Today Eddie has his appointment with the ENT at Children's hospital of LA.
It took me an hour to get out of the house. We got all loaded up and went on our way .
( this kid has a lot of stuff! )
We got there, saw the ENT, who looked over his sleep study, and his record, and confirmed that the first Supraglottoplasty did not work. We already knew this, but poor Eddie had another in-office laryngoscopy. The doctor stuck the scope down his nose, and looked at everything, and we got the "Yup, still severe" . He then said that he does not want to do anything until Eddie sees the pulmonologist at children's of la, Because Eddie needs an MRI of his brain, because half his apneas are central. He said that Eddie will need another supraglottoplasty, but he wants the pulmonologist there to tell him that he does. This time when they do it though, Eddie will be on a ventilator for 1-2 days after, and in ICU.
Eddie was referred to this Ent by the pulmonologist at Ceaders. He had said, that before the central apnea could be addressed, the obstructive needed to be taken care of.
Can we see where this is going? This is the THRID time this has happened.
I am very frustrated, because I feel like we are going in circles. I called Eddies pulmonologist , who told us to go with it, because he has no pull there, and it is best just to let theirs look him over , and say the same thing he did.
I cried most of the way home, and probably looked like a crazy person doing so. I am so mad, and tired, and feel very beaten. My rather immature, childish reaction is to want to scream and yell, but we have to keep plodding on. It's heart breaking , and it feels like we are getting nowhere. (never mind that it is draining on us as a family, both emotionally and financially )
In case you were wondering? Besides the mean nasty doctor sticking the camera down his nose ( and then promptly throwing up everywhere) Eddie wasn't bothered.
Seriously? I could learn a lesson or two from this little guy. :)
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