July 2
The time never ceases to fly…. Especially when you aren’t doing so well! Recently I have been doing great by not having any seizures. My new medicine has been helping alot and we are almost two months without a seizure. I am very happy about this as it makes me much more alert and I can focus more on therapy when I am not having to deal with seizures. However, one side effect of my new medicine is an increase in constipation. I pretty much was having to have my mom help me go potty every single day. Everything inside began to harden and the next thing you know I could not sleep and was screaming out in pain. My hands were fisted and I began to grind my teeth severely. My parents called the doctor and after several days of trying to clean me out and I still was crying we made the decision that it was adamant to get me to San Jose. Nothing was working. My tummy is my cryptonite it can take me down in a second.
We arrived to San Jose around noon and went straight in for a xray of my tummy. Turns out my tummy was FULL! Dr. Navarro, the pediatric surgeon looked at the xray and told us that everything was going to have to be taken out manually. This would mean putting me under anesthesia. He also said to come back at 4pm in the afternoon to have the procedure done. From how he explained it, it did not seem like it was going to be such a big deal. My parents know him very well and he has operated on me many times so we trusted that it would all be okay.
My mom and dad and MJ were with me, and then it was time to get my gown on and go to the surgery room. Off I went with the two doctors and said bye to my parents. The procedure took about 40 minutes all together. My mom was waiting for me in the recovery room. Only one parent can come in this room directly after surgery! I woke up and seemed to be fine! I had to stay an hour in recuperation to make sure I was ok. I actually came out of the operating room without having to take oxygen. After that I was taken to another room where I had to wait another hour. The doctor wanted me to have something in my tummy first to see how I handled it. We ordered a papaya smoothie. It really did not go down so good. I began to cry and was uncomfortable after listening to some soothing music on my Ipad I began to calm down and was given the green light to go home. Our good friend Krystal is letting us stay at her house until I recovery. She is always very kind to us!
Once we got home, the doctor had told my parents to give me some food. It really did not go down so well. So they stopped gave me my meds and after that I did not have a good night. The following morning I was not well at all! I had nauseas, much saliva that I could not keep control and pain in my stomach. I was not a happy camper. By noon my parents decided that it was time for me to go back to the hospital that something had to be wrong. My mom was sure that it was the anethesia but the doctor said he did not think so! Once at the hospital we took an xray and I was full of gas! Not good because that makes my tummy hurt. Dr. Navarro gave me a liquid med up my nose to help with the nausea and gave me gas medicine and tylenol. I did not go to sleep until 4am. I am doing weird things. I am not myself. I am not looking at my parents or friends and I am just right out of it.
By Thursday morning I was feeling a tiny bit better but not much. I am not able to eat anything. I am on a liquid diet. I have lost 6 pounds. 🙁 Thankfully I had a good amount of weight on me! My parents tried to feed me again that evening and it just did not go well. I had a terrible night after the good. My doctors are thinking that might Nissen surgery might have come undone and that I am refluxing. My mom keeps blaming the anethesia. We went back to the hospital on Saturday morning. We did a gastro study to see if I am digesting correctly and to see if the Nissen is still in place. I was given a tiny bit of contrast liquid in my mouth I swallowed it well and then I was put on the xray table to see how everything was going down. Turns out everything is working perfectly and the Nissen is intact. So….. it turns out it was the anethesia and I had a terrible reaction to it, in fact for almost a week it affected me. I had been grinding my teeth so hard from being in pain that I gave myself a nasty ulcer on the roof of mouth that really hurt. Dr. Mermelstein my dentist gave me some gel to put on 4 times a day. It has been a very rough month!
Sunday night I slept all night long. I am a bit better.I am slowly begining to eat again. THanks to Krystal for being so kind and opening her home and heart to us. I will be going home tomorrow to fully recuperate at home.
Love Malia
