VNS Surgery August 24

August 29th, 2019

August 24th 2019

It’s finally here, the day has come that I am going to get the VNS device implanted in me. Almost a year later after mom embarked on the mission to find me and have donated to me the VNS device. We did it! Today at 7 am I have to show up to CIMA get checked into my room, get my robe on, and then to head down stairs for pre-op. At pre-op we met with Anesthesiologist Dra. Trisnoski. She would be the one to get a line in my vein for the anethesia and antibiotic I would take before surgery. She had the nurse to hold my arm, mom had said you better hold tight. Miss Malia can move she found the vein but the nurse wasnt holding my hand good enough and I pulled back and out went the needle as well as a ton of blood that shot across the room. Time for second try, this time it was a success and the nurse had an extreme grip on my hand this time.

After that Dra. Trisnoski asked to speak to my mom. My dad stayed with me and mom went to talk to the doc. The doctor did a good job of explaining absolutely everything that could go wrong inside the operating room. THe list was long but my parents both agreed that no matter what happened in there that they have only been trying to do the best for me since birth. If VNS therapy proves to help me and reduce my seizures then the risk being taken was worth it. The Neurosurgeon, Dr. Caceres came by to see me and as well talk to my parents about all the complications that could happen inside. THe representative from Liva Nova, Gabrielle Camaya flew in for my operation. He was about the only one telling my parents not to worry that everything was going to be just fine!

At 10:15 they took me in, mom and dad gave me a big kiss and told me they would be waiting for me on the other side of OR. We went to waiting room where we met my Granny, Aunty Kathy, Uncle Jack, Aunty Chrissy,and Mrs. Linda! I had quite the on site support group rooting for me. Dra. Castro walked by the waiting room and got to meet Kathy… Mom has been telling her about Kathy and Lindsay for years! Dra. Castro was going to be observing the operation and also be our inside spy! Once in the operating room she would write little messages to mom to let my parents know how I was doing inside! I have to say I did an amazing job in there. I handled the anethesia great, and Dra. Trinoski kept an ever loving eye on me. Dr. Caceres found the vagnus nerve wrapped the electrode around it and implanted the device on my left side. He is an amazing doctor. After all the hardware had been installed it was time to sew me back up. The surgery all in all took about two hours from start to finish. I had no problem breathing on my own after the breathing tube was taken out. The surgery was a success! I am so grateful for the amazing team of doctors and CIMA Hospital for all that they have done for me and my family. Mom and dad were waiting for me and I woke up to them staring over me with big smiles. We waited in the post op room for about a hour and then it was up to my room. Everyone came by to see me. I was groggy and a bit out of it but overall I did really well and was off oxygen and doing good. The doctors wanted to keep me overnight for observance only. The following day I was able to leave the hospital after Dr. Castro discharged me.

We headed to the hotel where we were staying before surgery and made plans to stay there a few days more! Dad and Jack went back on Sunday to our home in Delicias. The following day granny left for Texas, I was so happy to have her here with me during the surgery. She almost missed it so we were all happy she could stay and be with us. On Tuesday, Roxy, mom me and Kathy headed back home so I could recuperate in the comforts of my own bed! It was a long ride home but I did really well in the trip and the following day I slept in very late.

We are all so happy the surgery is over and so grateful to the doctors and hospital CIMA for everything they have done for us! We are so very blessed. Hoping to have continued progress and poistive news for you! We head back to San Jose in two weeks to turn the device on! :) Thanks to everyone for all your prayers, love and support!

Love Malia

Ella and Me

July 24th, 2019

It was so great to have Ella here visiting us. I adore her and cherish her friendship. She is like a sister to me! I sure do love her mom and dad too… We wish they could come more often to see us as we always have fun!
xo Malia

July

July 24th, 2019

July has almost come and gone. Many things have gone on this month. Roxy of course came back to work for our family and wil be staying until the end of the year. Thank goondess. We all love our Roxy. The VNS device has been in Costa Rica since June 19th and I have yet to get a date for my surgery. We are all having to be very patient. The VNS device was donated it is very very expensive. As I had mentioned before in my blog posts, in order for the company to donate the device the doctors and the hospital had to donate their services as well.. This accomplishment TOOK FOREVER and now that the device is here it is taking forever for the doctors to agree upon a date to operate me. Three doctors will have to be in the operating room. The neuro surgeon, the doctor whol calibrates the device, and the anthesiologist. We thought for sure that the surgery would happen this month but it is not going to happen now until maybe mid August. We just have to patient. It is hard to be patient though, as two weeks ago I had a gran mal seizure that took would not stop. My dad and Roxy were home with me when it started mom was at work. Dad called mom and said to come home. When she got home she dad and Roxy had already administered two bottles of Dormicum rectally. They are only allowed to give me three. Mom administered the third one. Still no change. My seizure had not calmed down at all. Mom called the neuro and he suggested she give me a intramuscular injection and use anohther half of a bottle of dormicum.

Roxy being a nurse knows how to give shots. The entire time this was going on Roxy was very calm and in control. Roxy gave me the shot and within seconds the seizure stopped. Everyone cried when it stopped. I was exhausted the seizure had lasted just over an hour. Dr. Luna told mom it was time for her to learn how to give shots to me. Roxy isnt alwasy around and has weekends off! Two days later another mean gran mal seizure hit me. Roxy was there but was leaving for the next four days to go home. Mom asked her to show her the way. Roxy explained and mom gave me the shot. I could tell mom was nervous but she did a great job and again within seconds the seizure stopped. Before the medicine used to work rectally but now it just doesnt seem to do the job. Injecting in intramuscular goes faster into my bloodstream and the medicine can work quickly. Thankfully on this day, one bottle did the trick. Mom continued practicing with a lime she told me it has the same sensation as my booty!

It’s been two weeks since the shot episode, I have continued to have seizures daily but thankfully hot any that have required my parents to use the dormicum. So even though patience must be had when it comes to a surgery date for me it is hard for my parents and Roxy to see me go through so much daily. We just keep praying and know that God will figure it our for us. Any extra prayers anyone would like to send my way would be great. <3

Love Malia xoxo

VNS has arrived to CR!

June 30th, 2019

Two days after my birthday my mom got the great news that the VNS had cleared customs and arrived to Costa Rica. We are so excited. It has taken so very long to get it here with all the approvals, paperwork, and bureaucracy! Hoping to get the VNS surgery soon. It’s just an ongoing battle with the seizures each day. It gives me alot of hope to think that maybe just maybe this device is going to change my life.

Will keep you all posted as soon as I have a date. Hopefully it is soon!
Love Malia

Mi Cumpleanos!

June 30th, 2019

My dad and I had a great birthday bash together this year! I turned 11 years old on June 17th! We had such a great time and our theme this year was Pirates and mermaids! Almost everyone this year dressed up! I overall had a pretty good day.. A few seizures got in the way right before the big treasure hunt, but I managed to shake it off and particpate. The hunt took alot of preparation and planning. Roxy and my dad worked very hard on it. There were maps to be made, empty glass bottles to be filled with hints, and of curse the hiding of the treasure. Genesis Ella and Gabriella were on my team. We had alot of ground to cover to find the treasure.. During the hunt one of the hints were to find two presents and give to me. My team was showing me the map and hints and then off we would go to find another one. We finally made our way back to the house and Genesis found the hidden treasure by the pool! :) Inside were lots of gems, golden chocolate candies, mermaid key rings and tatoos! Roxy had made every single gift bag with cutout glittery sea shells that she drew and cut up! She is so talented! I love my Roxy. After the hunt we had to bust open the pinata, dad helped me swing the bat and I did good job hitting it! Ella had the final hit and broke the pinata open and out fell all the candy onto the ground.

Our dear friends Andy, Krystal, and Diego came to celebrate and helped all weekend with the preparations. They were such troopers my mom was doing a good job of bossing everyone around! Ha ha! Hoping this year is going to be one of my best years ever as I know as soon as I get the VNS surgery I am going to get better control of my seizures.

Love Malia xoxo

New girl

June 30th, 2019

We picked Roxy’s replacement. She started June 10th, Roxy would be training her all week and then Sunday was my big birthday party! For the most she did pretty good with me. She had no real experience in physcial therapy but my parents and I decided that if she was willing and had the desire to learn she would grow and gain her experience with me.

The following week when she was on her own was when things did not really go so well. She did not seem to obtain information from her week of training with Roxy. She did not talk to me the way the other girls did. I did not feel very comfortable with her. In short, she lasted three days. We are very grateful and blessed that we realized sooner than later that she and I were not a good fit. She left back for San Jose on Thursday. Mom had called Roxy earlier in the week and asked her to please come back and she said YES. It’s so good to have Miss Roxy back! She and I are a great team together. In my 11 years this is the first time a new girl has not made the cut. Roxy is so kind and sweet and is willing to stay on with us until the end of year and we are all very happy about that!
Love Malia

Roxy

June 1st, 2019

A few months back Roxy let us know that she was ready to move on and find a nursing job at a hospital. Roxy and I have built a great friendship over the last year and 8 months. She is so sweet to me and I know she loves me very much. We have lots of fun together and we have become quite the artistic team. There always comes a time for everyone to move forward in their lives and we understood that Roxy needed to begin her nursing career.

For the last two months mom has been doing interviews with different women to see who will be my new friend. We had hired one girl on the spot. She did a great job with working out with me. My parents decided that we needed to go back to working with a physical therapist. I need to be pushed and continue to try out new exercises. Cynthia was supposed to start on May 6th. It would give her three weeks to get everything in order and quit her current job. It was two weeks later when we received a call that she would not be able to accept the position. Her dad had become ill and she needed to take care of him and give him physical therapy. It was a bit of a shock. My parents were relieved that at least she did not take the position then have to leave here without us having a replacement girl. Sometimes things happen for a reason so we took that as a sign and back to interviewing more girls.

My mom had made the job description very detail oriented listing all the duties that come with the job.. We didn’t get as many applicants as before but we did have the opportunity to interview 4 more girls. Mom would first read their resumes then she would send to Maria Jose for a quick look over. The next step would be a video call and if that went well they would come out to Delicias and spend the day with me seeing what my daily routine entails. They would have to work out with me on the floor. Maria Jose was also speaking with them after mom’s first phone interview so that they could compare notes about each girl. We have two girls coming out in the next few weeks. We shall see who gets chosen to hang out with me!

I want to say to Roxy, thank you for loving me the way you do and for taking such good care of me. I know we will be friends forever and I wish you all the luck and the very best in your new endeavors.
Love Malia

update on vns

March 31st, 2019

During the time that my grandma was visiting we received the great news that CIMA would donate the operating room to me for my surgery! What emotion for us all. Mom could hardly believe it. The private hospital which generally is always about making money had told us YES! Yippee!!!! So exciting. Now the process of the application can begin…. It took a while to get everyone on board. Three weeks went by before mom got the letter from the Surgeon agreeing to do the surgery and the letter from CIMA saying that they would donate the room. Finally it came together and mom had everything she needed to send off to Liva Nova, in the United States. Keeping our fingers crossed that the VNS device get here soon and I can get my surgery scheduled.

Love Malia

good times with grandma!

March 31st, 2019

It is so awesome to have my grandma Marg here! She flew in all the way from Kitimat, Canada to see me. She will be staying with us for three weeks. I am sure we will be making cinnamon buns and having lots of fun. Grandma, like granny likes to read me books and hang out with me. We went to the beach a few times with her, and she and I got to watch COCO together. My grandma is so sweet to me and spoils me rotten.. We love having her here. Grandmas in general are the best ever!
Love Malia

February

February 28th, 2019

The month of February passed by in a flash. I had a pretty decent month. What bothers me most are the seizures. Since Liva Nova has offered to help begin the process of the donation of the VNS device my mom’s job was to find the doctors and a hospital to donate as well. In order for Liva Nova to donate they request the doctors and the hospital donate their services and operating. Since the device costs $20-$25K I can understand why they request everyone to come on board and donate.

Since I am Tica,(Costa Rican) my mom decided to ask the Children’s Hospital in San Jose. In Costa Rica, there is a social system where medical attention is free if paying your monthly quota. I have been paying into the system for nearly 11 years now and mom did not think it would be a problem to have the surgery done there! We also donate to them each year either to the Intensive Care or Respiratory Care department. You probably will remember I stayed inside ICU for 6 weeks while fighting for my life. Remember we donated a couch and nice chairs for the parents who have to wait outside of ICU since when mom and dad were there it was metal chairs. She called my neurologist who works at the Children Hospital and is on the neurology board. This is an ambulatory surgery that takes maybe 2 hours at most. My neurologist said she would speak to the board at their next meeting. They meet every Tuesday.

We were anxiously awaiting the news the following day and when mom called Dr. Hernandez she was not very happy when she hung up. Even though we had previously been informed that I was not a candidate for the VNS at Children’s Hospital for my poor prognosis, we did not think the hospital would tell us no on using the operating room even though we had the VNS device donated. It is always hard to take news like that. How could my life not be validated? Seizures can kill. Did we take no for an answer? No we did not.

The following day, mom made an appointment in San Jose, with the pediatric neurosurgeon. He was one of the doctors on the neurology board that had said no. We made the appointment so that we could see him face to face and that he could say no to my face. I was tired as we had just made the long trip to go to San Jose so when we entered the office I was sleeping. The Doctor was surprised to see us. We began asking questions as to exactly why we were told no. His answer was simple. He told us that we did not follow the rules. How do we not follow the rules? Basically we’ve been paying into the social service system of Costa Rica since I have been born. We do not however see doctors routinely there. Thankfully I have private insurance that covers my appointments. As with any social service, it takes time to make appointments, and one can wait hours to see a doctor. Bottom line is that it is not convenient plus I risk getting sick every time I go into any hospital. Hospitals with sick children everywhere is not the best place for me. The doctor was not happy that we were not being seen inside the Children’s Hospital. My neurologist I see outside of Children’s she also works full time during the week at the hospital. She understands why I don’t see her on the inside. Anyway, we did not agree with him and his reasons why. What difference should it make? We pay into the system, and by not using it frequently other children who do need it are better served.

After listening to all the risks of the surgery….Trust me, he would not stop talking about every possible thing that could go wrong. We also were trying to convince him that hey, my life is worth something and if I could achieve a 50% seizure reduction, it would not only help extend my life but give me a better quality of life. Mom point blank asked him would he donate his services and do the surgery for me if we found a hospital to donate the operating room. It took a few minutes for him to think about it, but finally he said yes. That was a pretty huge thing to get him to come on board and say yes to donating! At least he didn’t charge us for the visit which was very nice of him. So our new mission was to find a private hospital to donate the room. We had both the doctors, now we just need the place.

The following day, mom went to CIMA. You probably know through reading my blog that CIMA is my hospital. I have been going there since born and Dra. Castro works out of this hospital as well. Dr. Castro had spoken to the medical director about my situation but she did not get a real answer from him. My mom went to the office of the Medical Director and sat outside his office and waited for him to come back. When she met with him she told him the story. He was surprised that CHildren’s hospital had turned us down. He listened intently and said that he was not the sole decision maker, but to let him talk to the CFO and he would get back to me. He was a nice man and at least did not turn mom away. Mom left my picture with him so he would be reminded by my cute face! :)

We went home the following day with hope that we would be hearing back from CIMA soon.
Love Malia