Archive for August, 2012

More tests!

Friday, August 31st, 2012

Today I have my second to last test to do in order to rule out that there is something anatomically wrong with me. I get to have a colon enema. My dad and mom took me to have this test done where I have to again yet have something shoved up me that shouldn’t be there! What does a colon enema show? It shows whether or not there is a fissure between my rectum and vagina. If there were to be a fissure between the two than that would be a good way to know why I am having all these urinary tract infections. I make it through the test with no problems and I am not too uncomfortable I have had much worse done to me. It turns out that everything is fine. My parents already had assumed I would pass this test as well. Back to the drawing board again ! At least we are ruling out things!
Love Malia

Ladrones!!

Tuesday, August 28th, 2012

What might Ladron mean in English? It means Thief!

Monday afternoon my mom took my dad to the bus stop in downtown San Jose and they had dropped me off with Irene at her home in Escazu. Dad had to get back to work! We were sad to see him go! After mom dropped him off at the bus station she made one more stop to see their lawyer then she came back to Escazu around 4pm. My mom was super careful as they had my portable oxygen machine in the car. Once mom made it back to Irene’s she gave a big sigh of relief. Mom always parks the car in their garage but when she arrived at 4pm Irene’s car and her mom’s were in the garage. Don Kiki,Irene’s dad, was cleaning out the car so mom parked our car in front of their garage respectfully waiting to pull the car inside once Kiki was finished cleaning the car. Irene’s parents have a gardener and guard at their home and mom did not feel worried about the car as it was locked and it was still daylight. Around 5:30pm one of my doctors called and mom was on the phone with him for 45 minutes. After she hung up the phone she realized it had become dark and asked Kiki if we could move our car inside the garage.
Too late. Mom went outside and the cars was unlocked and my O2 machine was gone. They had broke inside our car and just took my air away!

Thiefs are so stupid. They did not take my charger to the machine so the machine in the end is of absolute no use to them. I dont think they will be going online and purchasing an AC adaptor for $200! This was a very big loss, and a very expensive machine that I can use to take with me when I travel in the car or fly. Thankfully my Uncle Jesse is coming to see me in a week and he will be bringing me a new one down. Lourdes, Irene’s mom, thankfully has an O2 concentrator from when her dad was not well so we were able to use the machine while I stayed with them. I do not use oxygen all the time but there are days when I need it and oxygen is something you have to have whether you need it or not because when you do it need it there is no time to waste.

My mom just new my dad would be so upset but you know what he said to my mom? He told her that it was a material thing, that health and happiness were more important. That we would get another one and not to worry so much. Thankfully we were able to purchase another one and my Uncle Jess will be bringing it to me soon. Mom says, those Ladrones will have Karma catch up to them one day!
Love Malia

Hanging at El Bolero!

Monday, August 27th, 2012

Nap time with dad!

Monday, August 27th, 2012

Turrucares!

Monday, August 27th, 2012

Thankfully I am not admitted to the hospital. Even though my sodium level is now high we are able to monitor me away from the hospital. We had come into town on Tuesday and my dad is coming in on Friday to spend the weekend with us. We headed out to El Bolero on Friday afternoon and the three of us had a wonderful weekend together. I will have to check my sodium again in the next few days. The weather has been unusually warm here and it has not been the typical rainy season whatsoever.

Dra. Castro is on a cruise in Alaska, so Dr. Perez will be taking care of me while we are in town. He was one of the doctors who saved my life in intensive care at the Children’s hospital when I was so sick. He is a great doctor and my parents value his opinion and are happy that he will be able to take care of me while we are in town. He made sure that they checked everything little thing on me and so far everything has turned out good and my fever and irritability is being blamed on the high sodium.

We had such a relaxing weekend together one of the first times in a long time we have all had such a peaceful relaxing time together! Thank goodness for that!
Love Malia

Dehydrated

Monday, August 27th, 2012

By Monday I was not looking good. My eyes were very sunken and I looked very pale. I still am running a fever. My parents think that I am dehydrated. They never understood why they had cut out 50% of my liquids which ended up being my water as the other 50% is my food. It is time to go back to San Jose. There is definitely something wrong with me and as Luisa always says when I am sick, my eyes look sad.

The next morning we packed up and went to San Jose. We went to ER and did the usual exams and my blood work came back with high sodium this time. Can you imagine!!! High sodium can cause death, also was the cause of my fever as my blood work came by normal and I have no infection. My nuerologist said the worse thing to happen to me is to have my sodium levels going up and down it is very very hard on the body. Now my sodium is too high!!!! Geez can we not get this straightened out? One minute high the next low. We increased the water, my mom had already begun to give me water the day before and now we have decided that we will not leave San Jose until we get this sodium problem straightened out! Thankfully Irene’s parents are so kind to our family and has offered to let us stay in their home until we get this figured out. Immediately after I began to receive more water I started looking much better!
Love Malia

Weekend at home!

Monday, August 27th, 2012

When we arrived home my dad and Luisa had flowers everywhere for my mom. My dad had cooked a lovely dinner for my mom and he and my grandma made their traditional cheesecake they make for her every year. We had a really nice time together. It was so nice to be out of the hospital and at home.

On Saturday my dad had planned a surprise birthday party for my mom at our dear friend’s Piti and Miguel’s. It was so much fun, my mom had no idea. We all went over there and everyone yelled surprise my mom was very happy! Piti and Miguel gave a set of keys to my mom and told her that she had the night to stay at their luxury villa! My dad has been planning away since we have been gone. After dinner that evening, mom drove Irene and me back to the house and got Irene set up for an overnight stay! The first time in 4 years that I will not be sleeping in the same room with my mom and dad! Mom told Irene a historical moment was about to happen! We had a great time together watching movies and reading books. I missed my parents that night a little bit but I was cuddled up to Irene in bed so all was good! My parents came home later that next day and they too had a wonderful time together!

On Sunday I was agitated and running a small fever. Irene had taken me over to my grandparents while I waited on my mom and dad to come home but I am not very happy no matter where I am. I did not sleep that night at all. Mom is getting concerned and we probably will be going back to San Jose sooner than later.
Love Malia,

CIMA July 19th to 27th

Monday, August 27th, 2012

On Wednesday evening we decided to take the 5pm ferry so we would be in San Jose first thing Thursday morning. My granny is coming with my mom and Irene. I have been in the hospital so many times this year and she has never been here so it is nice to have my granny’s support. We are staying in Turrucares at Irene’s. We have to be at the hospital tomorrow morning by 9:30 am to draw blood and run the usual tests. We had a good night together. I slept very well, I always do at El Bolero.

The following morning we were out the door early and after running the tests we found out that my sodium is low again. This has really been causing all kinds of problems in my life having this sodium level low. Dra. Castro has decided to admit me to the hospital again so that we can get an IV in me and start giving me sodium. She has called Dr.Fernandez the nephrologist and Dr. Richmond an Endocrinologist as well as Dr. Caceras a pediatric neurosurgeon. Geez! That is alot of docs!

We did not think I was going to have to be admitted to the hospital so my mom and granny had to run out to Turrucares to gather our things and we needed to meet Dr. Castro at the hospital at 6pm. Mom and granny took off to Turrucares to get our things and I stayed with Irene at her mom’s house in Escazu. It was almost 8pm by the time we got upstairs and into our hospital room. Dr. Fernandez has ordered that I have a catheter foley put into me so they can run a 12 hour study on how much I am urinating to see if I am losing sodium through my urine. Previously two nurses had attempted to find my vein to put the IV in me and in the end Dr. Navarro the pediatric surgeon was called in to do it. I am not very happy about this at all as I have been poked already so much today. Dr. Navarro came by at 10pm to find a good vein and at last he found one in my foot. We were able to start the slow drip of sodium into my veins. Dr. Navarro went ahead and put in the catheter as well as none of the other nurses wanted to do it. Dra. Castro said the nurses are intimidated by my mom! The catheter has a small balloon that Dr. Navarro fills up with water so that it stays in place. We will be monitoring how much I am urinating. This is the most uncomfortable feeling in the world. I do not like it one bit and I do not sleep well that night as I can’t get comfortable with this thing inside me. We went ahead and took a urine sample as we will be testing to make sure that I do not have a urinary tract infection. Mom and granny did not get much rest either as I was not sleeping and mom kept patting me and trying to soothe me.

The following morning, mom noticed that my diaper was wet. It should not have been wet so she mentioned this to the nurse. As it turns out the catheter was leaking as the size was too small and we had to take it out and start all over again. Hours of being uncomfortable to think that by 10 am I was going to have it taken out only to find out that I have to have another one put back in! I am not a happy camper at all and neither is mom and granny. The head nurse came in with an assistant and put in another one, we took another urine sample as well as mom has decided to start testing my urine at two laboratories to make sure the results coincide. I have had so many urinary tract infections we have to make sure that labs are right and everyone can make mistakes sometimes.

By 5pm, I am highly agitated. I can not get comfortable I want this out of me. Finally the nephrologist comes by to see me and says she has enough information from the study and that I can have the catheter taken out. This is the best news ever. Shortly after she leaves, Dra. Castro calls and says not to take it out but to leave it in for more studies. Mom and Dra. Castro exchanged words as mom wants it out just as much as I do as she can not stand to see me suffer and granny is not helping much either as she really gets excited if I am upset. So mom finally makes the decision to go with the first Dr. and to have them take it out. You would not believe the relief I feel from this being out of me and immediately I go to sleep.

My team of doctors have decided that I either have salt wasting syndrome or SIADH which stands for Syndrome of Inappropiate Antidiuretic Hormone Secretion. Now they believe I am either losing the sodium through the urine or that my pituitary gland in my brain is releasing too much of the anti-diuretic hormone. I know…. it is complicated. Today came by Dr. Caceras he is a pediatric neurosurgeon. You might wonder why he has come to visit me? Well my mom found out on her support group that many Liss kids have had what is called Tethered Spinal Cord Syndrome. This means that it is possible that my spinal cord which should normally hang loose in the canal and be able to move freely up and down might be tethered and held tight at the end of the spine. This can be a cause of recurring urinary tract infections. So it has been decided that I shall have a MRI on my spine to see if my spinal cord is tethered or not. Dr. Caceras also mentioned that it is very possible that the reason my sodium is low is because I take a seizure medication called Trilpetal and one of the side effects Trileptal has is hypnotremia (low sodium). This is news to my mom and knowing me, if there is a side effect I am usually the one to get it. Mom calls Dr.Luna my neurologist and explains her concerns and we begin to wean me off slowly of the Trilpetal and introduce a new drug called Keppra. At the moment the other two doctors have cut back my liquid intake by half to see if that will help raise my sodium and in three days my sodium is back up. They allow me to start taking in a small amount of fluids again.

In all this time that we have been testing and seeing doctors it turns out that my urine culture has showed back up positive. It has been only 15 days since my last urinary tract infection and this time the bacteria of choice is Ecoli. :( It is very resistant as well and is showing that only one oral antibiotic will work and the other antibiotics are only by IV. We immediately start me on an IV of Amikacine. We have not yet got back the results from the other lab as it is private lab and they were closed over the weekend and we will not know what their results are until Monday. We started the IV for the weekend of the antibiotic. My parents are distraught over this news and now more than ever do they want me to have the MRI to see if this is the reason why I keep having these infections.

On Monday mom begins to call the private lab to find out the results from the other urine culture. Guess what? The test came back negative!! It says I do not have a urinary tract incfetion. This is very conflicting and confusing for everyone now! The hospital lab says I have Ecoli a very resistant bacteria and the private lab says I dont have anything at all. This is not good news, but now since we have started the antibiotic we can not stop it and also none of the doctors know which lab to believe. Not good at all. We continue the antibiotic and mom schedules the MRI for Tuesday.

Cima does not have the best equipment for imaging to do the MRI and so we have scheduled it at the other private hospital downtown. We get permission from the hospital for my mom,granny and Irene to take me out of the hospital and drive me to the other hospital to do the MRI. Thankfully everything goes smoothly and I have the exam and am back at CIMA by noon for lunch.

We got the results the next day and spoke with the neurosurgeon who studied the MRI and it turns out I do not have a tethered cord. On one side it is a good thing my spinal cord is not tethered as if it was it would mean surgery but on the other side we still do not have an answer to why I keep getting these infections and were hoping to have an answer. Back to the drawing board.

We tested my sodium again and it had lowered again, not drastically but it lowered and that is not good so they have cut the water back again. It has been determined that Friday, my mom’s birthday, we will be getting out of here. I lost my IV in my foot so we have started me on the oral antibiotic that will supposedly work on the maybe I have an infection maybe I dont have infection. Either way, we can not risk it. I have to finish my antibiotic. The plan is for me to go home with the reduction in liquids and come back in a week to test my sodium levels again. I am feeling better and can not wait to get outta here. Thursday evening my team of doctors got together at 7pm to have a round table discussion about me and to come up with a plan. That evening they came into the room to announce to mom they want to put me on an antibiotic for six weeks after I finish up the antibiotic I need to take for the supposed uti I do or do not have. Six weeks of antibiotic???? It is that nasty one too Ciprofloxacine but what are we to do? My parents have a difficult time making the decision but after speaking to many other doctors and getting different opinions they decided to go with their decision. We all hope it is the right one. You see my bacterias just keep getting more and more resistant and that makes things very difficult.

On Friday, we left the hospital by noon and were home by 5pm. It is great to be home and my daddy is ecstatic to see us.
Love Malia

I am ready for card making!

Monday, August 27th, 2012

Perfect hand positioning!

Monday, August 27th, 2012