Archive for February, 2012

February 21st thru 22nd

Sunday, February 26th, 2012

I am in room 1012 at Hospital CIMA. Everyone and I mean everyone knows me here. Everyone keeps commenting on how big I am, how much I have grown, what beautiful eyes I have and how I really do not look sick. It could be worse, I could be at the public hospital and mom and dad would not able to be in the room with me. So  since I have to be here I might as well try and catch up on some rest. My fever is still here this morning it spiked up to 102 again and I started trembling and having a hard time to breathe. I also had 4 of those absent seizures where I hold my breath and go blue. Infections and fever do not go well with seizures! Mom and dad are staying on top of my fever though and giving me something every 4 hours.I had a good night sleep and am pretty active considering I am ill.

On Wednesday morning Jonathan from the lab came into to take my blood. We are running another CRP test to see if my bacteria has gone down and if the antibiotics are doing their job. At 10 am we had the results my CRP had not gone down it had doubled! It was now at 139! Mom called Dr. Castro right away my parents were very worried. Dra. Castro  came right over to see me and we for a second doubted the laboratory. Dra. Castro decided to take another sample of blood and this time from my femoral vein. She did not want to risk using up the veins in my arm and it is not so painful to take from this vein in my thigh. Whatever is inside me is powerful and two potent antibiotics are not  getting it under control. The tests came back an hour later and the CRP was right the number had not changed. Dr. Castro decided to send me down for a ultra sound on my kidneys. Even though I have done various ultra sounds, she thought it could not hurt to investigate again and see if anything was awry.We immediately started me on a new drug called Meropenem. Dra Castro is bringing in the big guns and said this antibiotic was like a big tank that we were calling in to combat the forces of this mean bacteria.

At 5:30pm we went down for my ultrasound, and sure enough my right kidney has been infiltrated by bacteria we were able to see a small colony or that is what the doctor thought it was from the inflammation. My kidney is much larger than the left. Things have now changed for sure as this is much more serious. I have Pyelonephritis (kidney infection). Dra. Castro told my mom not to read about this on the internet, that it would be better if she did not as she would only make herself sick with worry. For the first time, my mom took this advice and as far as I know she has not read about it yet. Dra. Castro said it seems that we got here just in time before the bacteria had time to spread to other parts of my body. We will not find out until tomorrow what the name of the bacteria is but that the new antibiotic should surely kill it.

Dra. Castro told my parents that we would not be leaving the hospital for another 15 days. We now have to think about what vein we are going to be using because receiving antibiotics for 15 days and with the small veins I have we have to make sure it is a vein that we will not have to be worrying about. Dra. Castro as well does not want the nurses to be poking me every few days either.

Dra. Castro asked the infectologist to come by and see me later that evening. She was very nice and had asked if I had ever had a immunoglobulin test done before. We had not done this test before but she made sure and went to the Children’s hospital to check and see if this test was ran last year.  We are asking and bringing specialist to find out why  this keeps happening to me!!! Right now though we just want to get control of what is going on in my body right now!

Dra. Castro is headed to New York for a few days and will not be back until next  Tuesday. That would have worried my parents before but Dr. Zuniga the emergency room doctor who know me and my parents very well is taking charge of my case until Dra. Castro gets back next week. I will be in good hands.

Love Malia xoxox

February 20th

Saturday, February 25th, 2012

On Monday morning the fever was still there and it had risen to 102. It keeps coming back every four hours. Mom made a few phone calls to San Jose she was told to get a urine test done in Cobano first. If it came back positive to come into San Jose. My mom can be real quick to want to scoop me up and take me to the city whenever I have a fever.  Since we were just there the doc’s thought it could not be anything too bad. Mom and dad discussed this idea but to get a simple pee test in Cobano is not the easiest thing, and remember last year when we took the test to Cobano it was negative but I had a severe UTI that landed me in ICU for six weeks. So even though a urine test comes back clean the urine culture could be positive. My eyes look sad and I am burning hot so the decision is made we are going back in to San Jose. This time the packing was fast and furious we had to leave the house by noon to catch the 2pm ferry.

We arrived to emergency at 5pm. I did pretty good on the trip into town. Dr. Zuniga and Carman were there waiting for me. Time to catheterize me again. This time though when Carman put the hose into my bladder she pulled out green secretions. My mom nearly fainted when she saw this and asked what in the world could that be? We all know that is definitely not anything good if it is green. After Dr.Zuniga saw this he told my parents that we would not be going to any hotel that he wanted to admit me right away and get me started on a IV drip of antibiotics. WHAT????? AGAIN???? NO WAY!!!

Dra. Castro came down stairs to see me and decided to put me on two strong antibiotics. Rocephin and Gentamicina these are broad spectrum antibiotics that cover a lot of ground when it comes to bacterias.  My blood test came with  high numbers my C Reactive Protein came back at 65! I have never had that high of a CRP. You might wonder what is CRP test? It is a protein found in the blood and the levels rise in response to inflammation and infection. It can not however tell you where the infection is or what is but it does help the doctors know if a bacteria is lurking around. The normal CRP is less than 10! So mine was high. Carman came back in the room found a vein and we started my IV drip. Dr. Castro and Dr. Zuniga told us we would probably be here  three days taking antibiotics intravenously.  By the time we got upstairs and into a hospital room I was exhausted. We all were. Now it is just a waiting game to see what bacteria it is that I have and to be patient. My fever is still high, I hope I can get a good night’s sleep tonight… Sure glad we came on in to San Jose.

Love Malia xoxo

Sunday February 19th

Saturday, February 25th, 2012

I woke up this morning a little grumpy. Wonder if the change in weather and heat is bothering me? We were planning on going down to Aunt Karen’s today to have lunch with her and George but I am just too tired to think about going anywhere! So we have decided to just stay at home and relax. Mom and dad have a lot of  unpacking to do! Irene and Javier came over for breakfast then went off to explore the Montezuma beaches. I went back to sleep after breakfast and slept till almost noon. When I woke up I felt hot and mom took my temperature. It was only a 100 degrees but mom was a bit concerned that I had fever. My parents thought it could easily just be the change in weather and that my body was getting accustomed to the heat. Mom gave me some tylenol anyway…

Today is my granny’s birthday so me and mom skyped Granny and wished her a happy birthday.  After lunch I went to sleep for most of the afternoon and when I woke up I was grumpy again. By 6pm I felt hot and mom took my temperature and it had risen to 101. Hmm…. What is going on here?

That night I did not sleep well. Mom and dad were thinking is it even possible for me to have yet another urinary tract infection when I just was in San Jose and all my tests had come back clean and negative? How could it be? I don’t have a cough or cold so the only other thing that could be bothering me is a UTI.  Mom made a parsley tea for me and when I went to bed she connected me to my feeding machine so that I would be getting liquids all night. She slept with me in my bed but we did not do much sleeping as I was waking up and crying all during the night. Every time I peed it hurt I would grimace my face and cry. Oh no,,, I sure hope I am not getting sick again.

Malia xo

February 14th thru 18th

Saturday, February 25th, 2012

Tuesday  February  14th Happy Valentine’s Day!

After such a great weekend it was time for us to begin our ritual of packing up everything but the kitchen sink and head to San Jose. We have to go in because I have to have ANOTHER urine culture. Every time I finish taking my antibiotics I have to test to make sure the bacteria is completely gone. We as well have interviews lined up for a new therapist for me hopefully we find the right one!  We are going in on Tuesday and hope to come home on Friday. We  are also meeting with a urologist. Hopefully he can shed some light on why I have so many urinary tract infections.

We arrived to San Jose around 3pm. We went straight to the hotel as our first interview for my therapist was at 4pm. Anna came to the hotel to work out with me. She did a good job. Mom lined up four interviews for the week. Tomorrow we meet Irene. First thing Tuesday morning we went to CIMA so I could get my urine tested. It takes three days to find out if I am 100% clean. Of course right when I got to the hospital and Carmen was ready to catheterize me I tinkled! So Mom and Dad filled me up with some water and we came back 20 minutes later! Just as Carmen was cleaning me I tinkled again but she caught it in mid stream so I pulled one over on them and did not have to get catheterized this time! Yeah for  me!!

My appointment with Irene was at 11am and we made it back just in time! Irene showed up  early and brought her own mini gym with her to the hotel. She even brought a work out ball. We got straight to the business at hand. She started talking to me  and stretching and we must have worked out close to an hour. I felt very comfortable with Irene. I could sense her confidence in handling me. We had a good work out together.

Later that afternoon we met with urologist, Dr. Konrad Jiminez. Seems that all this time I have been taking prophylactics that it really has not been the best decision for me. Many other kids with Liss take them and they can help prevent urinary tract infections but it never seems to make a difference with me. In the end it only feeds the enemy rather than deter it. So he suggested to take me off them and to only treat the urinary tract infections with symptoms. Continuing to use antibiotics all the time will only cause the germs to become more resistant to the drugs and that eventually even Cryptonite would not help to kill it. He suggested that I take a gamma renal test. You might wonder what that is we surely did not know! It is a test where I am injected with a teenie bit of radiation. The radiation goes specifically to my kidneys and they are lit up like a neon light. This test is to see if I have had any scarring on my kidneys since I have had so many urinary tract infections. I am scheduled to do this on Wednesday.

Wednesday morning we went to CIMA to take the test, the nurse found my vein on the first try and I was so happy for her and me! In went the radiation. My parents were a bit concerned thinking that they were putting radiation into my bloodstream but the tech explained to my parents that an xray had ten times more radiation then the small amount they were giving me to see my kidneys on the big screen! We  had to wait three hours before coming back to the hospital to do the imaging. I also could not have anything to eat and I was suppose to be sleepy and not move or they would have to sedate me.

At 1:30 we came back I would have to say I was not very sleepy but we decided to start the process and I was laid down under this big machine and the technician was staring at the computer at my kidneys. Mom and dad were by my side and then the tech left the room and came back with another girl. The two of them were whispering when mom said  what is the matter? Guess what???? In 1 in 100 cases the radiation does not go straight to the kidneys instead all the other organs in my body were lit up and not my kidneys. We could not do the test. Dad had to leave the room.  Mom was not happy either. Are plans were to leave on Friday to go home. The technician said can you come back on Monday to redo the test? We were like what???? NO WE CAN NOT! We have already been here a week. I could not do the test the following day as to be injected with radiation again you have to wait at least 36 hours. The tech offered to come back in on Saturday to redo the test. Grumbling we all agreed that we would do it Saturday.

Mom called the hotel and guess what all the rooms were totally booked!   We called our friend Krystal and thankfully she said to come on over that we could stay at her house.  Mom was telling our  friend Diego about what happened and he said we should all load up and take me to Vegas with the kind of odds I run we could probably win a million!

On Friday we packed up everything at the hotel and headed to Krystal’s. Mom and Dad were going to cook Krystal a yummy dinner tonight for being so kind to open her home up to us. We come with a lot of stuff!!!

As for the therapists, two of the girls did not show up at the hotel for the interview nor did they call to cancel. Mom was very disappointed as she had  9 girls interested in the position.  It was probably for the best though as we surely would not want either of those girls working with me if not mature and responsible enough to call and cancel the interview. It really did not matter anyway as we had our eye on Irene! I really liked her! Mom and dad talked about it and decided to offer Irene the position. She accepted and is following us home on Saturday to scope out where she will be living. She will start her new job on March 1st. Yeah! I am sure we are going to become great friends.

Saturday morning we rushed out of the house to get to CIMA by  7:30am. The technician who put the radiation in my arm did a great job. It was quick and easy and I only cried for a few seconds. We headed back to Krystal’s and packed up. We had to be back at CIMA at 11am to do the test.  For some reason I am very sleepy today and when we headed back for my appointment mom and dad  just knew that I was going to be awake during the entire test! Well I did not. I slept through the entire 45 minutes. The exam was a success! I passed with flying colors the radiation went to my kidneys so they were lit up like a Christmas tree and I did not have any scars on my kidneys from prior infections. Woo hoo time to head home! Yeah!

We left the hospital at noon and arrived home at 5pm. It was so great to be home although it is much hotter here. Irene and her boyfriend Javier helped us unload the car and then we all sat out in the garden to watch the sunset. There is nothing better than a Delicias sunset. Gosh it is good to be home again.

Love Malia xo

Doris’s Interview move!

Sunday, February 12th, 2012

Cousin Brent and me!

Sunday, February 12th, 2012

February 2nd thru 12th

Sunday, February 12th, 2012

On Thursday Maria came to play and hang out with me. More so hang out with me as I did not do too much exercising today mainly stretching. I am still on the road to mending, but I am feeling much much better. Mom called Doris, the girl mom interviewed before I became ill and she is coming out on Tuesday to work out with. I am glad it is the weekend as I am ready to just catch up on my sleep and relax a bit.

On Sunday a man named Viktoras came over to meet me. He wants to see if he can help me with my diet and overall well being. My dad has made some beautiful gardens for him and they began to talk about me and he suggested that he might be able to help. We are no longer seeing Shelbe the other nutritionist so my dad and mom were happy that Viktoras wanted to come and meet me. He was very interesting and had many great suggestions for me. We started me on sauerkraut juice and enzymes added to my food. Sauerkraut juice has some many wonderful benefits. It is loaded with antioxidants, and helps with the gastro tract, digestion and is a mild laxative as well! I am going to give it a shot and see how well I do on it. Mom is giving me Whey as well from the yogurt  cheese she makes.I am getting a new menu in the next week so will be interesting to see all that it entails!

Doris came out on Tuesday and did a great job. She was very confident and has experience. She handled me very well. I was happy with her style.  We have received many calls for the position of being my therapist. We are interviewing 6 in San Jose. I just know we will pick the right one however I think it will be very hard for someone to fill Sofia’s shoes but we are going to try!!!  Hopefully I will have a new therapist really soon.

The rest of the week I worked and played with Maria.  I had a good week and am feeling like myself again.

Today we went to our friend’s house Piti and Miguel.   We hung out by the pool all day. I napped for awhile listening to the waterfall in the pool than later we went swimming and I had so much fun. I swam for over an hour and was moving all around like a little fish! I was kicking and splashing around! It was awesome! Everyone came to swim with me! Miguel, Maria, and Piti! We had such a great time. After I got out of the pool I hung out on the lounge chair in my chair and had a great time hanging out with Sarah and Dad A little girl younger than me was there and she was so interested in me. She wanted to give me her chips! She touched my face and I touched her. I love other kids. It was a beautiful day….. Tons of fun had by all my kinda way to spend a Sunday!

Love Malia xoxox

Thanks for coming Auntie Karen!

Sunday, February 12th, 2012

Look at these legs!

Sunday, February 12th, 2012

Asleep on the job!

Sunday, February 12th, 2012