Archive for January, 2011

January 15th 2011

Sunday, January 23rd, 2011

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

January 14th, 2011

Sunday, January 23rd, 2011

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

January 13th 2011

Sunday, January 23rd, 2011

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

January 10th 2011

Sunday, January 23rd, 2011

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.


January 9th 2011

Sunday, January 23rd, 2011

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

My first extubation

Tuesday, January 18th, 2011

On January 4th the doctors have switched me back to regular ventilation and the following day they think I am ready to have the tube taken out and that I should begin to start breathing again. I have not been able to have any milk for 8 days. I am only getting glucose. They are just now begining to feed me little bits of milk at a time. I know I am not ready for this tube to be taken out. I am so weak. I am just now recovering from Septic Shock, Double Pnuemonia, Urinary Tract Infection, and the bacteria that started this all and severely kicked my butt named Aeromonas Hydrophilla.

I last 36 hours breathing on my own. I am trying so hard but it is dificult. I am having problems coughing on my own. I have to be knocked out again and the tube to the ventilator goes back in my throat. Each time I have to be intubated it is a very stressful situation for us all.


New Year’s Day

Tuesday, January 18th, 2011

I am feeling terrible today. My heart rate stayed up high all night and really got my parents concerned. My mom spoke with the doctor that morning and told her that her gut feeling was telling her that something was wrong that I was sicker. The doctors previously had been thinking of extubating me today. When the doctor came into check on me she did find me looking much worse. The next thing you know they are taking away the ventilator I am currently on a normal ventilator and now they are  putting me on a high frequency oscillatory ventilator. This machine is pumping air into my lungs much faster than the other one. The machine basically vibrates my entire body. I stay on this ventilator for three days.

Mom and dad were surprised to find me looking like this and hooked up to this machine. I am not looking or feeling so good right now.

Love Malia

New Year’s Eve

Tuesday, January 11th, 2011

This was not exactly how I expected to spend New Year’s Eve!  The doctors and nurses were in a festive mood at 11pm they allowed both parents to be in ICU unit. It was nice to have mom and dad right by my side. We are on the fourth floor and there are many windows in the room which made it possible to some pretty good fireworks.

Later that night around 2am my mom noticed that my heart rate was up much higher. I usually run a steady 100 to 110 but I had jumped up to 150. The talk around the doctors that day was that they were planning on taking out my tube the next morning. My blood tests had been coming back good and they seemed to think I was ready to be off the breathing machine. My mom on the other hand was starting to get worried as my heart rate was not going down.

The next morning mom talked with one of the head doctors and told her that she suspected something  different was happening with me. My mom knows me very well and she was convinced that I had taken a turn for the worse. The doctor had not seen me yet and she seemed confident that everything was fine. Once she looked at me, she became very concerned. The next thing you know they were not taking out my breathing tube but putting me on a high frequency ventilator. The word around the unit is when you go on that machine things are really really bad. A xray later that morning showed that both lungs were completely white and I had been diagnosed with double pneumonia. Not good.

Everyone was now very concerned. More anitibiotics were administered and I stayed on the high frequency machine for two more days. I looked terrible. My body became completely swollen. My blood pressure kept dropping. My mom and dad were frantic with worry. My mom asked the doctor if we were at the end of the road. She said she still had a few tricks left in her pocket. The doctors now had added another medication to help boost my blood pressure. If the second drug did not help to bring up my blood pressure then we were in trouble. Thank goodness the second medication helped bring it back up!

The cardiologist came to see me that day. I have a murmur that I always get checked out once a year. The heart doctor said my heart was functioning 100% so that was good news.  I am very gray looking and the swelling of my body looks terrible! Recently the hospital had sent by the social worker and the pallative care people. My parents are not so excited to talk to them.

I have a very long road ahead of me in regards to recovery. I have a huge support group out there praying for me. I am not ready to throw in the towel and nobody else should be either!

Love little bull


Sunday, January 9th, 2011

I am now in ICU. What a different place than ER. The ICU is what you would see back home. Everyone is wearing gloves and masks and the enviroment is sterile. Thank goodness. We met the Dr. in charge for the night. Every day the doctors rotate so I do not have a doctor that is overseeing just me. The doctor that evening promised to take good care of me. My mom and dad can not be with me all the time. Only one parent is allowed into see me at a time. My parents have to have special permission to come in and out of the hospital. There are guards at the entrance of the hospital monitoring everyone that comes into the hospital. They are like drill sargeants.

The Children’s Hospital here is 45 years old. It is very well respected and we have been told ranked #1 in Latin America. They do a good job of taking care of kids but a lousy job in taking care of the parents. Let me explain. There is no cafeteria, no vending machines and no place for the parents to congregate at all. The guard the other day confiscated my dad’s chocolate bar. No food whatsoever is allowed in but my parents have become sneaky in that department. The waiting room for parents in ICU is basically outdoors. On the other side of the wall where I am there is a row of plastic chairs. There is no wall in front of these chairs but a chain link fence. We are on the 4th floor and although my parents have a nice view of the mountains it has been very cold and windy during the day and even colder at night.We live in the tropics but my mom has been complaining that we might as well be in Canada for as cold as it has been!  My parents have not left my side until they are not allowed in ICU.

Fortunately my mom and dad met a really nice orderly named Juan Carlos. My mom jokingly asked him one night if he would rent them a hosptial bed. There are extra beds lined up in the hallway. He smiled at them and gave them the shhhh sign and went off for a while. Later he came back with a plastic mattress. In the far back corner of the hallway are four nicely hidden chairs. He threw the mattress over the chairs and then put a sheet down for them. Mom and dad take shifts coming and going during the night to be with me so at least they now have a place to lay their head.

My granny came to visit me. We were planning on bringing in the New Year together with Paw Paw Brown and my cousin Casey. Oh well maybe next year! Am glad to see my granny she has been great moral support for my mom and dad!

I wonder how long I will be in ICU?


December 30th

Sunday, January 9th, 2011

I made it through the night. I am on morphine and many other drugs. Since I have septic shock I am on Dopamine which helps keep my blood pressure stable. This is very important. The septisim is trying to keep my blood pressure down. At Children’s hospital they tie your arms down to the bed so there is no risk in pulling out the hoses. I have so many coming out of me right now. I am at no risk for moving as I am so sedated. Right now I am not looking my best. I have a tube ran down the back of my throat pumping air into my lungs and helping me to breathe. They have poked me at least 20 times trying to draw blood from me. Even though they found the artery in my femur they are utilizing it for all the drugs and need to be taking blood for testing from another place. My arms looks terrible.

At CIMA they mentioned I might have Dengue since my plateletes were so low, then Menigitis was thrown out there. My parents both knew I did not have either one of those. What in the world has taken a hold of me? I have been so healthy for so long why is this happening? The doctors here are saying I have a urinary tract infection. They suspect that I may have refluxed my urine back into my kidneys thus causing this horrible infection and bacteria. We have to wait 48 hours to see what type of bacteria it is. Right now they are pumping broad spectrum antibiotics into me to cover all basis. I am still in the emergency room as there are no beds available in ICU. Needless to say being in the emergency room has been exciting.

At 7pm we get the word that I am being transferred to ICU. This is very good news as I will be well taken care of up there.