Archive for February, 2021

Emergency Trip

Sunday, February 21st, 2021

Last week I began to cough more than normal. You see having Lissencephaly/Miller Dieker I fight against my own secretions but I have to say though I am a good cougher! On Thursday I had a slight fever. It is not abnormal for me to run fevers occasionally. Kids with Liss sometimes get a lung plug. A plug is when your lungs get a build up of phlegm that needs to be coughed out and if it is not coughed out it can cause pneumonia. Since I get respiratory therapy three times a day my lungs normally work like a well oiled machine. It was not uncommon for me to have this slight fever my parents just considered it be another plug and I would cough it out.

As much as my parents try to take good care of me and keep me Covid/Cold free sometimes things just happen. Thursday night I coughed all night long. Mom every five seconds was suctioning me and I had a horrible night as the coughing did not allow me to sleep. The following day I had fever and continued to cough. My mom called Dra. Castro and she suggested an OTC cough suppressant. It helped immediately and my coughing slowed down. The fever went down as well. That night on the couch I had a seizure a big one that would not stop. It took two bottles of Dormicum (Midazolam) and the seizure lasted an entire 40 minutes long. I was pretty much knocked out for the rest of the night.

I slept with oxygen that night and Saturday morning at 4am I was very uncomfortable and thrashing around in bed. Mom gave me a nebulizer treatment to help me breathe but then I began to tremble and shake; my temperature had raised almost 4 points in a matter of an hour. I was at 103.3. My mom and dad covered me in wet clothes. Mom was anxious as I never get a fever that high, and we all know with high fever comes seizures and that is exactly what happened. My eyes rolled into the back of my head and my entire body went with stiff into a gran Mal seizure. Petrified of giving me dormicum, mom went to prepare the injection and dad stayed by my side coaching me on and telling me it would stop when we all knew it wouldn’t. I was on the maximum amount of oxygen that my machine allows and Dormicum is a respiratory depressant. Things could go south very quick but thank God they didn’t. There was a lot of praying going on. Mom injected, I stopped 7 minutes after, and the packing intensified so that we could get me to CIMA emergency room, catch a ferry on time, and all a mere 5 hours away. We considered a plane, but in reality my oxygen was already low and flying in one of the commuter planes that are not pressurized it really was not an option. I have to say I did incredible on the trip; I didn’t cry, complain, just made the road trip to CIMA knowing I would be received by some of the best.

We arrived ER at 1pm after taking the 10am ferry. Dr. Zuniga, ER Pediatric doctor of CIMA, who has known me for the last 12 years received me. When you know Dr. Zuniga is taking you in at the doors you know you are in good hands. Mom had already called Dra. Castro and she let him know we were on the way. Once inside we went straight for blood work.. First was get an IV set up in case I needed antibiotics, second lung X-ray, third nasal suctioning for a complete panel test of viruses including the dreaded COVID, fourth respiratory therapy and another deep nasal suction into my lungs to pull out any phlegm that may have been sitting down there too long.

Amazing all results were back in two hours. Diagnosis: Rhino Virus, Pneumonia left lung, possible sepsis for high PCR and Procalcitonina (levels of bacteria in blood) overall not a good report but then not a bad one either. Even though my parents are super cautious and take extremely good care of me, there was the underlying fear of Covid 19 and it was negative. THANK YOU GOD! After my respiratory therapist saw me, I received a good dose of Rocephin through my IV. Dr. Zuniga said I would need to be on it for three days.

After over 5 hours at ER in CIMA we were allowed to leave with my IV tightly wrapped on my arm and we headed to our Aparthotel in La Sabana Sur. We like staying there as the staff are always so kind to us and it is a perfect spot with a kitchen and living room. Anything is better than being admitted into the hospital! 😉 Thankfully Dra. Castro and Dr. Zuniga discussed whether to admit me or let me go. End result….. was simple my parents have a small traveling hospital, and are always on top of me so we were allowed to leave the hospital.

Over the next few days I was to receive two more doses of Rocephin. One of my nurses that has known me for years agreed to come to the hotel and administer my antibiotic intravenously. She is an angel that is for sure and has helped us out on so many occassions. Carmen has a such a kind heart and has always helped us no matter what the time or situation.

On Monday night, my dad went out for some takeout. There is a really great Chinese restaurant right down the street from our hotel. My dad went to pick up a menu, on the way out he watched the owners nephew run right into the back of my Special Needs Mini Van… Yep…. that happened. Tail light, bumper, dent, etc…. Thankfully the owners of the hotel were super nice… Bought us dinner, paid for the damages and our mechanic for over 15 years got my van up and running in less than 26 hours. Simply amazing… This does not happen just anywhere and especially here. God Is GOOD !

Our last night in town, my favorite Dra. Castro came to visit me after a long day of work to listen to my lungs and check me out. She is amazing, sweet, kind, human being… Not all doctors are like her! She was more concerned at seeing me in her office and exposing me to germs so she took the time out of her busy buys schedule to come and see me at my hotel at 7pm. My blood work had come back earlier that day with better results than before… Dra. Castro gave me the green light to go home and I was to continue oral antibiotics for the next four days… We made the ferry, picked up my repaired van, and headed home…

So blessed… so grateful. So loved.

Love Malia