures!
Mandy
Basically, because the brain can change so much, they are trying to get a better understanding of how much of Braden's brain has been damaged. We can then say X% of his brain suffered damage... and because the brain can change and adapt, we are looking to see if anything has changed in a year.
The VERY FIRST MRI we had done on him at two weeks old didn't show any brain damage... and we now know that isn't the case - so it's good for us to do it at least once a year. If things change, it could mean he becomes a candidate for brain surgeries or devices to help with the seizures. At this point we are not - the damage as we know it is not localized in one area like a tumor... it is more like a cobweb and inoperable at this point.
I still thing Braden is the best looking "model" on that board at Sear's!
your little man is so awesome, strong and handsome! =) hope you guys had a good thanksgiving.
Post a Comment