Malia Moore

February 21st 2011

My week at CIMA is a trying one. It is taking a long time for me to feel better. I am still uncomfortable from the stomach pains. My doctor decides that he wants to check me inside and out before sending me home again. He suggests that Jose come and aspirate me and get a sample from my lungs and my throat. This has to be done at 6am. It is not a very nice way to be woken up, but since it is Jose I forgive him. He is very fast and is in and out of my nose within 5 minutes. The test results come back showing that I have RSV. Can you believe it? RSV? Are you kidding me? Did I not just have influenza B? My mom and grandma are freaking out. They go on the internet and read about RSV. I am subconsciously telling them not to do it. Don’t read on the internet about it, it will only make you panic worse. They did not get my mental message and read it anyway. Yep they are panicking.  My dad is emailing and calling all the time. He too reads too much on the internet!  He is worrying as much as they are! Geez you guys need to relax!

It is okay though, I handled the influenza I can handle the RSV. I never get a fever, and I have only a little bit of a cough. I manage ok with the RSV. I am not letting this bring me down. I stay positive and mom and grandma snap out of it and we are back on the road of conquering yet another virus. RSV can be deadly to someone like me. It could be a mild case or a severe one and can cause pnuemonia in especially kids like me with a low immune system. Guess what? I had a mild case! Yeah! The doc had ordered respiratory therapy for me two times a day. I really like the therapy part. I like when they thump on my back and sides. Mom likes it too as she always calls them in around midnight so that they can thump me to sleep! Rebecca and Melanie do a great job at putting me to sleep!

One  night mom went out to the food court to get a pizza for her and grandma. Me and grandma were hanging out together. Sometimes I have apnea and stop breathing at times. I decided to pull that on grandma to see if she was on her toes. My O2 dropped down a bit and when mom came back with the pizza neither I nor grandma was in the room.  My mom did not know what to think and walked out into the hall way to see grandma carrying me and asking the doctors for help! About 6 people came back into my room and checked me out and I was breathing fine and my O2 back up to 95%. Sorry about that grandma! Did not mean to scare you like that false alarm! Oops! Grandma told my mom by God nothing was going to happen to me on her watch! Thanks Grandma even though you scared mom to death!

The week has passed and my doc says on Thursday if my blood tests and lung analysis comes back good we can go home on Friday. The excitement is in the air. Friday morning moml and grandma celebrate with their departing breakfast and order up some pancakes! Mom later is at the nurses desk asking for the results. My tests came back good for my tummy and it is showing there are hardly any fungi left in my stools nor blood. Now mom ask for the lung test. It shows positive for a bacteria. Can I just say that even though mom tried really hard to hide it on her face she was crushed. She came into tell grandma that a bacteria has showed up in my lungs. They do it again, and get on the internet and get depressed even more. Now I am thinking to myself why are you guys worrying so much? Do I have a fever? Dont I look good? Aren’t my spirits better? If I had a bacteria in my lung  wouldn’t I be exactly the opposite.

Dr. Navarro comes into to tell us not to panic just yet. That he is calling in a infectologist to come and see me. There goes us going home today. The infectologist does not come to see me until 7:30 that night. Needless to say there was alot of pacing and worried looking faces in the room until he showed up. Dr. Ulloa, the infectologist, inspects me and says I look good. He saw me at Children’s hospital when I was grey and looking really bad so he thought I looked great! He said that what has happened is that the bacteria has colonized in my lungs. This can happen when someone is in ICU for a long time like me and having been intubated for a month I was a prime candidate for colonization. I am not 100% sure what this means for me but he says not to worry and to go home. I have no fever, I look good, and I am breathing great!

Mom is calling again for the ambulance airplane. I dont know when I will be able to fly our puddle jumper again. My lungs have alot of recuperating to do. We are scheduled to depart at 11am. They come to get me and off we go in the ambulance and to the airport. This time we are not in a jet but the pilot has said he will be flying very low for me and the first thing they do is hook me up to oxygen. Down the runway we go up into the air. I am doing fine. We are flying so low over the water it is almost like you can touch it. It is beautiful up here. I do live in such a pretty country. Tough to get around in, but beautiful to live in. Dad is waiting for us in Tambor. They let him drive on the runway. The airplane door opens the docs pass me off to mom and I am now in my car seat, air conditioner flowing, and headed back home!! YEAH!!!!!!!

I am back home again!! I feel better this time around. Hopefully I am here for a very long time.

Love Malia

February 20th, 2011

The first thing the doctor did when I arrived at CIMA was to take a picture of my tummy. We also did an ultrasound on my tummy  to make sure everything was looking okay inside. The ultrasound came back fine but the xray showed that my stomach was nothing but a bunch of gas. Turns out that my gastritis I had before I left the hospital has not gotten any better. My blood tests come back showing that I have a fungus in my stomach. Since I have been on so many different antibiotics all the good bacteria in my tummy has been over taken by the bad bacteria and is wreaking havoc on my stomach! The first thing the doc does is put me on another antibiotic to try and kill the bad bacteria. I always take Children’s Primadolphilus when I am home but when I was at the Children’s Hospital my mom was not allowed to give it to me since it was not from their pharmacy and noone seemed to think I should be taking it. Who knows if it would have helped to keep me from having this problem. Right now I am taking loads of good bacteria to try and get my stomach stabilized. My good mood from ealier in the day has disappeared. We get transferred back up to a room on the second floor. Mom was not thrilled to have to see all the nurses again! We were so hoping not to have to be back here for a very long time. I lasted three days! Ugh.

On a good note, my respiratory system is working well.

Malia

February 18th 2011

My first night at home I slept between my mom and dad. What a wonderful feeling to be snuggled next to them and not sleeping alone in a hospital bed. I slept really good and woke up in pretty good spirits.  We all slept in late and had a late breakfast and took the day slow and easy. I was happy all day. We went for a stroll around the property, hung out in the hammock and just took in being back at home. It is sure hot here though! Mid February in Delicias is not at all like it is in San Jose. I will adjust though I am use to this heat!

On Saturday I am not having such a good day. I am crying alot. Everytime I wake up I cry. I am not feeling so good again. My tummy is making all kinds of noises and I am having bad stomach pains. Mom, dad, and grandma are trying everything to keep me happy but even though they put forth a good effort nothing is making me happy. I continue to pretty much cry on and off all day. Later that night my grandpa came over and we decided to let him have a try at keeping me calm. He did a good job on holding me in the rocking chair although I am just not comfortable. I am not sleeping well either. I don’t have such a good night and wake up that morning at 3am crying. Mom decides at 4:30am to take me in my stroller and try and calm me down. That worked for a while, but she could not stop strolling me or I would start crying again. At this time my parents are on the phone with Jose our friend and my respiratory therapist. Mom is asking who is in the ER. We are starting to think that I may have to take another trip back to the hospital.

On Sunday my attitude does not change much if anything I am crying more. As I have heard my parents say before there is nothing worse than a baby that is crying all the time, it tests the patience of even a saint. I finally take a nap around 1pm and do not wake up till 4pm. Everyone is thinking my long nap will have done me good and that I wont be crying as much. Well that did not happen I woke up crying and mad. Now it is 5pm and getting dark and everyone is getting very concerned. Mom is back on the phone again and this time  asking about chartering a plane from the hospital to take me back. We talked with Dr. Zuniga a great doc and friend of mine and he says he can come get us in a helicopter. Planes can’t fly at night into Tambor as there are no lights on the runway. The helicopter would have to land at the local soccer field in Cobano and charge a small fee of $4,500 to fly at night. Dr. Zuniga tells my parents to wait it out and fly first thing in the morning.

We schedule the plane to meet us at Tambor at 6:30am. I sleep okay thru the night. Mom and grandma have talked my dad into staying home and taking care of our nursery. We have had lots of clients waiting for our return. Dad does not want to stay but mom and grandma insist. Looks like this is going be a girl’s trip. Dad takes us to the runway strip and there waiting for us is a jet. Since I can’t fly in an unpressurized cabin the jet was the best choice. Jose gets off the plane in his jump suit, looking quite dapper and comes over to get me. They put me in the plane on a gurney. This is a medical airplane and is equipped with everything we would need in case we run into problems. Of course this morning I am in a great mood and not crying at all. My mom and grandma are looking at me like who is this kid? Where is the crying baby? The ride in was beautiful. Grandma was able to sit up front with the pilot and be copilot! Mom was in the back with me, Jose and another doctor. We were in San Jose in twenty minutes. They had an ambulance waiting for me. We had a fast ride to the hospital and there everyone was waiting for me again at the emergency room. I can only hope this is a quick trip to the hospital and nothing too serious!

Love Malia

February 17th, 2011

It took me 11 days to get over the flu. Now after 51 days at two different hospitals I am finally getting the okay to go home. We left CIMA at 3pm and headed to the hotel to spend one night before heading back home!  I am feeling better, breathing great and my grandma and I have a plane ticket booked on Sansa to get me home fast. I was a little cranky the past few days but then hey who would not be little grumpy after all I have been through! My dad is driving home and taking an early ferry to be at home when we arrive!! I cant believe this is actually happening. Is it true? YEAH!! I get to go home!!! 🙂

Grandma Marg and I checked out of the hotel and headed to the airport. We were flying our local puddle jumper that mom and I have always taken together. Once we  board the plane I  fall asleep. I am really tired right now and sleeping in my grandma’s arms. We start to go down the run way, my mom looks in fear at my grandma and says “are we making the right choice?” “Should I tell the pilot to stop the plane?” Obviously mom is having her doubts about leaving the city and going back out to the jungle where we live.

Well grandma and mom decide it is too late we are going home so up in the air we went. The next thing you now I go into an even deeper sleep. I am turning a pale white color. Mom is pushing on my toes to see if there is color in my feet. There is no color. My mom whips out the oxygen meter and my oxygen before going up in the air was at 95% and now it is at 72%. This is the time when grandma and mom really begin to panic. I mean what do we do? I have no oxygen up there. My lungs are working on overtime to pump air into me. I just want to sleep. Thank the Lord, that the flight is only 25 minutes long. Yes I was without a good supply of oxygen for that long. My mom and grandma are just as pale as me. After going down my O2 has gone back up into the 80’s. Paw Paw Brown is waiting to pick us up at the airport.  We get in the car with him only to find out the airconditioner in his car is broken. I mean it is really hot and dusty here right now and a major climate change for me after being in San Jose for so long. Mom just wants to get me home and get me on some oxygen. Bump bump bump goes the ride home mom and me skin to skin and sweating!

Luisa, and Bismark are home to greet us and of course Selva and Indio were thrilled to see us! I wish I was feeling a little better but I am exhausted. Dad just called mom and he is 15 minutes from home with the oxygen machine. Dad gets home rushes upstairs and I finally begin to get a good flow of oxygen in me. My O2 goes back up into the 90’s and right now I just need to take a good nap and breathe in the O2. I sleep for a few more hours and then we tested my oxygen on my own and I am now breathing good again. Whew, that was a close call. Would have been a good idea for one of the docs to mention to me that flying in an unpressurized plane at this moment was not a good idea. Nonetheless I am home and am so thankful for that! 

Love Malia

February 6th 2011

February 5th 2011

Late that afternoon, I began to have a fever. I also began to have seizures again. My fever kept going up. Dra. Castro was worried and took another blood count on me and it turns out my white blood cell count is very high. Having a high blood cell count and fever means infection not good. Dra. Castro was very worried that I had picked up another bacteria from the Children’s hosptial. Oh no, tell me this is not happening again. We took a swab from my nose and throat as well. I have come so far to be sick again! Dra.Castro immediately decided that I needed to have another catether put into my leg so that she could start me on another round of antibiotics. There really was no time to be spared. She called another doctor to do the surgery on me. Since I have had catethers in both my legs my veins have become hard and are becoming used up. They are worried they are going to have a hard time finding a vein that will last so that they can administer another round of drugs in me.

My parents and grandma are just sick about this and me too. I was doing so good! At 6pm I was rolled down to the operating room. My parents are so worried about me having to be sedated. I do not do well with sedation. It always creates a ton of secretions in me and I have a hard time managing my own let alone a drug that creates more of them. My parents are petrified that I will have to be intubated again. A hour a later I came out of surgery. They were able to find a vein in my leg. I did well during surgery.

When the drugs began to wear off something different began to happen to me. I was highly irritated. My mom tried to brush my hair out of my face and I tried to bite her. I was making all kinds of wierd growling sounds. My parents had never heard me do this before and I did not understand why I was feeling like this. I wanted to growl and bite everyone that tried to touch me. Well wouldn’t you be angry if you had to go thru what I just went through? Ugh…. I am so tired of all this. Immeditately we started the drip of antibiotics again. I still have fever. I do not feel very well at all.

That night when we got to the room I sounded terrible. I had so many secretions. Rebecca my respiratory therapist came to the room to aspirate me. She took out alot of gunk from my lungs and throat. My mom picked me up and was cuddling me when I started all over again to fill up with secretions. We had to call Rebecca again. In the end she had to aspirate me six times until she got everything out of me. It was not a pretty sight. I was sitting on my mom’s lap while she was aspirating me. I hate to be aspirated. It is the most horrible feeling in the world, but then I would rather be aspirated then to have another tube stuck in my throat. I managed okay, and finally at 2am was able to go to sleep and get some rest. I am exhausted.

Malia

February 4th 2011,

At 1pm they came to get me! My parents are so excited they cant sit still. I finally got to have the catether taken out of my leg. I now only have one needle in my arm just in case of an emergency. I am headed to my own private room with all my friends waiting for me at CIMA. I am famous there as well! The doctor who came to get me at CIMA was the same doctor who picked me up 1.5 years ago when I flew in at the airport with pneumonia. He remebered me very well! They brought a gurney up to ICU and transfered me onto that bed. I am being rolled out of ICU. Is this really happening? Are we really leaving here?

We said goodbye to the friends we had made. Some of the docs were joking that they were having a small party after our depature since my mom had been driving everyone crazy! Ha! Can you belive they were ready to see us go! 🙂 Well we were sure ready to go! The ambulance ride went smoothly, thankfully this driver knew how to get us to CIMA and did not get us lost on the way!

We showed up to the emergency room at CIMA. The first thing they did was take a picture of my lungs. They have already dropped my oxygen down to 1.5 liters. I am breathing well and have good color in my face. Dra. Castro, my pediatrician was so happy to see me and thought I looked great. We started giving me some food right away and a few hours earlier I was upstairs in my room with a view looking at the mountains of Escazu. This is a monumental day. 

That night I slept well. My dad and grandma went to stay at my friend’s Krystal house. She is letting us use it for the weekend while she is gone so we can wash some clothes. She is so sweet. My mom stayed with me that night and she was so happy to order room service, watch TV, and talk on the phone in the room right beside me! What a change of atmosphere.  We are all so glad to be here. Hopefully I will have another week here to recuperate and then I just might be able to get home!

Love Malia

February 2nd 2011

I am finally down to 2.5 liters of oxygen. The doctors are saying that I am better and that I am ready to be moved out of ICU. However, they do not believe that I will be able to go home without O2. At the Children’s hospital, when you move out of ICU you go down to another floor where things are not as controlled as in ICU. Instead of being in a room with 5 or 6 kids I will more likely be in a room with more. I will not have my own nurse and my parents will be doing most of the work. My parents are worried about me being in a room full of children that are all sick and am worried about me catching something else. It has been really hard for me to ward off bacterias and we do not want to risk me catching something again.  We are talking to my pediatrician Dra. Castro at CIMA (the private hospital) to get me transferred out of here and into my own private room so that I can recover.

In order to be approved to go home with oxygen, the Children’s hosptial has to send out a social worker to my home and approve of our living arrangement. One of the nurses told me that it would take more than a week for the approval to get O2 at home. We do not want to wait a week longer and have decided that if we need to take O2 home we will just rent it. The docs are saying that since my lungs have been so severely damaged that it will probably take months for me to be able to breathe on my own again. We shall see.

Love Malia

At The children’s hospital,

January 31st 2011

Today we have decided to try a new type of respiratory therapy on me. In spanish vest means Chaleco.  So the head of the respiratory department came in with this vest that is hooked up to a machine and hose. The hose inflates my vest and the he turns the machine on and I start to shake and groove like in a washing machine! In all honestly, I like it! Everyone says here comes Malia’s dance when they bring in the vest. I feel more like I am dancing a merengue than anything else because I am really moving!

The idea behind the vest is that is shakes up any secretions I might have in my lungs and after we are through “dancing” I normally give a good cough! Coughing helps bring up anything that might be in my lungs! Remember at one time, they all said I was probably  not going to cough or swallow again! Well I am doing both! The vest  is working well and I like the way it makes me feel. I am getting better each day. I have been off drugs now for a week and am feeling good again and I am finally begining to eat more! I sure hope I can get out of here soon!

Love Malia