Letter Sixteen

October, 15, 2017

Veronica, 

Finally there is hope! Someone finally heard me out and realized that Noel never got a Nissan when they first placed her g-tube. I went to see the specialist at Children’s Hospital and they finally listened to me. A Nissian is where they change the the function of the valve in the esophagus. It takes it from a two way valve- where food can go down and come back up; into a one way valve so that only food can go down and nothing can come back up. I don’t know why this procedure wasn’t done originally because in most cases when they place a g-tube they also do this procedure. The good news is they didn’t do it for Noel, so this is probably why she’s been having all her feeding issues. So the good news is she is scheduled to have this procedure next week right here at our local hospital; we don’t have to travel!

Update: 

So the procedure is done and Noel is resting. But, unfortunately we are not at our local hospital, we are at Children’s Hospital again. I am so mad and frustrated. I had talked with the surgeon, who was suppose to do Noel’s proceed back home, at length about her muscle disease and making sure that he and his staff would be able to adequately care for Noel. He kept reassuring me, almost to the point where he was getting annoyed, that everything would be fine. I was just extra concerned because every procedure she’s had at children’s they were extra cautious with Noel. So the morning of the surgery we are in the pre-op room and the anesthesiologist comes in and says, “I don’t feel comfortable putting Noel under anesthesia. I just found out about her this morning.” He said he had never worked on someone with the diagnosis of Muscular Dystrophy and there could be serve complications putting her under. He said, “if she was my daughter I wouldn’t want me to preform this surgery.”

I was so mad. This is exactly what I was trying to avoid and what I was trying to communicate to the surgeon about; but he wouldn’t listen to me. After the anesthesiologist left the surgeon came back in the room with his “tail between his legs.” He knew that he had been disrespectful to me and that now he was in the wrong. I couldn’t even make eye contact with him. Not only was I so mad that he didn’t take the time to really listen to me, but now Noel wasn’t getting the procedure that she needed so bad. It is so hard to try to advocate for your child to a Doctor who thinks they know everything and that your some uniformed parent. I get so discouraged dealing with this. I didn’t even sleep the night before because having your little 11 month old go into surgery is terrifying and it was all for nothing. 

So thankfully children’s hospital was abled to fit her in yesterday! I’m so thankful that she finally has this procedure done. It means that she’ll finally stop throwing up all of her food and she’ll finally be able to eat and gain weight! It was also nice that Noel was one of the first patients to be seen at the new Children’s Hospital. Its a brand new state of the art building, so if we have to be in the hospital this is a great one to be at. We’re hopefully going to get discharged later today or tomorrow which means we may be able to make it to your bbq this weekend after all!  I could really use some time relaxing and hanging out with friends after the week I’ve had!

Love you friend, 

Tina