Malia Moore

Monday morning everyone was bustling around. I was happy that my favorite crew of nurses was coming into work this morning. We drew blood to test my levels in my seizure medication and a complete blood count and many other tests to evaluate my progress in healing. My tests showed that my kidney is functioning well. I am having no problem whatsoever with peeing and my complete blood count back is almost normal as well as my Protein C reactive level had gone down below 10 which is exactly where it needs to be! The only problem was that my valporic acid seizure medication came back at 4.4 %. Mom could not believe it. No way was it that low. We had suspected that it would drop but to be at 4 out of 100 well that was unheard of! Mom called Dr. Luna one of my neurologists and he said that it was absolutely impossible that the levels could be that low. Normally I range around 75 or 80 %. We normally tests levels every three months to determine how the valporic acid could be affecting my liver. It is very important to keep an eye on that especially if the numbers are higher than a 100.

Anyway he insisted that we have another test that surely the laboratory messed up! We did and the results had dropped a point lower in a day. Turns out it was not the lab’s fault. The problem here is that the doc could not believe that the antibiotic I was taking for my kidney infection could lower my numbers in such a manner. My mom kept telling him you don’t know Malia well enough to say that it is impossible for this to happen. Typically if the medical books say one thing I am going to do the exact opposite. Later that night I had another long seizure. Finally Dr. Luna gave mom an answer at least and told her to double my dosage on the seizure med for the next two days to try and raise the levels in my blood faster. I sure hope we can get this under control and fast!

Unfortunately on Wednesday I had to have my site cleaned again and a new patch on. Dra. Castro said she wanted it changed even though I was going to have the central line removed on Friday. She was worried about possible infection and wanted to make sure to keep it clean. Of course, I hate this as it hurts everytime they do it as my skin is so sensitive! I am a tough girl though and did not cry too much! 😉 Vivi my nurse always is so gentle with me.

I am definitely feeling better and they are sending me down to do an ultra sound again to see if the infection has cleared up. I sure hope so! At 11am I had my exam and the ultra sound showed that infection had gone away! Yeah!!! This was great news! Now I only have to stay here till Saturday and my last day of antibiotics are on Thursday.

Irene was working out with me everyday in my bed and Sofia came two times to visit me as well and help out. I am tired but doing well. Dra. Castro came in to see me and was so happy about my ultrasound. Now we just have a few more tests to run and soon we will be packing to go home this Saturday! On Friday they drew blood and then later Dra. Castro and one of the nurses came in and removed my line. This was painful. I cried a lot when they were taking out the stitches. After it was removed from my neck I felt the biggest relief. It is true we are really getting closer to going home.

Love Malia

Later that night I had another long seizure.

Passing time here at CIMA is not the easiest thing to do. I miss home. My bed, my doggies, Luisa, Bismark my buddy Genesis and most of all my dad. I sure hope this week goes by fast. I am sleeping good at night and some days sleep much more than others. Just depends. I have so many different medications in me right now some have a stronger effect on me than others. I need to get out and get some fresh air. This hospital air can be suffocating. Hopefully we will get to go outside this week.

On Monday Sofia and Irene came to work with me. We had a fun time. Sofia cleaned and set up my water tank for me! We are basically camping here at this hospital as we have everything but the kitchen sink. Mom ran out in the afternoon and did some shopping for me, and me and the girls had a nice time together.

On Tuesday Dra.Arguedas an immunologist from the Children’s Hospital came by to see me. She asked my mom a ton of questions and stayed over an hour. She was very thorough. She will be taking my blood next Tuesday and running some more tests on me. Since I have passed all the other tests, she seems to think it could be that the muscle in my bladder is not strong. There is a test we can do for that but at a later point in time. It is called urodynamics. It has truly been a guessing game on why I keep getting these infections. Hopefully before I leave we will have some answers. Irene had come by to work out with me. I am getting to know her better. She is very sweet to me.

On Wednesday I was sent down to have another ultra sound. If the doctor could no longer see the infection in my kidney I would possibly only need to take ten days of antibiotics. We went down to the ultra sound room and Dr. Ramirez examined me and he found that the infection site was getting smaller but that it was still there. One good thing was that it had not abscessed. Everyone was very concerned about that. So even though it was not totally gone at least nothing worse had happened to me. The hope of going home soon has now gone. We will for sure be here for at least 15 days. After my ultra sound Irene came and hung out with me and mom and we worked out together. You would think these ladies would give me a break but no,,, they keep me going strong sick or not. Today I held my breath a few times (absent seizure) and then later when going to sleep I began to have a partial complex seizures where only one side of my body moves in a consistent direction. Don’t know why the seizures have decided to kick in now and not when I had such a high temperature.

On Thursday my mom decided we needed to go on an adventure as Dra. Castro said I needed to get out and get some fresh air. I have been grinding my teeth a lot lately and this is normally because I am stressed about something, and personally I am stressed from being in this closed in room! So since the nurse’s assistant was busy mom decided we needed to just go on out by ourselves. Since I wear street clothes most of the time and not a gown we had no problem passing right by security. Nobody noticed the big patch on my neck where my central line is with two catheters hanging off the side! Irene, Sofia me and mom went to Avenida Escazu. It is a five minute walk from the hospital. It is a very upscale place with many nice stores and restaurants plus there is a really cool kids park there too. It was a warm breezy day and wow what a great feeling to feel the sun on my legs. We rolled up my pants and I just took it all in…. love the way everything smells and I was looking around everything. Once in the mall mom decided to get Mc D’s french fries for the girls. We hung out for a bit and then headed back to the hospital. When we came in the front door to go up the elevator the security guard wanted to see id’s to go up but mom said I was a patient here we did not need to leave identification. The guard asked where is the nurse’s assistant you can not be out on your own? Mom was quick on her feet and told the guard that the assistant was picking me up something in the pharmacy. He liked that answer and up we went to my room! What a great excursion with a little bit of excitement too we almost got in trouble but didn’t!!! 🙂 Unfortunately, I managed to have a few more seizures today as well!

Friday is a great day because my dad is coming to see us. He is taking the bus in and spending the weekend with us. I cant wait to see him! He will get in late but it will not matter as I will know when he walks in the room. Dad showed up around 9:30 pm, he could not help himself and had to smother me in kisses. It is great to see him. He and mom had some dinner together and I fell back asleep. Later that night dad was up checking on me and changed my diaper. I woke up but in a very different way my legs and arms were flailing around. At first dad just thought I was stretching but then it continued over and over the same movement on the same side of my body. Then dad said to mom wake up and take a look at me and sure enough I am having another seizure. This went on for 15 minutes when my parents decided it was time to pull out the diazapam. That is my rescue med. If I get into trouble with a seizure this helps me to stop seizing. The drug did help a bit but I was still awake and even though I was not seizing like before I was still seizing. Not good. Mom went to the nurses station and asked for her to have Dr. Zuniga the ER doc to come and evaluate me. My seizure was going on now for 40 minutes by the time Dr. Zuniga arrived. I am trying to sleep but these electrical jolts that are going on in my head will not let me be. Dr.Zuniga came in and now he has decided that since the Diazapam (Valium) is not working that he shall give me another drug in my central line so it will enter my blood stream faster and hopefully get me to quit. By the time the nurse came in with the drug my little body finally began to be still. I was tired. Seizures take all my energy. It was now 4:30 am and we had all been up since about 2:30 am. They decided not to give me the other drug. Mom and I slept together and dad kept a close eye on us. Me and mom were so happy that dad was there during all this. It is scary for us all when this happens.

Saturday morning was as if nothing had happened. I was in good spirits just extremely tired like mom and dad. It had been a long night. Mom started thinking about why all of a sudden my seizures had kicked in so heavily. Usually I have seizures at the begining of an infection. Normally a high temperature and infection will bring them on but this time I did not seize during that time but rather when I was actually more stable and with no temperature. My parents thought it to be extremely odd and when mom began to research a little further into the antibiotic she found out that Meronpem and Valporic Acid do not mix so well together. Matter of fact when taken together the antibiotic interacts and lowers the amount of the Valporic Acid. Not good as Valporic Acid is what I take for my seizures. No wonder I have been having so many.

Later that afternoon, we went for a stroll to Avenida Escazu with Andrea the nurse’s assistant. It was nice outside but very windy. Mom bought everyone chocolate and we came back to the hospital wind blown but happy that we had all been outside. My dad is leaving tomorrow. He said he promised to come back next weekend. I am sure hoping by next weekend we will be on our way out the door and headed home to Delicias. I cant wait to see my dad again. We are going to miss him.

On Sunday since the nurse’s staff was so busy they allowed us to go outside by ourselves even though we had already pulled that one off before it was nice to have permission and not worry about being caught. We had a nice stroll before dad had to leave to go home. Dad took a cab to the bus station and mom and I were sad to see him go but hopefully this week will fly by and we will all be together again.

Love Malia

My urine culture came back and I have two different types of bacteria. The one that I always have E Coli and a new one called Klebsiella Pnuemoniae. E coli is usually at fault for 90% of urinary tract infections. Klebsiella is a bacteria that we carry on our bodies all the time. I should have a stronger defense system to ward off this bacteria from causing me harm. Dr. Castro has called my new urologist. We at first thought the bacteria was going to be a Pseudomona. These bacterias are external bacterias and normally come from water. The urologist was suspecting I might be getting my urinary tract infections from my pool. My parents did not believe this because my dad and uncle Bismark are always cleaning our pool and keeping the levels correct with the right chemicals. Also me and my parents are the only ones who swim in it. The Klebsiella is an internal bacteria meaning I did not contact either of these bacterias from an outside source rather they are the bacterias that I normally carry in my body. Again, why is my defense system so low?

My test results have come back. Good news is the bacteria Klebsiella has not seeped into my blood. This is a nasty little bacteria that normally presents in the lungs and can go into the brain. Not good. Thank goodness it is localized only in my kidney and that the new antibiotic is killing it off. My protein C reactive has also gone down to 9 this is wonderful news. Less than 10 is where it should be so it has dropped from 139 to 9 in a matter of days the antibiotic is working. The immunology report came back that my IGG was lower than normal and protein levels were really low. Dr. Zuniga asked what type of animal meat or proteins did I eat. Well as a matter of fact I have not had any protein for about a month. Remember Shelbe the new nutritionist? Well she had put me on an all carb diet. I was eating just chicken broth with wheat pasta, bread, potatoes, and carrots, and barley cereal for my breakfast. I was not taking in any protein and this has caused my levels to drop. It is very interesting to me how food affects the body’s system so much. How too much of one thing or too little can cause drastic changes. Just simply having my levels lower can cause my defense system to lower as well.

My mom and dad are always investigating what foods are the best for me. As a matter of fact, before I became ill mom had spoken to Shelbe and had asked why I was not having protein and vegetables in my diet. To make a long story short I am no longer seeing Shelbe the nutritionist from California.

On Monday my mom went out to find me some organic beef! Mom found a specialty butcher in Escazu. She went and spoke with the butcher and told him my situation. He was such a nice man. He individually packed 2 oz packages of meat for my lunch and dinner. He vacuumed packed them and put my name on each one. It was so nice of him. Mom also picked me up some organic chicken. Now mom is adding this to my yummy vegetable soup and organic brown rice we are hoping to raise my protein level back up again soon! We have also added fresh coconut milk to my breakfast. It is yummy and we are using the coconuts from our property. It is amazing all the benefits the coconut has such the milk to help with my seizures, the water for electrolytes, and the oil fights bacterias as it is rich in antimicrobial. Whew, after putting all this into body I should be healthy as a horse!

Love Malia.

February 23rd thru 26th

This morning my mom realized that I had very little food left for my stay here at the hospital. Since we make my food from scratch mom did not want to start feeding me hospital food that she would have no control over. Mom called Honey who has the organic market ever Saturday in Montezuma and St. Teresa. The market we go to sell our plants! Anyway, as luck would have it, Honey was in San Jose. She told my mom to call a good friend of hers who has an organic restaurant called Buena Tierra. Mom called Laura and she said she would be more than happy to make my meals for me. Irene, my new PT, came by to see me and her and my mom went to Buena Tierra to pick up my food. I am now eating organic brown rice with an organic vegetable soup blend of kale, chard, carrots, onions and a wee bit of miso. It blends up perfectly in the blender that my mom brought with us. Mom blends up the rice and veggies for me in my room. We are keeping things light since I am in the hospital. Thanks Laura, for taking care of my menu and not having my mom stress about making my food! That was very kind of you!

When Irene and mom came back Dr. Navarro the pediatric surgeon had come by to see me. He wants to try and see which of my veins is bigger so he can run a central line as I will need to be receiving antibiotics for the next couple weeks. Dr Navarro tried 2 times in my right arm but my veins are too small. Vivian the head nurse had me wrapped up in a sheet like a taco so I wouldn’t move my arms or legs during the attempt. I know the Dr.tried hard but I wished he would have been able to succeed as it hurt me and my Mom and Dad hate seeing me in pain. My parents are worried because now I have to go for surgery. Mom and dad have asked not to put me under with general anesthesia because I do not do well when I am put under. I have had terrible reactions that cause me to have lots of phlegm and can cause respiratory distress. My parents want to avoid that at all costs. We made the decision to give me chloral hydrate and a local anesthesia. My surgery is planned for 5:30 PM.

At 4:30 mom and dad gave me my sedative and within half an hour I was asleep. We went down to surgery and Dr Navarro was waiting for us and the nurses came and took me away. The Dr. said the procedure would take about 30-45 minutes. My mom and Dad were waiting for me and when an hour passed they started to worry. Well an hour turned to 11/2 hrs and Mom was now pacing the floor and Dad was playing my song from Bob “Marley “Three Little Birds” which he always does to reassure himself and Mom that everything will be alright. Finally close to 2 hours later I came out of the surgery room. Dr. Navarro looked very tired and stressed but told Mom and Dad that the surgery was a success. I was very tired and sleepy but felt OK. Dr. Navarro explained to my parents that he tried 2 times on one side of my neck and was unable to put in the line. Since I was not under a general anesthesia I was moving and making it even tougher for him to put in the line. However he finally was able to guide it in Gracias a Dios! Dr. Navarro has put in my file that all the nurses that give me my antibiotic have to wear sterile gloves and to make sure that they clean the catheter site every time. The central line has a higher risk of infection due to its location.

It was almost 8pm by the time I was taken back to my room. I was hungry and groggy. I had a good night’s sleep actually slept all the way through and did not even wake up when they came to put in my antibiotic. Mom has been like a hawk eying everyone to make sure they give me my antibiotic correctly. I woke up in good spirits. Right now it is just a matter of time to see how fast this antibiotic can kill the bacterias in me. Dr. Zuniga and Dr. Navarro came to check in on me and everyone is satisfied with the line and hopefully we will be able to keep it clear from infection and hopefully no secretions around the site. It is suppose to be able to last two to three weeks. Every three days I have to have the site cleaned and a new patch put on.

Sunday morning the nurses came in to cure my incision site. My mom was very worried about this as when the doctor put the patch on my neck to cover the incision he also included a bunch of my hair with it. Imagine the skin under your chin. It is tender, soft, and of course I am just a babe so it is extra sensitive. Now think about a huge patch stuck like super glue to it including a chunk of my beautiful blonde hair. The two nurses and mom were all dressed with surgical masks, sterile gown and gloves. Dad was on the couch and there for moral support while mom held my hand and told me what was about to happen to me. Mom said that hopefully it would be over really soon. Well it did not happen fast as a matter of fact it felt like it lasted forever. The minute they started to pull back the tape I began to scream. Of course they were using a tape adhesive to help remove the tape but it did not matter nor did it help. It hurt terribly. My hair is also stuck in this tape, I am suffering immensely as at the same time they are pulling the tape they are pulling those tiny little baby hairs. Please tell me this is going to stop. Finally mom says stop. She told them to give me a break. To let me breathe as I was gasping for air as I was crying so hard and they were holding me down. Mom then proceeded to tell them to bring some sterile scissors to cut my hair that was stuck to the tape. They brought back the scissors and proceeded again. I do not remember when something has hurt so terribly. Once they finally got the tape off they had to clean the site. Even though there was a tremendous relief to have the tape off once they started cleaning it I still did not care I had been traumatized and could not stop crying and whimpering. This nearly killed my parents. I have to say my mom and dad were strong to not have yelled nor strangled anybody but they both knew that it was not the nurses fault. After it was all over mom picked me up and put me over her shoulder. I believe I was traumatized into a seizure as I ever so slightly began to tense my body into seizure mode. Mom just held me and we both cried together for a bit and then I fell asleep. My seizure did not last but a few minutes. My site has to be cured every three days. My mom made sure that this time when they put the new patch on that my hair was not stuck in it and she made them cut the patch into half instead of covering too much of my neck. Lets hope the next time it is not so bad.

Sofia and her mom came to see me this morning. They had arrived right before the cleaning began and mom asked them to come back later on. It was a good thing as I know Sofia would not have been able to bear to see me that way. Matter of fact when she came in I was awake but I was still hurt and not feeling good. I was however happy to see her. My dad is leaving at 1pm to go back home. He would not be leaving me if I was not doing better. My fever is beginning to go down and I am looking good. Sofia and Xenia are going to look after me and give me my lunch while mom takes dad to the bus stop. Dad is taking the bus home so my mom can have a car. I know dad does not want to leave us but we have a business to run and dad has gardens to build. I am going to miss him terribly. He makes me laugh! He also helps out my mom a ton! I know mom will miss dad too. He plans to come back next weekend.

I had a great time with Sofia and Xenia. They entertained me. I finally got over what happened in the morning and began to have some fun! It meant so much to me that they came to visit. Sofia is going to help mom this week and come workout with me. It works out really well as Sofia will be able to meet Irene and she can show her some moves that Sofia does with me! Sure hope this next week is a good one and that I can get outta of here soon.
Love Malia xo