So Rhett had his pre-op today while I mean the 6th so it might have been yesterday. I went running to get him from school. I get there and they go to get him, but I am not sure if they remember that he has oxygen and in a school with no elevator and 3 floors, I have to help him get everything down the stairs and get him to the car. Well after we get to the car it was one of those moments that I was super stressed since I was sore from moving things around at my house the day before and Rhett was very not good attitude. I was frustrated since in my heart I knew that this visit to the doctors was going to be very "bad". Not in they way you may think but bad as my mind was going through everything that I found out not too long ago. The more I thought about it the more nervous I got. We get to the hospital and go up to see Dr. Smith his orthopedic surgeon. We get there and check in with the front desk, and they tell me that my appointment was cancelled. HUH??? What the heck why is that? I never cancelled it. They said that someone called and cancelled it on 12-8-11. Then why the hack when I said that I had a pre-op on that day they said yes?? Man I am confused!! I did call and cancel his surgery that was set up for April but then I set it up on the right day. So I wonder that because I cancelled that one appointment they cancelled both and then forgot to set up another pre-op for us. I asked what the heck am I suppose to do. So the person at the desk that was helping me got Rhett's info and went to talk with Dr. Smith's assistant. She came back and I asked so what am I suppose to do. She said that they would talk to us. So they worked us in and when I saw her she asked how we were doing and I told her that I could do without the drama but I understand. She told me that we were not the only people that had an appointment and it was cancelled and came anyway. LOL! At least I wasn't the only parent there that came to a cancelled appointment. So we are taken to a room and waited. My nerves were a wreck! I was so nervous that I couldn't stop moving. The thoughts running through my head we so bad and depressing.
My thoughts: Rhett's PFT dropped. Why? Not idea. They said that they think the medicine will help him but that is only a maybe. Do a even think that a maybe is a good enough reason to spend between $100-$200 for that every single time he needs a refill? Can I afford the medicine? Well if we get it and then it doesn't help then what? He has taken the medicine better between September and Now then he did before September. If has taken it more better between those times then why did it not help any? He has had so many breathing treatments, and the medicine more then ever before but still his numbers dropped. I just don't understand. If we are doing better but it isn't helping then what can we do to help him? He is going to be on oxygen for the rest of his life and he complains about it often. What is the doctor going to think about this and what is going to be his thoughts on what he thinks will help Rhett? The more I think about this the more I want to cry because in my heart I know it isn't looking good. Do you think he is going to have to break the ribs and pull out the chest cavity more, since all the rings are not holding anything? Can he do that to both side at the same time or can they only do that one side at a time? I am sure they cannot do both sides at the same time. So what side would it be? It better be the side that has something loose in Rhett's body. If I remember right we are still planning to put pins in his left knee since his right knee has them already in there. Oh boy my head is killing me!
When the doctor came in and saw us he asked if we had seen Dr. Uchida (The pulmonologist/lung doctor). I told him that we had seen him, and he said "So what did he tell you"? I said "He said that the lung volume is the same but the function of the lungs has decreased". He told me that is what he had just read, I think he wanted to make sure that I had the same info and he wasn't going to surprise me with anything. He had such a grim look on his face it was not helping my nerves any at all. So he gets his computer out and looks over everything. I did bring up what Dr. Uchida had said about the medicine possibly might help him, but isn't sure. He was quiet for a while and I let him know that Rhett's had more medicine and breathing treatments between September and now then he had before September. He suggested that if we give him the medicine and expand the chest have another PFT to see if has helped. If it still goes down more then they have done everything that they can for him. I asked about getting all the doctors together to have everyone on the same page. He said that was a great idea. I am going to work on getting all of them together. We went over what the doctor wanted to do and we explained it to Rhett to make sure he understood. Then we asked him if he wanted to have the surgery and if he was ok with what the doctor wanted to do. Rhett said he wanted to have the surgery done. So we are planning on having the ribs broken on the right side and than expand the chest on top of having a plate put in his left knee. They won't expand the left side or do anything with the left side until a later time.
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