Just posted at VEPTR

I just posted this at the VEPTR site hoping that they might have some ideas, I would love to know what they would do if they were in my shoes.

Ok this really sucks that I have to write this all over again I thought I posted all the info somewhere and could copy and paste but no luck. Any ways...

Rhett went in for his normal expansion on 10-1-09 and he was sating 88 pre-op, which for him is really really bad. He needs to be above 95. So all the doctors checked him out and nothing was wrong with his lungs so they thought. everything sounded great so they did the surgery and everything went great, but he still couldn't get his sats up. I have to ask them for a x-ray because my mommy feelings were telling me something was very wrong and it took everything I had to get them to do a x-ray. The x-ray was great nothing was wrong, by this time I had also called his pediatrician and was trying to get him to understand that something was wrong. He kept telling me that it was his asthma, which I knew it wasn't because he had no signs of that at the time. The doctor at the hospital said that they were not going to keep him just because his sats were low, and sent us home with Rhett on oxygen on 10-2-09. So I had to take him in for another x-ray on that following Monday(10-5-09) at his doctors office. Where we found a little fluid around the left lung and they said as soon as that clears up then he will be fine. ha ha ha yea right! Any ways then I was wondering if that was the case then why was his sats low even before surgery? That doesn't make any sense to me. Well I monitored him really really close and by Wednesday 10-7-09 his sats were in the low 90's and he was breathing really hard so I turned up his oxygen to 1 1/2-2 liters and then he was sating at 98 but his breathing was still very labored. His heart rate was 130 and he was breathing so hard that his whole bed was moving. I couldn't take it any more and took him to the ER at 12:00 at night. They told me that they were not going to send us home until they discovered what was wrong. We were in the trauma bay for 6 hours. During that time he had another x-ray and it was the same as all the other ones there was really nothing but a little fluid around his left lung. We were finally sent to a room and then we had a pulmonary doctor come and see Rhett before 9 am and his normal doctor did too. Man we were tired! Well they wanted to get a PFT(pulmonary function test) done that day and they were going to notify cardiology that we were there since I was told that if I had to take him to the ER they would get notified and then the doctor could see him before December. Well nobody notified cardiology until I asked the nurse when they wanted to see Rhett. She called down to them and they found out that way that he was there. Friday 10-9-09 we got the results of the PFT and found out that they are the exact same from when he was 7 years old! What?!?!?! How can that be he is having his chest expanded to help his lungs grown for 6 years, so for 3 years was it even helping? His lungs have not grown for 3 years! He is permanently on oxygen again and hates it but is living with it. But how could this have been overlooked? So far his heart is not affected but it is only a matter of time if his lungs cannot support him. They also did a sleep study while we were there and found out that his oxygen isn't even helping he is on a by-pap but hates it and most of the times takes it off or doesn't even put it on. Consistent battle of the attitude!!! How do you get the doctors to understand that you know when things are not right? I was so pissed off at the orthopedic doctors for sending us home with out trying to find out what was wrong with my son.

We had a follow up and I laid it on the line and told them all that I knew and they even looked up his PFT and went silent and there was nothing they could say since it was cold hard facts screaming at them on paper. But still they want to do a CT before the next surgery which would be a CT in March and Surgery in April and I am going to demand a CT before the end of June so that way I know for sure if the surgeries are even helping. Why do them if they are not helping him? I would love some feedback at how you would feel and what you would do if you were me. Thanks