February 21st thru 22nd

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

2 Responses to “February 21st thru 22nd”

  1. Daron Garland says:

    Dear Malia, this is Daron from Portland, Oregon. I am 1 yr. old and have MDS. My mom and I have been following your blog and thinking of you often. You are an inspiration to me. I am so sorry that you are not feeling your best, but we know you will pull through. We are praying for you and will look forward to hearing good news on your recovery very soon. My mom is wondering if the radiation kidney test has anything to do with the complication you experienced, although your parents probably got the answer to that already. Stay strong!
    Daron and family.

  2. Rachel says:

    Hi Daron!
    Thanks for writing to me. I love Portland Oregon. Me and my mom and dad flew to Oregon when I was very little so my mom could learn how to do Cranio Sacral therapy on me. It is such a beautiful place. My parents asked the radiation tech about the amount of radiation going into me but he said that a xray has ten times the amount of radiation and that is was very safe and minimal. He put my parents to ease a bit! I hope to get outta of here maybe next. Hope you are well. Stay strong, never give up and don’t always believe what the doctors say!
    Lots of love Malia

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