April 23rd
You are not going to believe this story. We arrived home from San Jose on Wednesday. (Remember we had just spent ten days there recuperating from another urinary tract infection.) We had a good rest of the week. I had good workouts with Irene and on Sunday our friend’s Piti y Miguel called us up and invited us over for a day of swimming, food, and fun.They told my parents we deserved a day of being spoiled and we all thought it was a grand idea! It was a beautiful day and the sun was out shining. We got there early so that I could go swimming and dad and Miguel were smoking fish in Miguel’s smoker chimney. It was an experiment the two of them had been talking about for a long time.
Mom and Irene got me ready for the pool and we went in for a dip. Once I was in the pool all of a sudden I started to sound real phlegmy. Mom did not like the sound or feel of my lungs and got me out of the pool. We did a little respiratory therapy and I was fine and went on to have lunch. The rest of the day went fine. I never took a nap though and I had been up since 6am and I normally always have a nap. We stayed till sunset. When we arrived home mom gave me some more therapy I gave a good cough and my lungs were clear. All seemed well.
That night at around 10pm I began to get fussy and started to have a seizure. It would not stop so mom and dad brought out the diazepam. Normally the valium works but this time it did not. An hour later mom called Dra. Castro and said that I had not stopped seizing. She told mom to give me another dose of diazepam. It did not stop the seizure. By this time it is midnight and mom calls my neurologist at home on a Sunday and if you can believe it he answered the phone. After mom explained to him what is going on he says that it would be better to give me a double dose of Valium but intramuscular. Well mom was not sure how to give an intramuscular shot nor dad so she called Irene. (Irene lives behind our house) It turns out that Irene knows how to give an Intramuscular shot. Now mom and her are searching for the right size syringe. It is close to 2am now. My body just keeps jerking around. I am very uncomfortable. They way I am moving is like I have ants in my pants. It is not my typical type of seizure but then I have been having different types of seizure these days and everyone agrees they think this is a seizure. It is hard for my parents to be doctors out in the jungle. They trust very much their gut instinct.
Irene is ready with syringe in hand. They all looked at each other and agreed that we were going to take the doctors order and give me the double dose. My parents are worried about giving me another dose of valium. It can depress my respiratory system as it has once before. Deep breath……………. then bam Irene gave me the shot and I did not even wince. Something else is bothering me greatly. I wish I could tell them that in reality this is not a seizure that something else is wrong with me. After the injection of valium you would think that I would be sleepy, that I would stop moving, that with the now four doses of valium that I would totally be knocked out! Well guess what? It did not phase me not even for a second.
It is 3:30am, mom is now on the phone with the insurance company to see if we could get an air ambulance to come and pick me up. The last time we had to pay for my airplane ride into San Jose it cost $5,000. Mom wanted to make sure the insurance company would pick up the bill this time. After many different discussions with the insurance company we now have to have a doctor from out here come and evaluate me and make sure whether or not it is true that I need to be flighted into San Jose. The ambulance driver and doctor arrived at the house at 5am. The doctor looked at me and I was still thrashing on the bed. He had no problems signing the form needed for the insurance company. At this time mom and dad have packed everything up and we are on our way to the Tambor airport.(a rural run way strip that the plane takes off over the ocean) The plane was to be there at 6:30 am to pick me up. We arrived at 6:15. There was no plane at 6:30 nor 6:45 am. Mom calls the insurance company again and they ask her why she has not faxed over the form that doctor signed at my house at 5am. Mom says what??? Are you kidding me? Do you think we have an office depot out here that I can just run and fax to you? Cant we do the paper work at the hospital? This is am emergency! She says “Where is the plane”? Well it had not left yet and did not leave until almost 8am. Once the plane arrived and we were in the air we were in San Jose in 17 minutes. It was a fast plane. I am strapped to a gurney and not happy about that and continue to thrash around. Mom is still fuming about how long it took to get me my airplane!
We arrived by ambulance to CIMA emergency at 9:15 am. My parents are looking at each other in disbelief that we are here again and so soon. It has only been 4 days since I left this place. There was a new emergency room doctor that we did not know but Dra. Castro my ped had called her to let her know what tests to run on me. It was the usual blood tests and urine tests but since I had been crying so much I sounded really junky in my lungs so they took an xray of my lungs as well. The blood and urine test came back fine but the xray showed infiltrates in my right lung. This means pneumonia. Dr. Zuniga the ER doc we know arrived and came back to tell us I had broncho pneumonia. Mom and dad are just staring at him in disbelief. Looks like I am getting admitted to CIMA again. Dr. Zuniga also looked at me and said that what I was doing was not a seizure but Extrapyramidal Symptoms. It is neuro related and basically a feeling of motor restlessness probably brought on by me being ill. Thank goodness it is not a seizure. My parents thought I was in status epilepticus again where my body is in a constant state of seizing and all kinds of damage can be going on.
Dra. Castro arrives to emergency. My parents tell her that I have not slept for 32 hours straight. I am still very uncomfortable. Dr. Castro tells my mom to give me a little chloral hydrate. Mom gives me 2.5 cc thinking four doses of Valium have not phased me maybe this will work. She gives me the Choral Hydrate, and within seconds my O2 is plummeting. I was already hooked up to the O2 at the hospital but my O2 continues to drop 95,90,85,80,75 then I hear my mom yelling for the doctor. She and dad are having flash backs to when this happened to be and I ended up being on a ventilator and in ICU for six weeks. The Dr. comes in and puts a face mask on me of O2 and slowly but surely my O2 begins to rise. The Chloral Hydrate diminished my breathing big time! I am however finally asleep after now 36 hours of no sleeping!
The doctor in ER decides to send Yeudi the respiratory therapist in to give me some therapy on my lungs. Before even working on me he sticks a hose into my nose and into my lung and pulls out some gunk to send off to the lab to see if my pneumonia is bacterial. That really hurt and guess what? So much for sleeping I woke up with a hose in my nose and began to scream again. Mom and dad are not happy and neither am I! It is taking forever for us to get admitted upstairs and into a room. Finally by 1pm we got into a room and I was able to rest a bit. Dra. Castro says I will be in for the week. How depressing! 🙁
Love, Malia