Apr 26, 2009 Latest post:
May 19, 2013
Carter has Sever Combined Immunodeficiency Syndrome (SCID). He needs a bone marrow transplant to give him a new immune system. I try to keep this thing as updated as I can. Sometimes there is nothing to update on and sometimes I just have a lot of things to try to remember.
So the journey began when Carter was about 3 months old, i guess. He started to have a cough that just never seemed to go away. So then we were trying to figure out what that was. First we thought it was reflux, but found out it was not. Then we thought maybe it was asthma, but no it was not that either.
So then when he was 8 months old his cough got really bad one night and we thought maybe we should take him in to get that checked out. So the next morning his cough was still really bad and I called the advice nurse. She told me to bring him in. So we got an appointment for later that afternoon. The doctor told us he had pneumonia and that he had lost a pound. So he was flying us to Bend, Oregon. Carter and I flew to Bend in the helicopter.
When we got to Bend they told us he had pneumonia and influenza B and that we could go home once he was off the oxygen and gaining weight again. Then they started to do some other tests to make sure there was nothing else wrong with him. They thought maybe he had Cystic Fibrosis. So he had a few sweat tests done to find out. They had one come up positive but then no other ones did. So then they sent some blood work out to be tested. That is when they found out he has SCID. They still were not completely sure that was what he had though. So that was about 4 days into it. They told us they were flying us to Seattle, Washington. I really wanted them to just fly us here to OHSUin Portland, Oregon but if Carter had to go to Seattle I would have been okay with it. So then the next day we got to the plane and were waiting for the blood to get there that someone forgot. When the hospital called and said that OHP was not going to let us go out of state. So then for 2 more days they were telling me that we were either flying to Seattle or OHSU. It changed between the two about 20 times, i think. I was starting to feel like a yo-yo. So then on the 7th day of being there we finally got on the plane and flew here to OHSU. So I at least have my family close to help out some, when they can. Now we know that he does have SCID and that he does need the bone marrow transplant. The only thing we do not know 100% right now is when the transplant will be taking place. From the very beginning our journey has been full of uncertainty and one thing that I have learned from this is that it will work out eventually. When it does there is a reason for the setbacks. Also it does seem to still turn out okay.
It has been an adventure so far and we are still in the beginning of our journey. I am sure that by the time we are through all of it there will be a whole lot more to tell.
Carter got his transplant on the 7th of July. We have had a few more bumps but overall he is doing great. After only about 6 or 9 weeks out of the hospital. Carter ended up back in on Oct. 25th 2009. On Feb. 19th 2010 he cashed in his golden ticket and Heavenly Father took him back home. He lived such a short life but touched so many along his journey. He will forever be remembered, loved and missed.