Do I or do I not??

Oh my, oh my, oh my...

Why do we have to deal with this? I have been trying really hard to maintain my composure.

Having to handle all this, I just want to break down. WHY???? Why is this happening to him why do I have to sit here and watch my son slowly die? I know that there are lots of parents that have to deal with things like this. To bad that there is no other kids like mine.

So here is the news that we received. When we started the lung volume of Rhett's lungs were very small. The right lung had around 125cc and the left lung around 100cc in the left lung. This was when he was 4 years old. Those lung volumes were around the correct sizes for a 1 year old maybe. So now that we have had some PFTs (pulmonary function tests)since last year. We have had a PFT in October, January and now July. Guess what they are all the same. Hummm... Does that tell you anything? It tells me a lot! It tells me that these surgeries that the doctors have been doing since he was 4 have stopped helping him. Now we have gotten x-rays and CT scans trying to prove to the doctors that I know my son better than they think.

So anyways this last CT scan done in February showed his lung volume at the right side is at 412cc and the left side is at 325cc. Ok then he had a super aggressive surgery done in April trying to get lung volume. What the heck! Doesn't the doctor know you cannot get that much lung volume to make up 3 years in one surgery? :/ So we waited to get another CT after April just to prove to the doctors that I know what I am talking about. As we wait we have a lot of different appointments trying to get a lot of info before we meet with the doctor to discuss the CT scan results. This way we have loaded guns before we walk in and they ask for more tests.

So we get there after worrying for weeks to months. Well at least I was worrying since I knew what was going on and I understood the things that I needed to understand. We get there and to post pone the wait that I have been waiting for they send us down to x-ray since their x-ray machine was dead and they were waiting for someone to come and fix it. After that we went up stairs and wait some more. My nerves were on end! What was talking so long??? We were the first to be seen by him today so why all the waiting? Finally we are meeting the doctor and this is the news that he gave us.

The CT results from August are at right lung 504cc and the left lung 389cc. Oh great we only went up that much that SUCKS! No wonder he is having a hard time breathing. Duh! I could have told you that before all this. Hummm... Do the surgery this next month or not that is the big question that they want us to decide on. He is now 11 years old and he has that small of chest and lung volume is not a good thing. You see if a normal healthy young adult has the lung volume of about 6000 you can see that my 11 year old is WAY BEHIND. I have been trying to reach the doctors office to see where exactly his lung volume falls in the graph.

It is really sad when Rhett turns to me and the doctor and asks both of us "What is going to happen to me?" That just breaks my heart. :( I told him that it is unknown thing at this time. since it really is.

He has to go in for a cardio cath to find out what the pressures are in his lungs. If they are high that is a bad thing if they are low that is a good thing. He will be doing that this next month. They will go in through an artery and up to the heart and check the pressures through that. after that the doctor wants to get together with the cardiologist, pulmonologist, orthopedic and primary care doctors all in one room and get a care plan down for him.

I knew all this was coming but I was not wanting it to come. I have explained to people that have asked... It is like breathing into a plastic bag, how long can you do that before your body just gives up? It is really sad to sit here and know that the doctors have done everything for him but nothing is helping.

I don't know what it is like to lose a child but I know people that are my friends that have. It is hard watching them go through that from the outside. I have met several families that have lost a child to many different diseases sadly for me there have been nothing like Rhett and Dylan. It is hard not to be able to relate to others. Even though there are many people out there that have great support groups for the diseases that they have in their families.

I can admit it I am jealous! It would be nice to know that we are not out here alone. Man it sucks feeling like you are all alone. I am grateful for my friends and family for their support. I am grateful for my Lord for the comfort that he gives me.

I know it took me all afternoon to get this up but I had to stop several times to try to process everything. I am feeling better. I just need to stay in my happy place since I don't have time to be sad and scared. I guess I will deal with that later.