February 23rd thru 26th
This morning my mom realized that I had very little food left for my stay here at the hospital. Since we make my food from scratch mom did not want to start feeding me hospital food that she would have no control over. Mom called Honey who has the organic market ever Saturday in Montezuma and St. Teresa. The market we go to sell our plants! Anyway, as luck would have it, Honey was in San Jose. She told my mom to call a good friend of hers who has an organic restaurant called Buena Tierra. Mom called Laura and she said she would be more than happy to make my meals for me. Irene, my new PT, came by to see me and her and my mom went to Buena Tierra to pick up my food. I am now eating organic brown rice with an organic vegetable soup blend of kale, chard, carrots, onions and a wee bit of miso. It blends up perfectly in the blender that my mom brought with us. Mom blends up the rice and veggies for me in my room. We are keeping things light since I am in the hospital. Thanks Laura, for taking care of my menu and not having my mom stress about making my food! That was very kind of you!
When Irene and mom came back Dr. Navarro the pediatric surgeon had come by to see me. He wants to try and see which of my veins is bigger so he can run a central line as I will need to be receiving antibiotics for the next couple weeks. Dr Navarro tried 2 times in my right arm but my veins are too small. Vivian the head nurse had me wrapped up in a sheet like a taco so I wouldn’t move my arms or legs during the attempt. I know the Dr.tried hard but I wished he would have been able to succeed as it hurt me and my Mom and Dad hate seeing me in pain. My parents are worried because now I have to go for surgery. Mom and dad have asked not to put me under with general anesthesia because I do not do well when I am put under. I have had terrible reactions that cause me to have lots of phlegm and can cause respiratory distress. My parents want to avoid that at all costs. We made the decision to give me chloral hydrate and a local anesthesia. My surgery is planned for 5:30 PM.
At 4:30 mom and dad gave me my sedative and within half an hour I was asleep. We went down to surgery and Dr Navarro was waiting for us and the nurses came and took me away. The Dr. said the procedure would take about 30-45 minutes. My mom and Dad were waiting for me and when an hour passed they started to worry. Well an hour turned to 11/2 hrs and Mom was now pacing the floor and Dad was playing my song from Bob “Marley “Three Little Birds” which he always does to reassure himself and Mom that everything will be alright. Finally close to 2 hours later I came out of the surgery room. Dr. Navarro looked very tired and stressed but told Mom and Dad that the surgery was a success. I was very tired and sleepy but felt OK. Dr. Navarro explained to my parents that he tried 2 times on one side of my neck and was unable to put in the line. Since I was not under a general anesthesia I was moving and making it even tougher for him to put in the line. However he finally was able to guide it in Gracias a Dios! Dr. Navarro has put in my file that all the nurses that give me my antibiotic have to wear sterile gloves and to make sure that they clean the catheter site every time. The central line has a higher risk of infection due to its location.
It was almost 8pm by the time I was taken back to my room. I was hungry and groggy. I had a good night’s sleep actually slept all the way through and did not even wake up when they came to put in my antibiotic. Mom has been like a hawk eying everyone to make sure they give me my antibiotic correctly. I woke up in good spirits. Right now it is just a matter of time to see how fast this antibiotic can kill the bacterias in me. Dr. Zuniga and Dr. Navarro came to check in on me and everyone is satisfied with the line and hopefully we will be able to keep it clear from infection and hopefully no secretions around the site. It is suppose to be able to last two to three weeks. Every three days I have to have the site cleaned and a new patch put on.
Sunday morning the nurses came in to cure my incision site. My mom was very worried about this as when the doctor put the patch on my neck to cover the incision he also included a bunch of my hair with it. Imagine the skin under your chin. It is tender, soft, and of course I am just a babe so it is extra sensitive. Now think about a huge patch stuck like super glue to it including a chunk of my beautiful blonde hair. The two nurses and mom were all dressed with surgical masks, sterile gown and gloves. Dad was on the couch and there for moral support while mom held my hand and told me what was about to happen to me. Mom said that hopefully it would be over really soon. Well it did not happen fast as a matter of fact it felt like it lasted forever. The minute they started to pull back the tape I began to scream. Of course they were using a tape adhesive to help remove the tape but it did not matter nor did it help. It hurt terribly. My hair is also stuck in this tape, I am suffering immensely as at the same time they are pulling the tape they are pulling those tiny little baby hairs. Please tell me this is going to stop. Finally mom says stop. She told them to give me a break. To let me breathe as I was gasping for air as I was crying so hard and they were holding me down. Mom then proceeded to tell them to bring some sterile scissors to cut my hair that was stuck to the tape. They brought back the scissors and proceeded again. I do not remember when something has hurt so terribly. Once they finally got the tape off they had to clean the site. Even though there was a tremendous relief to have the tape off once they started cleaning it I still did not care I had been traumatized and could not stop crying and whimpering. This nearly killed my parents. I have to say my mom and dad were strong to not have yelled nor strangled anybody but they both knew that it was not the nurses fault. After it was all over mom picked me up and put me over her shoulder. I believe I was traumatized into a seizure as I ever so slightly began to tense my body into seizure mode. Mom just held me and we both cried together for a bit and then I fell asleep. My seizure did not last but a few minutes. My site has to be cured every three days. My mom made sure that this time when they put the new patch on that my hair was not stuck in it and she made them cut the patch into half instead of covering too much of my neck. Lets hope the next time it is not so bad.
Sofia and her mom came to see me this morning. They had arrived right before the cleaning began and mom asked them to come back later on. It was a good thing as I know Sofia would not have been able to bear to see me that way. Matter of fact when she came in I was awake but I was still hurt and not feeling good. I was however happy to see her. My dad is leaving at 1pm to go back home. He would not be leaving me if I was not doing better. My fever is beginning to go down and I am looking good. Sofia and Xenia are going to look after me and give me my lunch while mom takes dad to the bus stop. Dad is taking the bus home so my mom can have a car. I know dad does not want to leave us but we have a business to run and dad has gardens to build. I am going to miss him terribly. He makes me laugh! He also helps out my mom a ton! I know mom will miss dad too. He plans to come back next weekend.
I had a great time with Sofia and Xenia. They entertained me. I finally got over what happened in the morning and began to have some fun! It meant so much to me that they came to visit. Sofia is going to help mom this week and come workout with me. It works out really well as Sofia will be able to meet Irene and she can show her some moves that Sofia does with me! Sure hope this next week is a good one and that I can get outta of here soon.
Love Malia xo