Malia Moore

February 2nd 2011

I am finally down to 2.5 liters of oxygen. The doctors are saying that I am better and that I am ready to be moved out of ICU. However, they do not believe that I will be able to go home without O2. At the Children’s hospital, when you move out of ICU you go down to another floor where things are not as controlled as in ICU. Instead of being in a room with 5 or 6 kids I will more likely be in a room with more. I will not have my own nurse and my parents will be doing most of the work. My parents are worried about me being in a room full of children that are all sick and am worried about me catching something else. It has been really hard for me to ward off bacterias and we do not want to risk me catching something again.  We are talking to my pediatrician Dra. Castro at CIMA (the private hospital) to get me transferred out of here and into my own private room so that I can recover.

In order to be approved to go home with oxygen, the Children’s hosptial has to send out a social worker to my home and approve of our living arrangement. One of the nurses told me that it would take more than a week for the approval to get O2 at home. We do not want to wait a week longer and have decided that if we need to take O2 home we will just rent it. The docs are saying that since my lungs have been so severely damaged that it will probably take months for me to be able to breathe on my own again. We shall see.

Love Malia

At The children’s hospital,

January 31st 2011

Today we have decided to try a new type of respiratory therapy on me. In spanish vest means Chaleco.  So the head of the respiratory department came in with this vest that is hooked up to a machine and hose. The hose inflates my vest and the he turns the machine on and I start to shake and groove like in a washing machine! In all honestly, I like it! Everyone says here comes Malia’s dance when they bring in the vest. I feel more like I am dancing a merengue than anything else because I am really moving!

The idea behind the vest is that is shakes up any secretions I might have in my lungs and after we are through “dancing” I normally give a good cough! Coughing helps bring up anything that might be in my lungs! Remember at one time, they all said I was probably  not going to cough or swallow again! Well I am doing both! The vest  is working well and I like the way it makes me feel. I am getting better each day. I have been off drugs now for a week and am feeling good again and I am finally begining to eat more! I sure hope I can get out of here soon!

Love Malia

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

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.

Malia

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.

Malia

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!

Malia

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,

Malia

Dr. Perez has decided to bring in a Pulmonologist. They have come by to see me and check out my lungs. After being on a breathing tube for so long there are definitely possibilities of my airway being damaged. Lesions can occur after the breathing tube has been inside me for so long. Hopefully this has not happened. All of these factors play a very big part in me being able to breathe on my own. The pulmonlogist meets with my mom and asks how I used to be at home. My mom cant stop bragging on me and telling him how well I was doing before I became sick. I can only hope that after all this time of being in here that I am going to be able to breathe again on my own. I also have to be able to cough and swallow! Hopefull I can do all these thing when the time comes!

The doctor begins to talk to my about the tracheostomy but my parents have decided that we are not there yet and that there is no need to talk about something that has not happened yet. My parents insist that I be given another chance.  I am special and I need more respiratory care!  Once the tube is pulled out my parents have asked that I not be drugged up but awake and alert and ready to give it my best shot! I wonder when this day will come as I still have to get over this new infection. I am not giving up hope. I am a fighter and will give it my very best when the next time comes around to pull the breathing tube out!

Love Malia