Make A Child Smile

Joshua's Story
written by mom Vanessa

Despite minor complications due to toxemia during my pregnancy, Joshua was born healthy on Thursday, September 19th, 1996. My doctor worried about a smell at delivery and ordered IV antibiotics for Joshua. Three days later, we went home from the hospital with his daddy & older sister, Steffany.

Joshua grew normally and seemed healthy and happy. He had lots of love from an extended family. His father is a widower whose first in-laws "adopted" us all. Joshua enjoyed fishing and played all kinds of sports – especially football & baseball from an early age. He was quiet and slow to open up to new people. Everyone commented on how well behaved Joshua was.

In pre-k and kindergarten, Joshua's only problem was a failed hearing test. We were told it was likely due to a head cold. But when he failed again the next year & the next – we had him thoroughly checked - and discovered Joshua has a significant hearing loss in the high frequencies. He can hear most sounds normally, but combination sounds like ch, sh, sp, sk, and th- he cannot hear. He was prescribed bi-lateral (both ears) hearing aids to help.

Another early symptom - Joshua sweats a lot – despite the temperature. We all noticed it, but did not think much of at the time. Joshua’s 1st grade teacher told us he was having difficulty with basic reading and math skills. We assumed his trouble was due to his hearing loss.

At the end of 1st grade, we moved from West Texas to the San Antonio area, and Joshua was held back to repeat the 1st grade. Still, Joshua’s learning difficulties continued.

Therapists at school were evaluating him to decide on modifications in his learning, when, in February 2005 Joshua came down with a throat infection. Joshua saw a doctor, took antibiotics, got to feeling better and his temperature went down, so he went back to school. But he came home and fell asleep on the couch, refusing to wake even for dinner or favorite activities.

A bath roused him; but when he got out, his legs got so weak he fell down right in front of me. I picked him up and noticed he was running a fever. We took him to an emergency clinic thinking maybe the infection had come back. A doctor there noticed Joshua’s lips and fingers turning blue and tested his blood oxygen saturation level. Normal results in this test would be 98-100. Joshua’s was 50. He was gravely sick, put on oxygen and rushed by ambulance to a hospital.

Joshua pinked up with oxygen, but was admitted to the pediatric intensive care unit (PICU) for further tests. By morning, Joshua went into respiratory arrest and had to be revived several times. Doctors - with a great deal of difficulty - put a tube down his throat so a machine could breathe for him. Clergy were called in. Luckily, they got him stabilized.

Joshua remained in the hospital’s PICU for two weeks in 2005 – the week before and week of Spring Break. Nearly every test came back clean. Then suddenly, Joshua lost control and feeling in his left arm and leg, and he had a seizure. Doctors’ best guess at the time was that Joshua had an auto-immune disorder that had come on with his throat infection. They thought it caused his body to produce anti-bodies to fight the infection, and once they killed the infection, they turned on his respiratory system. Doctors treated him with high powered IV steroids. A few days later, it seemed to be working, and Joshua got feeling back in his arm and leg and was able to be weaned off life support.

Joshua did so well so quickly, he convinced doctors to send him home only coming back for outpatient physical and occupational therapies. He breezed through them and went back to school.

He seemed normal again, with the exception of weight gain, mood swings and a deep scab/sore on the back of his head with hair around it falling out. Doctors said it could have been from pressure in his brain when he went into respiratory arrest. The hair never has fully grown back in that spot.

Joshua spent the summer of 2005 trying to lose weight and exercising a lot. He played coach pitch baseball, even though he missed the beginning of the season in the hospital.

Two weeks into the new school year, Joshua complained of a sore throat again and became lethargic (overly tired). I took him to a doctor who found his oxygen sats were dropping again - already to 80. Headed to the ER. His sats dropped to 68. It was more oxygen, poking around trying to start an IV, then the hospital staff suggested we go by ambulance to another hospital in the area – Methodist Children’s Hospital. Joshua was admitted to another PICU.

Joshua again had to be intubated and hooked to a ventilator because his carbon dioxide level was so high. Doctors ran more tests.

We learned a few new things – doctors looking at MRI scans from the first hospitalization told us they showed Joshua had suffered infarctions (strokes) but it appeared from new scans that there were no new ones and the earlier ones were healing. A new specialist came and excluded auto-immune disorder as his diagnosis. Still, they could not pinpoint what was causing his breathing difficulties.

His lung doctor went online looking for help in making a diagnosis from doctors around the world – hoping someone else recognized it. Luckily, someone finally did. Josh has Central Hypoventilation Syndrome. It is rare – but most patients with this diagnosis show symptoms from birth. Since Joshua did not have breathing troubles before, they decided his was Late-Onset (really rare). He also has some symptoms involving his hypothalamus (a small organ in the center of the brain that controls things like body temperature, hydration, and growth & development).

Doctors realized Joshua would continue to need a ventilator and asked us to consider having a tracheotomy done (tube inserted through the neck into the trachea). The ventilator tube hooks to the trach tube so the machine can breathe for him when he sleeps or gets sick. So far, the vent tube was in Joshua's mouth, making it impossible for him to speak or eat. Anxious for him to talk again, and to enjoy birthday cake and ice cream on his upcoming birthday, we agreed.

Joshua was still in the PICU on his 9th birthday – and in isolation - because he had developed a staph infection around the newly placed trach tube. Doctors and nurses had to wear gowns, gloves and masks when they came in to see him. Sadly he wasn’t yet ready to eat cake or ice cream on his birthday.

When Joshua came home two weeks after his 9th birthday we had to bring the ventilator, pulsoximeter (to monitor his blood oxygen level), apnea monitor, suction machine and various medical supplies. I had to quit my job and learn how to care for him with all the new equipment.

Josh also needed a qualified one-on-one nurse for school. So, his doctor ordered homebound school services to give the district time to find and hire the right one. A teacher made homework deliveries, but Josh needed extensive help with his work – so I also acted as his teacher for months.

Joshua’s pulmonologist thinks he would benefit from an implanted diaphragmatic pacemaker. It should help him take bigger breaths. He needs to be evaluated by a specialist in Chicago before that procedure can be done.