Archive for July, 2018

July Flew By in a Blink!

Tuesday, July 31st, 2018

July flew by. I had many issues with phlegm and seizures. Some days all I would do is have respiratory therapy, and constant suctioning with the machine. It is very stressful to have to deal with so much phlegm and as well to have something stuck down my throat the majority of the time. I know it doesn’t sound pretty but it is the truth and reality about my life right now. Mom doesn’t understand how this happened… Why now do I have to battle the phlegm so many other kids like me since birth have had this problem but I didn’t until now.

We still continue to look for a drying agent one of the medicines that can help dry up secretions. We haven’t really had any luck with that! We have had friends look in Panama, Mexico, Brazil. One weekend when my cousin Tressa and her family were visiting I had a terrible experience with the phlegm and seizure combo. My mom was brushing my teeth.. She always brushes the roof of my mouth it helps me to cough and I was in dire need of a good cough! Just at that time that I coughed and mom began to suction me I went into a gran mal seizure. This time though this horrible, complete body convulsing seizure would not stop… My parents gave one 5mg bottle of Dormicum which should do the trick and get it to stop and nothing. Then she gave me another bottle and still it would not stop! Mom was on the phone with the neurologist to find out exactly how much more could I receive. It was going on over 30 minutes. I heard mom call Life Guard and ask for an ambulance and for a plane to come to Tambor to pick me up. The main problem with giving too much of this sedative is that I can go into respiratory distress and stop breathing.

My dad was kneeled down on the floor next to me telling me it was going to be okay. He kept telling me over and over again how strong I am and that I can kick this seizure butt! Mom called Roxy she was out with friends in Montezuma so she called Maritza to come help us pack up it looks like we will be taking a emergency flight to San Jose again. Mom was so nervous to give me the third bottle, but the neurologist said that I could handle one more bottle. We have NEVER had to give so much drug to get my seizures stop. I was currently in what is called Status Epilepticus. Meaning not being conscience while having a seizure and unable to stop. Prayers went up for it to please work and stop. The third bottle was given and after 15 minutes later it finally stopped. Thankfully mom called and cancelled the flight and the ambulance. I was exhausted and drugged and slept for a good while.

My parents keep thinking that the added seizures are fault of having so much phlegm. It is so stressful for me. So last week we decided to try cutting out a new formula I have been using it mixed with another formula that I take since January. We thought maybe it could be allergies. We cut it out and to be honest I am better! I actually was able to enjoy the weekend with having to have hours upon hours of respiratory therapy! My parents were super happy too as we could go strolling and I was not having to be on oxygen at all times. I still have the phlegm but it is not as bad as before! Hoping that this new change helps! I have to get better as I have a trip to Texas to take in September! Keep me in your prayers!
Love Malia