Malia Moore

January 29th, 2011

Today I woke up a bit cranky. It  has been 34 days that I have been in ICU. I get moved every now and then to one side then another so that I do not get bed sores. I just dont feel 100% today. My dad has not been able to come into ICU as he caught a cold last week and has to stay away from the hospital until he gets better. I sure hope he gets better soon I miss seeing him! He keeps me company and sings me songs at night especially my Bob Marley Three Little Birds! Hurry up dad and get better!

 My mom has been spending day and night at the hospital and this morning she asked the doctors if she could hold me. They agreed it was good for me to be held now that I did not have a gazillion wires and hoses coming out of me.  I was fussing and fussing when mom came in and the moment she picked me up and held me in her arms I calmed down. It has been a long time since my mom has held me and it felt so so good to be back in her arms. My mother’s arms are so comforting I fell asleep right away and I do believe this is the best breathing I have done in a long long time. I am totally relaxed and at ease in her arms. My grandma was watching thru the window and my mom looked up at her to see that she too had tears strolling down her face. It was an incredible moment for us all and one  that I will never forget. I feel safe and that everything is gonna be alright now.

I slept for two hours in her arms. Every doctor that passed by had to stop and stare and give a big smile. Today has been a glorious day.

Malia

January 28th 2011

I made it thru the night!!!! I slept very well. I did not even have to switch to the mask!! I am so glad I did not have to use the mask again !! I am excited I am getting the hang of this now! Things are going good and my stridor is not as bad as it was. I am finally off of antibiotics and have overcome my bacterial infection. My lungs are starting to look good and I am slowly but surely begining to look like my oldself. Both mom and dad are spending the night and watching over me like a hawk. Things are going good. They have been doing lots of respiratory therapy on me but I am not having a ton of secretions are flem which is great!

When the doctors came by in the morning to see me they could not belive that I did not have to use the mask at night. Things are looking good and I am begining to enjoy exceeding the doctors expecations of me! Only time will tell now and that I stay clear of any other infections! That is going to be a tough one!

Malia

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