Aaron's was extubated from his ventilator Thursday and placed on a high pressure bipap mask (similar to cpap but stronger). He wears this super tight and restricting mask like the champ that he is. He complained at first only because he wanted to drink and they wouldn't let him. After using his sweetest sad face, the doctors couldn't help but give in. Every four hours, the respiratory therapist adjusts his mask and never forgets to bring a very small cup of cold water with him.
Despite several attempt to wean him off the mask, Aaron's lungs cannot handle the decreased pressure settings. Aaron's lungs have significantly improved on X-ray and the doctors are pleased.
The problem lies with his kidneys.
He is barely peeing and has gained over ten pounds of fluid in two days. That is a lot for a 35 pound kid. The fluid is now what is hindering the lungs. Ugh!
Yesterday, he began daily three hour dialysis treatments. The dialysis can take the fluid off no problem. However, his current phoresis line can not handle the dialysis. Today he will have a new dialysis competent central line placed. Hopefully by tomorrow he will be in a better place and he can start to take off his bipap mask.
Although Aaron has peed (hallelujah), his kidney are in bad, bad shape. He only pees once a day. Aaron has bounced back from EVERYTHING (which is a whole lot of stuff) thrown at him in life. He can bounce back from this too. It will probably take weeks to months to years for his kidneys to heal.
Aaron has slept about 22 hours a day the last two days. My diet has consisted mostly of chocolate, a very bad coping mechanism. I try to justify it by exercising 1-2 hours a day. In between eating chocolate and exercising, I read or play brain games on my iPhone. Any suggestions for mind-bending apps? I am so annoyed with my free time. When I am home, I would kill to have an extra hour or two to get things done. Now I sit here stroking my son's hair and doing nothing else productive.
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Location:Cincinnati children's hospital