update,
I finally got a laptop and im able to do more and update more. Roy is currently fighting the flu! Its a long story but he is at another hospital now. He was checked in free and clear of any flu and got sick at the hospital even after having the flu shot! He was discharged on Jan 22 and came home but as quickly as we thought things a turn for the worse. he began to desat and was on oxygen the entire time. he vomited the next day once and by Friday night was vomiting more so I called 911. when the paramedics arrived they said it sounded like pneumonia and we took him to the ER. they told us he had aspirated pneumonia and needed to go back to UC Davis. I did not want him to go back because we got treated so bad. so I decided to have him go to children hospital of Oakland. we was flown in while me and my husband drove. when I didn't get a call from the hospital I called. I was told he had to be put on a vent! I was worried sick he had stopped breathing upon arrival. I didn't understand this entire time he had been breathing without the vent. The night he arrived home we had an RT come show us how to use the IPV because the hospital never showed us how. The RT noticed right away our son had shallow breathing and he said that he needed a vent at night. the company called the hospital and made their recommendations and I called them too and said he needed the vent the hospital denied it and said no because he had been off for 30 days!! So there we were Friday night in an ER in a children hospital being told my son needed to be on a vent and was on one now. As the doctors began to run blood test and urine test more came to light. just put it this way he had high blood gas levels his kidneys were overcompensating and working extra hard to breathe. he had a UTI they did an ultra sound he has kidney stones. They did the ultra sound because they said UTI in boys is not common. so they wanted to see why. he had UTI at davis before and not once did they check his kidneys. my poor son went 5 months without the proper care. he is not in the ICU any more and has began to get weaned off the vent. but the stone remains and he is fighting the flu now. we are being told that his body reset. His blood gas levels are continued to be checked as he is being weaned off the vent. He also had his eyes reopened they removed the sutures. his left eye was even red the day he was being discharged and I mentioned this to the nurse and they did nothing. at the childrens hospital they did a procedure with a membrane some new technology and his eye is better now. it healed without a scar. he had an ulcer in his eye. UC davis discharged my son with poor breathing condition high blood gas levels lethargic with a kidneys tone and urine infection not enough supplies or proper discharge plan. it has been hard to get our son back to a stable condition. all I can say is that our son Roy is one tough kid. with all that was going on and he kept fighting.