Archive for September, 2014

Going home!

Tuesday, September 23rd, 2014

The 8 days at CIMA went by pretty fast. My dad left on Tuesday to go back to work and mom stayed with me. We’ve been reading books and watching cartoons. MJ came back to work on Tuesday and we started a small amount of therapy.

There is always side effects with antibiotics. And of course the side effect of this drug is seizures. Even with a 104 fever I had no seizures but after day 5 of taking Menroprem I began to have small seizures. It is really bothering me. I am not used to having them now. I am doing different types too like eye blinking, and smacking my lips as well as some jerky movements. I sure hope this side effect goes away soon. I have been doing so good.

Our plan was to leave the hospital by noon. I did not sleep at all the night before. I cried, and was agitated. Mom was up walking the hospital hall with me in the stroller. We were both up till 6am. MJ showed up at 6:30am and started getting everything ready and fed me breakfast. Mom was able to sleep an hour, and me too. We have a long drive back home and I know mom needed to some rest before our road trip together. Dra. Castro is coming by to take out my PICC line! Yeah.

We managed to leave on time and get home by 4:30pm. Dad had dinner made and was very happy to see us. Our flight to Texas was suppose to be on Monday but we pushed it back to Wednesday… I needed to rest and go home to my bed before making any big trips. I am doing pretty good here at home. Seizures are still messing with me but I am hoping that will go away soon!
It is so good to be home.
Love Malia


Tuesday, September 23rd, 2014

Now you may be wondering what is a PICC? A PICC line is, by definition and per its acronym, a peripherally inserted central catheter. It is long, slender, small, flexible tube that is inserted into a peripheral vein, typically in the upper arm, and advanced until the catheter tip terminates in a large vein in the chest near the heart to obtain intravenous access.

I did not sleep so great that night. I never do before any surgery. Mom gave me a some fruit at 2am as I can not have anything to eat after 3am. We went down at 8:30 to the surgery waiting room. Dr. Navarro and Dra. Trinosky came by to talk with my parents and sign the forms before I went in to surgery. Dr.Navarro told my mom that the procedure would take 30 minutes maximum an hour. I went in at 10:00am. At 11:30 am I still had not come out of surgery yet. My parents were beginning to pace. So many things can happen inside of that room. Finally at noon Dra. Castro wrote a text to my mom saying that they had complications in finding a vein to put the PICC in. In the end Dr. Navarro had to call for a ultra sound machine so that he could have the ultra sound guide him to put in the catheter. The catheter is 32 cm long. The problem is that my veins are not straight but more so like curvy roads. The doctor had said that he could find a vein but when the time came to run the catheter line up my vein he would get stopped as the vein was not straight but curvy. This is due to so many antibiotics as well. He finally found a vein in my upper left leg.

Finally at noon they came to get my parents. Only one could come into the recuperation room. I had hypothermia from being so cold in there and they had me bundled up and a heater blowing into the sheets to keep me warm. Mom came in and sat with me while I woke up. I am breathing fine and not entubated so that is a great thing. They came in to take an xray of my chest to make sure that the catheter was placed right. After waiting an hour in recovery we went up to my room. A little later I was taken downstairs to have an ultrasound on my kidneys to make sure that the bacteria had not infiltrated my kidneys. Good news, it had not, it stayed in the urine and had not spread. Right now I have to get used to not doing anything for the next 8 days. 
Love Malia

Ecoli ESBL

Tuesday, September 23rd, 2014

You may ask what in the world is that? Well it is a very resistant bacteria that got into my urinary tract. Ecoli lives within us, this is not something I picked up at a bad restaurant. I have dealt with UTI’s all my life. You may remember that two years ago I had 9 UTI’s in one year. There is always a risk in taking antibiotics. They can create resistancy to the bacterias. This is exactly what has happened to me.

On Monday, September 8th, I began to feel bad. I was fussy at the dinner table and normally I am not. By the time I went to bed I was hot. Mom took my temperature and it was 99.8. Mom decided to leave it alone and see if it would go up. At midnight I was fussing again and mom took my temperature and it was 103.4. I never get high fevers like this and this made my parents worry. By Tuesday morning it was obvious that I was not feeling well. My temperature was not coming down. Mom and MJ began to get everything together to leave for San Jose.

We ended up taking the 5pm ferry. Mom called Jonathan who draws my blood and Carmen who is really great at catheterizing me. Both of them agreed to meet us at Krystal’s at 8 pm. Mom did not waste another minute to get the lab work started. My PCR came back high at 37 and the rest of my numbers did not look so bad but my urine sample was dirty. It takes up to three days to determine what bacteria is growing in my urine. This is always the hardest part, waiting to see what bacteria is messing with me. While waiting I am not feeling any better. My fever keeps skyrocketing and three times now I have hit 104. With a fever that high seizures are always at risk. Always…. Unbelievably I did not have a seizure during this time of high fever.

On Thursday afternoon Dra. Castro called my mom and told her she needed to bring me to ER. She said that the bacteria I had was very bad and resistant to all beta lactames. The only drug that is going to kill this bacteria is Menroprenem and this is only administered by IV. This was devasting news to my parents. My mom had originally thought we would be going back home and taking oral antibiotics. Now I have to be admitted to the hospital for 8 days. I have to be put under anesthesia in order for a PICC line to be put in so that it will last the 8 days I am in the hospital. Mom had a hard time with this, I have been so healthy as a matter of fact this is my first UTI in two years. I guess if I had to have one it had to be a doozy!

Mj and Mom started packing again, and we were to meet Dra. Castro at 6pm in ER and at 8pm I would get my PICC by Dr. Navarro. When we arrived to CIMA a few things had changed. The anethesiolgist that works with Dr. Navarro and knows me was not available so Dr. Navaroo decided that he wanted to wait until the morning to put in the PICC as he only wanted the best for me. He was able to succeed and put a small IV in my hand so that I could begin to receive antibiotics. I really needed for that fever to go down. We went up to my room for the next 8 days and said hello to all the nurses and doctors who know me.
Tomorrow morning is my surgery. I hope I get better soon. I have a big party in Texas coming up really soon!
Love Malia


Sunday, September 7th, 2014

Me mom and granny went swimming at Chrissy’s today! It was so much fun! I was so excited to get in the water. I absolutely love to swim! I moved all around kicking, floating, turning….It is such freedom for me. I am weightless able to move and do whatever I want. The feeling is incredible, I make cooing noises and smile alot when I am in the pool. It is very relaxing for me and it is a great workout too! I am taking my float to Texas with me hopefully will be able to go for a swim or two while I am there. Mom took a video of me! Enjoy!
Love Malia xoxo