Malia Moore

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

The weekend has passed. It is time to take blood again and guess what news the doctor has for my parents? I have inherited a gift from the hospital a bacteria was found inside my tube named Pseudomonas. Dr. Perez (our favorite doc) has discovered this due to my C Reactive protein being positive and that other  blood levels of mine are  dropping. The C Reactive protein levels determines the level of inflammation in my body. High levels of this protein are caused by infection. Dr. Perez acts right away and begins to start me on an antibiotic immediately that day.

My hemoglobin level is down as well. I am not looking so good again. I am very pale and Dr. Perez says that I need a blood transfusion. I have to wait all day to get my blood transfusion and as the day goes on I am looking paler and paler. This is not the news we wanted to hear but we all have to accept the fact that I am sick again. The doctor tells my parents another ten days at least before we can begin to think about taking out the breathing tube again. On one hand, I have been sicker since entering the ICU so I know I will beat this secondary infection again. It is simpy the waiting game of time and patience. I too shall conquer this! I am not giving up! I refuse to give in after coming so far!

Love Malia

We have all had to accept that I am back on the breathing machine again. None of us like this but it is reality for now. Dr. Perez is now talking to us about the possibility of a tracheostomy. When he first tells my mom this she says no. Absolutely not. My parents feel like I have not had a fair chance of breathing on my own. I as well feel like I have been cheated so I am with mom and dad. NO! We will give it another try!

I am feeling better. I was less groggy and  much more alert. Today for the first time I looked at my mom and dad! They were so happy. Having been so drugged up my parents could never get to me to look at them. It has been a long time since I have felt good and so today it was a wonderful thing to be able to connect on my parent’s faces and see them smiling at me.

Later that evening my heart rate shot up. My mom has said a few times to the doctors that she thinks something is brewing inside of me. My blood tests are coming back normal. I am showing no signs through my blood of detoriation. Although that mom of mine has a radar that just senses when things are off with me.

My dad has been doing the 8pm till 8am night shift with me. He is noticing that my heart rate has not come down. I am staying at a constant 140 beats per minute if not higher sometimes. In medical words this is like cardiac arrest. Something is just not right. I feel weak and my heart is having to work much harder. All night my heart rate stays high even while I am sleeping. Normally when I am sleeping my heart is between 95 to 110. When I am waking up my heart rate is shooting up to 150/160. My dad is getting very nervous about this as he knows my heart rate is normally much lower. The next thing you know I spike a fever!

With my fever and the heart rate, signs are begining to show that mom was right things are definitely brewing inside of me! I sure hope not! My dad kept on the nurses all night to say that my heart rate was not right and there was something else causing my heart rate to soar.

In the hospital, you begin to notice that nurses and doctors will tell you anything to pacify you in the moment. Thank goodness for my mom and dad as they are my biggest advocated and without them I would not know where I would be! 

Love Malia

At 7:45 am the doctor took my breathing tube out. The sensation of having  that tube out of my throat is wonderful!  I take my first breath of real air and it feels so good. I am breathing on my own. The first 24 hours pass by and I am getting the hang of breathing again. My parents are so happy! We are getting so close to being outta here. My mom that night went shopping and bought cake and cookies for the nurses and doctors! We had already talked to Dra. Castro and were organizing for my transfer to the private hospital on Wednesday! Yippee, we are going to get out of ICU!!!!!

On Tuesday morning, at 8am I had a small seizure. The doctor at the moment decided to give me Valium to stop my seizure. When my mom arrived that morning I was not breathing so good anymore. I also have a ton of saliva and secretions right now. The valium helps add to the secretions. The xrays showed my lungs being cloudy. I am having trouble coughing and swallowing. The valium is taking effect and I am getting very sleepy. This is not good, the doctor talks to my mom and tells her that it is a very big possibility that I may have to be entubated again and not to be surprised that when she came back from  lunch I would have the breathing tube again.

They have now put a bipap mask on me. This means positive airway pressure into my lungs. The mask will help push more air into my lungs. Right now everyone is trying to keep me from being intubated.  My mom says I could be in star wars with the way the mask looks on me. It is super tight on my face, I really do not like the feels of this it is so so tight. I feel claustrophobic right now. My heart rate keeps rising. I am not liking any of this anymore. I am getting tired. It is getting harder and harder to breathe on my own. In the end, I have to have the breathing tube put back again. My parents are crushed. I think I might hear my mom crying in the background. They are drugging me up again. I am alone as mom is not allowed to stay in the room while they intubate me again. Maybe next time I will be able to do it.

Malia

Four days have gone by since they extubated me. During these four days I have been heavily sedated. I am begining to feel a little better the infections are now finally going away. They stopped giving me antibiotics after 10 days my mom was pushing for 14 but they said ten days was enough and the infection was gone. I sure hope I dont get some kind of hospital germ in here.

I had a seizure on Saturday. On top of my seizure medication they are giving me valium to help control them. They are sending by a neuro this week to talk to my parents about changing my medication. They are also taking out my tube tomorrow. I sure hope I can do it this time!
Love Malia