January 23rd - MRI day.
I was scared out of my shorts but at the same time hopefully we would have answers as to what is going on. So since dylan clearly won't sit still for the MRI he had to be sedated. Which is always hard to watch but it needed to be done. For the first time when I walked back to the recovery room dylan was on oxygen and the nurse was holding his neck up to help him breathe. My insides were panicking! I'm staring at him and staring at the montior. The nurse was so calm and trying to talk to me and my husband and God forgive me but I just remember her talking and it sounding like Charlie Browns teacher ! If it hadn't been for her being so calm I probably would have freaked out.
Since Dylan has such a hard time getting lab work done the doctor had set it up so they drew his labs while he was sedated.
Now the waiting starts... Ugh I hate waiting it's the worse part.
At 4:07 the doctor called - The preliminary report came back no tumor. She said I'm certain it's ROHHADS. She said was going to talk to Dr. Cook her colleagues. Dr. Cook is one of the few doctors in the entire country who has treated patients with this. She was still waiting for the labs to come back but she wanted to talk with me.
I started to cry and when I hung up the phone I yelled and just sobbed. How could this be happening to my precious baby?
And now I had to wait some more.
As promised the doctor called back Monday morning. She was still waiting to hear back from Dr. Cook. But his labs came back. His Prolactin was higher then before his platelets were 680, which is lower then before but still high. And she said Dylan has an iron deficiency there's no question.
Now we go back to Hopkins on February 11th to see the hematologist. I did ask since kids with ROHHADS are prone to tumors in the chest if it's possible that he has one and that's why his platelets are so high, his doctor said she needs to talk to Dr. Cook about it.
More waiting.
I notice Dylan has slowed down quit a bit . I'm not sure if it's because he's gained so much weight or if he could be starting with the breathing issues associated with this. He gets winded so easy now days. I just can't help to wonder what the future holds. The only thing I can see currently is lots of trips of Hopkins.
And I'm so worried about my other son Jacob. It will break my heart to tell him how sick his brother really is. But after talking with my hubby I decided not to tell Jacob what's going but when Dylan starts having breathing issues and needs oxygen or ends up on a trac then I'll just explan he has a hard time breathing and that's why he needs it . Maybe when he gets older I'll explain but for now I can't. I'm so scared Jake will resent me for not being around and always being at the hospital with Dylan. But when he gets older I just tell myself he will understand.
I'v been so blessed with my close family and friends who just listen to me run ideas about what's going on off them and just letting me cry when I need to. I know they probably don't know what to say to me . I mean what do you say to someone who's son has an incurable and potentially deadly disease. But I'm just thankful they let me vent and listen. It means so much.
