Today when the doctors made their rounds there were at least 12 of them standing outside the window looking at me. Mom and I were a bit intimadated. We had the pulmonologists, respiratory therapists, three of my doctors plus the director Dr. Ramirez and a few residents looking in at me. What does everyone have to talk about? I hate to say it but I have become quite famous around here!
Today is day three of me being on the bipap mask. The mask is starting to effect my face. The pressure is so strong that it is making a small lesion on my forehead. My eyes are very swollen from the pressure. Doctor Ramirez tells my mom that he has patience for me but that I can not live on the mask and that it has got to come off as the lesions can get worse. They are talking about putting me on high flow oxygen. This system will give me oxygen and an extra little push of air into my lungs.They will put in a nasal cannula. They have discussed that I will probably need to alternate from the high flow oxygen to the mask in order to keep me under control with the oxygen flow.
We normally breathe in oxygen at 21% The idea is to continually lower the high flow oxygen a little bit everyday and then eventually put me on regular oxygen.
Later that evening we made the switch. I am recieivng 12 liters of oxygen per minute and at 70%. The 12 is the velocity of air getting pushed in and the 70% is how much oxygen I am getting. Okay so far so good, I am doing this okay not too bad breathing again on my own. They continue to nebulize me and give me steroids. Right now the topic of discussion amongst the respiratory therapists is that the stridor is going to be what brings me down. One of the respiratory therapists trys to make my mom feel guilty about making me have to work so hard. He says ” I know you dont want my opinion but Malia should have a tracheotomy. I do not feel she is going to be able to succeed breathing on her own and her lungs are severely damaged from the infection/pnuemonia.” Hmm, I hear this and think now wait a minute I am on day three of being off that machine. Yeah I have had help from the mask but I am doing okay right now on this high flow oxygen.I mean come on I need my therapists and doctors to believe in me! Can we have just a wee bit of faith and hope here please? Night time is here, I have to be in just the right position for everything to be working right. The doctors even have told the nurses to not touch me. Everyone is walking on pins and needles right now since the mask has come off but I am maintaining and keeping my oxygen levels above 90. Goodnight everyone. Tomorrow is going to be a beautiful day!
Malia