Malia Moore

Merry Christmas everyone!

We are having a tropical Christmas! My mom and dad decorated our palm tree with lights and ornaments! I have my own stocking filled up with goodies for me! My granny and paw paw are here to celebrate Christmas with me! I am so happy and am feeling so great! My dad is going to smoke a turkey on our bbq pit! Yummy.. My mom has been talking about it all week! I hope all my other little friends out there had a great Christmas!  We will be winding down the year and I just know 2010 is going to be my best year ever!  Ho! Ho! Ho!

Love Malia

Dear Malia, 

I know this is your blog but I wanted to tell you that on this Christmas Eve as I look at the stars shining above I can only think of you. An angel brought from the heavens above delivered into my arms to take care of and love.  This will be your second Christmas!

Since the day I found out I was carrying you in my tummy a smile came across my face. I dreamed of the day we would finally meet. My love for you was just beginning. The moment I saw your beautiful sweet face my heart molded with yours. You are my sweet angel. You bring me joy every day. You have more courage and soul than anyone I have ever met. You are my teacher in so many ways. You teach me everyday what it means to be strong. You have made me wiser, more compassionate, and have truly taught me the  meaning of love.  You have brought me to my knees with worry for you but YOU always have shown ME the way.  Please continue to do so! My little angel with such a wise soul and deep brown eyes. I could stare into them forever.  

My little torito! You are so strong. You have fought and conquered so many battles in such a short time in your life! You amaze me everyday by your strength and courage! My sweet angel you are a fighter, and tan valiente! I will always stand by your side forever.

The angels were singing the day you were born, you are such a sweet blessing.You are an angel Malia. Your golden locks and porcelain face are that of nothing but an angel.  I thank God everyday for you.  To wake up beside you on Christmas day will be the best present ever. Your smile that  lights a room and melts my heart will be the most beautiful thing to behold.  

Merry Christmas my sweet baby girl…. Your mommy loves you more than you could ever possibly know. 

Love mom

November 28, 2009

At 4am the alarm went off. My mom and dad were already awake. Neither one of them could sleep so good that night but I was sleeping peacefully as finally the NG tube was out from my nose. Off we went to CIMA me still in my pyjamas. We arrived at 5am and were admitted to the hospital. We all went into the surgery room as I was getting prepped for my surgery. The anesthesiologist showed up and wanted to talk to my parents about what she had planned on giving me. After that, my mom put me in my surgery gown and the other doctors showed up as well. There was a team of four doctors and two nurses that would be helping with my g tube placement. My pediatrician Dr. Castro took me in her arms and said goodbye to my parents. My mom and dad were nervous to say the least but felt confident in the team that was looking after me.

About 45 minutes later, Dr. Navarro the pediatric surgeon came in to tell my parents that the surgery had been a success. He also said you know your daughter she woke up  kicking and wanting her mom and dad. The doctors had decided I would stay in ICU over night. Everything had been going great until I was adminsitered Valporic Acid intravenously. You see my g tube site could not be used for 24 hours and my parents were worried about me not getting my anti seizure drugs. We had been told by the neurologist that a different form of Valporic Acid was available via IV. Unfortunately my little body did not like it and I had side effects from the drug. I was very agitated and irritable. I was thrashing around my arms and head and it did not matter the amount of sedatives they were giving me as I would not calm down. 

My parents were extremely worried and so was the pediatrician. She gave me a drug called Fentanyl that hopefully would calm me down so that I could relax and get some sleep. My mom was holding me when she gave me the drug. All of a sudden my O2 level dropped from 97 to 55 in a matter of seconds. I started gasping for air. I could not breathe. My mom picked me up and put me in the crib and the doctor then took over. It was nuts. Before this there were probably 10 people working in ICU but at this time there was only one nurse around and he just did not seem to be moving fast enough. My mom was barking orders at him and telling him to get some more help. My doctor was trying to resuscitate me and was yelling for the antidote of the drug she had just given me. It was very scary. The next thing I am hearing CODE BLUE IN ICU!!!! My mom was a wreck, my dad never left my side. My mom was running around trying to find help and to her it seemed like an eternity for anyone to show up with the antidote. Now all of a sudden there were 10 people in the room and everyone was helping to save me. Whew, I started to breathe again.  

I was only to be in ICU for one night. I had to stay for three. After the Valproic incident and the drug finally left my system I started to feel better. They started to wean me off the other drugs that were in me and I had a problem with that. I was agitated and irritable again. I cried alot that day. As a matter of fact I cried from 5pm till 4:30 am… They tried everything from Morphine, to Dormicum to finally Hydro Clorate and that finally did the trick and I fell asleep at last. My parents were exhausted to say the least and me too.

The next day I was much better. Our goal was to get me out of ICU and up into a room. We finally made it upstairs and out of ICU. I was off of oxygen and the pulse monitor. I slept two nights upstairs and did very well. The nurses showed my parents how to clean my g tube site and how to feed me. They got the hang of it real quick. We finally left the hospital on December 3rd. We stayed at our same hotel and mom and I were flying out on Friday for home!!!! Dad took the ferry again and my mom and I arrived home by noon on Friday! I was so glad to be home and to tell you the truth I am doing so much better.

Thanks to all the doctors and nurses who looked out for me and from all the support from my family and friends. Love Malia

We were thinking turkey….. My mom and dad are food network fans and that is about all they watch when we are in San Jose at our hotel. So they had been talking about the turkey.  We had no plans. Our dear friend Pipa gave us a call and invited us to celebrate Thanksgiving with some friends of hers in Escazu.  What a great time we had and a wonderful dinner! Raymond and Jerry were very warm and kind people to invite us into their beautiful home!

Of course you know me, I have to stir up some kind of excitment! Everyone was settling in for dinner when my mom came to check on me and see how I was doing and noticed that my NG tube had completely come out of my nose. Yep, it could not wait to come out on Friday before the surgery it had to be today. It was late so my mom and dad decided to go back to the hotel and wait to call the doctor until the morning. Boy was I ever happy to have that out of my nose! I am a completely different person when it is not in my nose!! That night I slept for 10 hours straight! First time in months!! My parents were so happy for me. We all finally had a good nights sleep.

The next morning they called my doc and she said to come in and I would have to have a temporary one placed until the surgery the following day.  We went to ER and it did not go so well. I was so angry at everyone for putting another tube in my nose. Will they just leave my nose alone!!!!!! After three tries they finally got in but not without me kicking and screaming the entire time.

We went back to the hotel and I was miserable. I could not sleep and cried alot. I told you I hate the NG Tube!!! Fortunately for me, my parents were able to take the NG tube out at 6pm since I had to fast before my surgery! I was so happy to have it out again. I slept like a champ again that night and I needed to as tomorrow is the big day!

Sunday November 22, 2009

Mom and I took the afternoon flight to San Jose. Dad took the ferry and drove. Tomorrow morning I will have a PH study for acid reflux. What you might say is that? Well, they are going to stick yet another tube down my nose along side the tube that is already in my nose for feeding me.  I have to keep this tube in my nose for 24 hours. It will measure if and how much acid reflux I might have. My Ped GI doctor is the chief of GI at the Children’s hospital. So I had to go back to that hospital to get the probe put in my nose. It went ok. It did not hurt too bad and his assistant was good at placing it. Needless to say, I did not sleep that well… Next morning at 6:30 am we went back to the Children’s hospital to have the probe taken out and now I had to do an Endoscopy procedure. 

 This involved me having to be sedated. The procedure consisted of a tiny camera going down my esphogaus and looking around in my stomach. They were looking to see if my esophogaus might have been burned from reflux, the positioning of my colon and my stomach and basically just to see how it all looked inside of me.  It was a fast procedure about thirty minutes. My mom and dad were waiting outside for me. They took me to the recuperation room. I woke up about an hour later.

After the doctor and nurse checked me all over I was free to go with my parents. The nurse had just taken my IV line out when the doctor came back in and told my mom and dad that he needed bloodwork from me for the following days surgery. This was not good news as I am very very hard to draw blood from. My veins are tiny and thin and it is not easy to stick me! The doctor had told my parents that we needed to have the surgery done at the Children’s Hospital and he had scheduled it for 6:30 am the next morning. The private hospital did not have small enough equipment to do the procedure on me but the Children’s hospital did. My parents really wanted to do it at the private hospital. They wanted to be able to be together with me in my room. Well, we are now on a new mission. We have to draw blood.  We went to a lab that my mom always takes me and the lady there does an excellent job on finding my good vein. This time there was no blood coming out fast enough as my veins had already been poked so they call that a collapsed vein. Maureen told my mom she did not feel right sticking me anymore. So we gave up and went to the hotel.

My mom called the doctor to tell him we had no luck and if we could reschedule the surgery. He said no he could not reschedule and that we had to get the blood to try my other arm. So……….. my mom called Maureen and paid for her to come to our hotel room and try to draw blood from me again.  She tried the other arm, my wrist, and my foot. No luck. Bummer for me as this hurt alot! I was really tired of people sticking me with needles. My mom and dad were getting upset too. So Maureen tells us the only way we are going to get blood is by sticking me in my femoral artery and that only a doctor can do this to me. Well it is 5pm my mom walks outside and the sky open up with rain and it begins to pour down. My mom at that moment talked to my dad and decided that there were too many signs telling us not to do the surgery the following day. So my mom called the doctor and cancelled. I was happy about that as I already had a couple of hard days.

It worked out to my advantage! My mom kept calling the doctors at the private hospital and asked them to please try and find the right equipment small enough for me. There was only one pediatric machine in the country and it was available!! My mom was able to organize my surgery for Saturday morning at 6am. Now I get a few days to rest up before my surgery! I cant wait to get this tube out of my nose!!

Sunday November 15th, 2009

One week before our depature date for my studies and gtube surgery my NG tube decided to clog. My mom called the doc and she said to use Coke to unclog it. We tried that and hey it worked! Then two days later it happened again and it did not matter how much Coke we used it would not unclog…. So dad took mom and I to the airport the next morning and we went straight to the hospital to change the tube. I really hate that tube. You can not even imagine how uncomfortable it makes me. When I have to have a new one put in it is even worse. I did not have anything in my stomach so the doctor would not give me a sedative so I was wide awake when he put the new tube in my nose. I fought him very well. I even tried covering my nose with my hand.  He finally got it in. Mom and I went to the hotel I did not sleep very well. I never do with this tube in my nose. The next morning we flew home. Only 5 more days before we fly back in for my upper GI studies and g tube surgery!