February 27th -March 4th

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

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