Archive for November, 2009

Happy Thanksgiving!

Monday, November 30th, 2009

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!

Studies and more studies

Monday, November 30th, 2009

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!!

NG TUBE Problems!

Sunday, November 29th, 2009

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!

Home at last!

Saturday, November 14th, 2009
Finally relaxed!

Finally relaxed!

Finally out of the hospital!

Saturday, November 14th, 2009
I am all smiles today!!! Me and mom at Pipa's!

I am all smiles today!!! Me and mom at Pipa's!

Rebecca my Respiratory Therapist!

Saturday, November 14th, 2009
She was always good to me!

She was always good to me!

Me in the hospital!

Saturday, November 14th, 2009
Praying to get outta of here!

Praying to get outta of here!

Back to the Hospital!!

Friday, November 13th, 2009

My mom and I flew home on  Tuesday, September 29th. My dad did not want us to drive for 5 hours in the car so we went ahead on the small plane. In one hour I was home. It was so great to be back home. I had missed my bed and my dogs! We finally made it!!! The first night I did pretty good. By Wednesday night I was starting to cough again and by Thursday I had a fever. I was not feeling good again. I cried all night on Thursday and could not sleep. My mom put me in the stroller at 4 am to see if a ride would calm me down and nothing helped. That morning my mom called the doc and she suggested that we go ahead and come back in for a check up.

Thank goodness my parents were smart enough to buy all the necessary equipment for my respiratory problems. We bought a nebulizer, oxygen meter, aspirator and a tank of oxygen. They were able to give me a nebulizer mask before we headed to the airport. My oxygen level was reading okay but my heart rate was high 150. They decided to give me oxygen and we loaded up in the car and headed out. My dad was planning on dropping us off and me and mom were going to go in alone. My parents did not think that I was too terribly sick. By the time we arrived to the airport I was not looking so good. I started to blink my eyes and jerk my body. My parents thought it might be a seizure. What was really happening was that I was going into shock. My heart rate at this time is now 170. My dad now is coming with us and we boarded the small plane. We were on the plane for ten minutes when the pilots boarded and told us that they could not take me with the oxygen. They told my parents that if they turned off the oxygen it would be ok but with oxygen no way. My parents did not like the sound of that as right now I am not doing so well and the only thing helping me is the oxygen. We had to get off the plane! Now what do we do? 

 At this time my mom is on the phone with my pediatrician and she is trying to locate the pilot of the  private hospital. She is having a dificult time in locating him so my mom had called a good friend of the family Joe. He arranged for us to charter a private plane! They said they would be there in an hour. Obviously time is of the essence right now. An hour later a three seater  plane showed up and we boarded with my oxygen on. I was very restless and agitated by now. We had an ambulance waiting for us at the airport. We were in San Jose in 25 minutes and at the hospital in another 30 minutes.  The ambulance driver was going very fast. You see in Costa Rica, they dont always pull over for ambulances. As a matter of fact, the driver continually honked his horn to get people to move. Once we arrived at the toll booth there was a motorcycle in front of us and the driver was honking and yelling at the lady to raise the bar. She told him we had to wait our turn and pay the toll. Can you believe it? I thought for sure my dad would snap! It was crazy! By the time we arrived to the emergency room my heart rate was at 210 and I was in cardiac arrest and septic shock.  There was so much going on people were running and acting very fast to save me. Everyone was very very worried for me. They decided that they needed to put me on a ventilator as I was having trouble breathing on my own. After a hour I was stabilized and moved to Intensive Care.

I had Pnuemonia again but this time in both lungs and much worse than the time before. Unfortunately I picked up a micro organism at the Children’s hospital the week before. I should have stayed on my antibiotics. Now that I had another bacteria and reoccuring pneumonia I had to stay in ICU  for five days. It took alot of Morphine to calm me down.  I kept surprising everyone because I would wake up and want to yank on the hoses that were in me. The doctor could not believe I kept waking up and  he adminsitered more sedatives. They gave me the nickname of Little Bull! It seemed like forever that we were in Intensive Care. Now that we were at CIMA, the private hospital, my mom and dad could stay with me in the same room. The  doctors and nurses were so good to me. Everyone was worried for me. We finally moved out of Intensive care and into a private room. I stayed another 13 days in the hospital. I had respiratory therapy sometimes three times a day. I had some of the best therapists! Jose Miguel, Rebecca and Janice were some of my favorites. They helped me breathe better.

I finally was released from the hospital on October 18th. In order to be relased they sent me home with a NG tube. You probably are thinking what in the world is that? Well it is a small tube that runs through my nose and deep down into my tummy. My parents feed me with a feeding pump. They use pediasure which has all the nutrients I need.  The doctors are worried that I might be aspirating my food. This means that when I swallow sometimes it does not go down the right pipe and ends up in my lungs. Once that happens bacteria forms and I can get pnuemonia. My parents were worried about taking me all the way home so our dear friend Pipa let us stay at her house in Escazu for the next two weeks. I continued to get respiratory treatments daily. My friends from the hospital would come see me at Pipa’s! We finally were given the okay to go all the way home. My xrays and blood work turned out good and the doctor said I could travel. So mom and I are off again to the airport and dad is driving home. We left on Halloween and I was looking pretty cute in my orange and white kitty cat shirt! Since being home I am so much better. The air here is cleaner. The birds are singing and the monkeys back to howling. My dogs were so happy to see us!!! I am doing much better and am smiling alot! I am happy to be home! We are staying home for a month and then on the 22nd of November we go back to San Jose to run some studies on how well I eat. I am probably going to have to have a gtube. This is where a tube is inserted into my tummy and my mom and dad will feed me there. It is not to say I am giving up on eating! It just is a way to make sure that I am getting all my nutrients and medicine without the fear of me aspirating food into my lungs all the time. I look forward to getting this hose removed from my nose as it bugs me. However I am a strong girl. The doctors could not believe how fast I recuperated! I still live up to my name of Little Bull and plan to do so for a very long time! Thanks to all of you for checking in on me and all your prayers! I will continue to keep you posted on my next adventure back to San Jose! Love Malia

Going Home!

Saturday, November 7th, 2009

What a trip this has been. By the time I land in Costa Rica I will have been on 14 different airplanes, 3 ferries, and 2 buses! I have been such a  great traveller besides for the minor little episode from Vancouver to Houston! ;) We left very early Sunday morning and arrived to San Jose by noon. I slept almost the entire plane ride. Our plan was to stay the night in San Jose and head home Monday morning for Delicias.

That night I started to not feel so good. I had a really bad cough and a little fever. My mom and dad were worried as I kept coughing all night and did not want to sleep. The next day they took me in for a xray of my lungs. My pediatrician told me that I had a small amount of fluid in my left lung. She felt like we could treat it at home. She sent me back to the hotel with antibiotics and sent over a respiratory therapist to help with my coughing and fluid in my lungs. He arrived that night around 8pm. He checked my saturation level of oxygen and it was pretty low. He had to use this machine to suck out stuff from my lungs. I did not like that at all. It was very uncomfortable for me. He left his oxygen meter with my mom and dad and said if my oxygen dropped below 80 to take me to the emergency room. Not even 15 minutes after he left my mom and dad checked my saturation and it was at 75. So we were off to the emergency room. At this time we did not know which hospital to go to.

The Children’s Hospital has a great reputation and the private hospital where we see my pediatrician she was not going to be there. As a matter of fact, all the pediatricians were off to a conference in Peru for a week. So not having our regular doctor at CIMA we decided to go the The Children’s Hospital as I have another pediatrician that sees me there sometimes. The Children’s Hospital would not let my dad come in with my mom. So my dad had to drop off us at emergency my parents did not like this one bit, but those were the rules. Once in they stablized me with oxygen and then my mom and I went to one of the medical wings and we shared a room with three other moms and babies who were sick with respiratory problems. In the room was a single metal chair that my mom had to sit in that night. My dad came to see me the next day and my mom went to the hotel to catch a few hours of sleep.. I had to stay there for five days.  My dad stayed with me during the day and my mom at night. I seemed to always get worse at night. Many times my mom and dad were afraid for me.  My mom never slept once during the five nights we were there. She was keeping her eagle eye on me at all times! There was another nice mom in the room and they exchanged their fears about us. The doctors on Friday told us we could go home. They told my parents that I did not need to take anymore antibiotics that what I had was viral. They sent me home with a clean bill of health. We hung around over the weekend to see my pediatrician at CIMA as she was getting back from Peru on Sunday. She wanted to check me over one time before us heading home. She listened to my lungs and said all was well. She did not like the fact they had taken me off the antibiotics but it was too late as I had been off them for more than 48 hours. We all agreed that hopefully nothing would go wrong and I would only get better.