Archive for February, 2011

Snuggling in my mom’s arms!

Tuesday, February 15th, 2011

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.


Still doing it on my own!

Tuesday, February 15th, 2011

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!


Doctors and more Doctors!

Tuesday, February 15th, 2011

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!



Sunday, February 13th, 2011

January 26th 2011

I made it through the night with the mask. I am doing the breathing and the mask helps me put extra air into my lungs and gives me a little extra push. Today we continue with chest therapy and aspirating me. My parents bought a  G5 Percussor Massager to help with my therapy. It is a hand-held percussor used for respiratory therapy. At the hospital they have one of these but not everyone carries one with them. My parents decided to get one so that I would have every opportunity possible to succeed in my extubation. I do like the vibration on my chest and it helps lossen up all the flem that is stuck in my lungs. Josey Mar does  a great job massaging me! The stridor comes and goes and I am continuing to maintain on the mask and stay sedated for the time being. 

Today the head of the respiratory department came by to see me.  He has decided to switch me to a different type of breathing mask. The mask he is switching me to is smaller and does not cover my entire face just my nose and part of my eyes. It is very tight fitting. I continue to stay sedated.  Again everyone is saying I am walking a tight line on going back  on the breathing machine. I know that this time I am going to conquer the machine and do this on my own. Have patience everyone. I just need more time.


Third time is a charm!

Saturday, February 12th, 2011

I had a good night last night. My dad had been with me all night. At 6am  when visting hours were over dad went to get coffee and to call mom, when he came back my breathing tube was being pulled out at that moment. Mom flew up there right away to be with dad and me.  The tough part is that visiting hours don’t start up again till 10 am. Mom and dad could barely stand not being able to be with me in the room cheering me on. Mom was able to come in and see me even with a few raised eyebrows looking her way. As you know, only one parent in the room at a time.

I am breathing on my own right now. I never knew how darn hard it was to pump air into those lungs. The machine has been doing it for me for so long that I have become accustomed to not having to work so hard. So far so good. I am doing okay not great but okay. I am having to be nebulized and given steroids for my stridor. You may ask what is stridor? It is when the airway is obstructed. Since I have been intubated  for a month my throat is very swollen. The nebulization helps take away the inflammation as well as the steroids. I am also being aspirated quite often. 

My parents have not left my side. This time there is not going to be any mishaps and there is no room whatsoever for error. I needed all the stars correctly aligned for me. The doctors were already saying that I was walking a very fine line of having to be intubated again.

 At 7pm that evening, I started having a harder time breathing. The stridor is really messing things up. Dr. Boza another great doctor who looks after me has decided that it is time for me to go on the Bi pak mask. This is a mask that covers the majority of my face and pumps air into my lungs. If my lungs begin to collapse the air helps inflate them, the mask also puts alot of pressure on my face and that makes me very anxious. I have to be sedated a bit so I can remain calm. The mask is very uncomfortable but I am managing I hope I do well throughout the night.


January 24th 2011

Tuesday, February 8th, 2011

I have recovered from my bacterial infection in my lungs. They take xrays everyday and my lungs are looking clearer. My blood levels have come back to normal. Tomorrow is the big day.  I have to give it my very best. I have to show everyone I can breathe on my own! I keep telling myself that I can do it this time! Everyone is giving me a fair chance. The doctors have taken me  completely off all drugs. No more morphine, methadone etc. I am looking at my parents and my grandma. I am alert and aware of my surroundings. My mom and dad have spoken to the doctors and have asked that the pulmonologist do not do a bronchoscopy when they pull my breathing tube out tomorrow. In order to do this procedure they would have to sedate me and with sedation comes secretions. I will have a hard time managing my own secretions let alone more of them that the drug would cause. My parents also know that I dont like anything stuck up my nose and having the brocnhoscopy would call for that and I don’t need any more added stress.  I want a fair playing field and the doctors have agreed to give me one! 🙂 Gotta get a good night sleep tomorrow is a very big day!


Surviving the Hospital

Monday, February 7th, 2011

As a patient of the Children’s Hospital I feel like I have a right to express how I have felt during my stay there. Every day has been a challenge for me. I am here fighting with all my heartand soul to survive to live. I have a great passion for living so please doctors and nurses understand that yes you see many patients everyday but believe me I am different. I may not be able to tell you how I feel but I express many things in my eyes and different gestures I have.

The nurses have been good to me. Some much much better than others. I understand that you cant fall in love with every patient nor be my best friend but I do appreciate that you talk to me, that you tell me good morning and that you treat me with the utmost of gentle care as being in this bed hooked up to so many devices is not very comfortable. I ask that if you are bathing me to please cover me up right away. It is very cold in here and I dont like being cold. Please keep my bed upright after my bath because I can’t lay flat on my back due to my reflux. If you see I am sleeping and you know I have not slept and have been agitated all day please please dont wake me to change a diaper that is not really wet. You can bend the rules sometimes! I also request that us sick kids would really appreciate it if  you would keep your voices down when talking amongst each other. It is hard enough as it is to go asleep with all the alarms, lights, and many different sounds.

I know my parents have been hard to deal with sometimes but they love me and know me best. Please listen to them when they explain to you how important it is to mix my seizure medication correctly. My Valporic Acid levels have dropped and my seizures have increased due to not properly administering my medication and this new infection I have!

The respiratory therapists have done a great job on keeping the secretions out of my lungs. I do have one request though when you are coming at me with masks to cover my face and hoses to stick down my nose and throat please let me know that you are here to help me not torture me. I get really scared when you dont tell me what you are doing and the trauma of having to be aspirated is bad enough as it is.

Doctors thank you for the wonderful attention you have been giving me and for doing such a great job of getting me better. I only ask that you do not under estimate me. Yes I am special, my brain almost completley smooth, but I have not earned the name little bull for nothing. Just wait and watch I am determined to defy the odds you have given me. NO TRACHEOSTOMY FOR ME!

With all my sincere gratitude and thanks,