Archive for January, 2011

December 29th

Saturday, January 8th, 2011

It is late now, around 1:00 am. My mom hears me not breathing well. My  mom and dad jump up and rush me to the hospital. We are all in our pajamas. We headed for CIMA the private hospital I stayed at last year when I had pnuemonia. CIMA was not prepared for our arrival. Most doctors are on vacation now and CIMA does not have the frequent visits of emergency situations like the public Children’s Hospital. My mom immediately told the nurse I needed oxygen. The nurse still wanted to check me over. My mom insisted that she give me some oxygen. The nurse called the doctor and took me into a room. At this point I have begun to have a severe seizure. They call them Tonic Clonic.

My body is seizing like never before. My arms are and legs are stiff my eyes are very distant. The doctor arrives and immediately gives me a dose of Midazolam ( a drug to stop the seizure) that is administered in my bum. This does not help I still continue to seize. We try another dose, nothing changes. The doctor tries 4 more drugs to get me to stop seizing and nothing is helping. This is not good, my brain needs to stop seizing.  What is happening is status epilepticus, which means my brain is in a constant state of persistent seizure. This alone can be life threatening.

My body is absorbing these drugs and now everything begins to slow down. I am having trouble breathing I just want to go to sleep. What is this I am feeling? My vitals are being monitored my heart rate is dropping and my oxygen is dropping. God is that You I see? I hear my parents in the distance my mom is frantic my dad is yelling telling them to get more oxygen to me. A familiar face is there, Jose my respiratory therapist from last year. He is trying to get me intubated. I can not breathe on my own now. Please get air into my lungs. My face is turning blue and my chest is barely moving. What is that light I see? Finally I feel air in my lungs.I gasp I am breathing now and my heart rate goes up and oxygen now going up color is slowly returning to my face.

Why am I still seizing? It has been nearly an hour and I am still in a state of seizure. Brain please stop convulsing. I want to rest my body. The doctor is now trying to get the artery in my femur so that she can give me an infusion of midazolam. The prior drugs have not helped me yet. Finally my vein is found the needle is in and a slow infusion of midazolam has begun. This last effort finally gets me to stop seizing. My brain has stopped seizing but my body now has so much to do. Why is it so much work to breathe and pump blood into my heart? Oh no it is happening again. My vitals are going down, my O2 goes from 95 to 86,76,64,53,46,32,20, 15 my heart rate drops to 30  and my blood pressure is dropping rapidly. My face is turning blue again. There is that light again it is warm and comforting there. Is that an angel I see fluttering around me? It is easier for me to just go to sleep, too much work to breathe. I feel Jose pumping by hand air into my lungs. Everyone is telling me to breathe, breathe. Wait a minute, I can’t go yet. I have more things to accomplish. I have to teach my parents more. It is not my time. Ok I can do this breathe again…. turn away from that light… tell the angels bye…. come back to mom and  dad.  Color slowly begins to to return to my face. I am still so cold. Vitals coming back.

At this point my mom has spoken to my pediatrician at Cima. Since the head doctor of ICU is out of town she tells us we need to go to the Children’s hospital so that I can be watched 24/7 there are more doctors and staff there. The ambulance comes. My dad goes with me and my mom follows behind in the car. The ride from CIMA to Children’s is 15 minutes. Cruising along at a high speed the driver takes the wrong turn. He is lost. He takes us down a dead end street. He flies over a speed bump and I rise off the gurney. My dad is very angry now. He asks him do you not know where the hospital is located? Slow down over the bumps he yells.  He finally gets us there and when backing up hits the wall of the hospital. He looks at my dad and says that will be $100 for the ride. It is a complete miracle now that my dad did not choke him. The driver did not get paid. He was fortunate to walk away with his life. The doors to the emergency room fly open. I am immediately hooked up to life support and my first diagnosis is septic shock.

December 28th 2010

Friday, January 7th, 2011

Today when I woke up my fever was back and a little higher than yesterdays. When my dad gave me breakfast this morning he noticed a dark black substance from my gtube. This definitely alarmed my mom and dad. My mom called Dr. Mora (my GI) and asked his advice. He did not seem too concerned and told us to get a blood test that maybe I might have an ulcer or upset tummy. Obtaining a blood test in Cobano would be the tricky part. We thought we would be able to draw blood from my finger for this test. We we arrived to the clinic, we were told they would have to take the blood from my vein. We knew this would be a problem for only Maureen in San Jose knows how to find my veins. My mom told the nurse he had three chances. He did not succeed and we went home.

Once we were home, mom and dad made the decision for us to leave for San Jose. We were scrambling to get everything packed up and were trying to catch the 5pm ferry. My heart rate had accelerated so mom called Dr. Castro my pediatician. She as well did not seem too concerned with my low grade fever and higher heart rate. We decided we would go in and take a blood test the following morning.

We arrived in San Jose at 9pm. Overall I had a good journey. I was not fussy. I was alert and my fever had broke. My heart rate was down as well. Once we were at the hotel I went straight to sleep. At 10:30pm I woke up. Mom and I hung out together in bed. I was not crying I was just not sleepy. I could not really get comfortable. My mom was still not too concerned as she knows that when I am not at a 100 % I sometimes can not get myself comfortable.

Malia

Vacation is over!

Friday, January 7th, 2011

December 27th 2010

It is back to work for me! I have had a great vacation with three days of relaxing and fun! Daniella showed up this morning and we went to the platform to work out. For some reason I still feel tired. After Daniella and I did stretches together I fell back to sleep. Daniella is so sweet to me she always lets me take cat naps whenever I want to! When we came back to the house for lunch, Daniella thought I felt hot so my mom took my tempature. Sure enough I had a low grade fever. After lunch I took a nap and my fever went away. My mom was not too concerned as I really did not have any symptoms with my fever.  I later had dinner and then was off to bed as usual. That night I slept well.

Malia

Feliz Navidad

Friday, January 7th, 2011

What a great Christmas we had together. We slept in late together even Selva and Indio. My mom and dad let me sleep with them last night as they told me the best Christmas present for them is waking up and looking at me! 🙂
We opened presents then had lunch together. Santa was good to me as I have been a very good girl. Dad smoked a turkey the day before to take over to our good friends and neighbors Piti and Miguel. We were having a turkey throw down as they cooked theirs in the oven. Mom made the Moore’s infamous stuffing and two pumpkin pies! We had a wonderful afternoon together with good food and great friends. Hope everyone out there had a very Merry Christmas!
Love to all,
Malia