Did you notice what is missing in the photo above? That's right, he isn't attached to a ventilator. Unfortunately this is only a little break but it gives us a taste of what is to come. Milo has been given a preview of the freedom that awaits him when he able to rid of the ventilator. Yesterday we went to the hospital and met with Cloy (respiratory therapist) who gave Milo a new piece of equipment, a very small one that replaces the ventilator for a couple of hours each day, right now he get's to use it for 2 hours each day. It is called a carden vavle and it provides Milo with the constant pressure he needs to keep his airway open. His PEEP study from Monday shows that he has improved enough to be able to use this little valve. It has oxygen attached to it and it attaches right to the elbow adaptor on his trach so the only thing Milo has to drag around is an oxygen tube. It is so much lighter and we can make it as long as we want. Milo can now get anywhere in the house he wants to without having a big person hoovering over him pushing the ventilator. I think it's about as nice for me as it is for him. It took him awhile today to figure out that his range is much larger but before long I found him in the bathroom, at least he wasn't playing in the potty (yet).
Milo has huge ugly, nasty smelling granulomas (a type of scar tissue) surrounding his trach stoma that will be surgically removed next Wednesday. He will also have a bronchoscopy done since no one has looked down his trachea since the end of November. Hopefully he will have his g-tube changed at the same time because it has been leaking like crazy lately. After 15 months the poor little thing is wearing out and won't stay closed. Surgery is scheduled for 7:30 am so that means we have to be at the hospital at 5:30 am. If everything goes as planned Milo will be able to come home after the procedure, so let's all pray that Milo behaves himself. Of course if we have to stay at least we will be among friends :0)
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