Morgan - 2011 in review

It's been a little while since we have updated Morgan's blog, so I figured I would just give you a whole year in review. And what a year it has been! As of January, we had been very lucky as far as Morgan's health goes. He was almost 2 years old and hadn't been hospitalized once during those 2 years, with the exception of the 5 days he spent in the NICU when he was born. His doctors told us to expect him to be in the hospital his first winter, but we managed to keep him out with really no problems. So when December 2010/January 2011 rolled around, we knew what we needed to do. His first winter we kept him very isolated. He rarely left the house, unless is was absolutely necessary. We knew hospitalizations were inevitable, but we were going to do anything within our power to keep him out. So, in January when he started coughing really bad and was showing signs of getting sick, we knew our luck had run out. It's usually difficult to tell when he gets sick, since even then his attitude never changes. He is always so happy, running around and playing. The doctors and nurses at Children's Hospital even ask how we know that he's sick. But as parents, you just know your child well enough to know. So when he went into the hospital in January, we still thought that once every 2 years in the hospital was do-able. Then came stays in February, March, May, August, twice in October, and again in November. The second time in October and the one in November probably could have been avoided. Both times in October he was sent home early, after 4 or 5 days, when we knew he was still sick. But the hospital said he wasn't sick, and sent him home. We knew better, that we would be back. And we were. His average stay is 10 days-2 weeks, so in all he was in the hospital 8 times for around 3 months total in 2011. Morgan, along with anyone with CF, can pick up lung infections very easily. He has daily vest treatments, medications, and inhalers, yet he contracts MRSA and pseudomonas no matter how hard we try. Something like an infection, or even the common cold which is no big deal to most of us, can be fatal for him if not treated. When he is in the hospital, they "up" his treatments to 4 times a day, and gets a very heavy arsenal of antibiotics round the clock. He always gets a PICC line put in. It's so much easier than having to keep putting in IV's all the time. His little arms are so scarred up already. They said if this is going to be his life, with so many hospital stays, a port will be put in and stay in so they can just hook up to that every time he's there. It would make things so much easier, but we aren't exactly thrilled at the idea of him having the surgery to have it put in. Whatever is best for him, is what we'll do.

This year we spent my(Dave) birthday, Mother's Day, and Thanksgiving in the hospital. We were very close to being there for Christmas. At the time I'm writing this, Morgan is getting sick again and they are starting him on new meds. So, there's still time to be there for New Year's! Not that any of that matters. If he is sick, the hospital is where we need to be. Children's Hospital is incredible. They have been so good to us, and they really love Morgan. We have gotten to know most of the nurses, doctors, and RT's by name. We have become a family.

Our newest chapter began just a few weeks ago. Morgan has just been diagnosed with autism, to go with everything else. Even though we saw the signs, and had doctors tell us they pretty much knew he had it, it was still something we didn't want to believe. This is all still new to us. He has appointments in February to start the ball rolling, so we'll see how that goes. 

So, his life was fairly trouble free for the first 2 years. This past year, on the other hand, was very difficult. But, he takes everything in stride. His attitude never changes. Always cheerful, always smiling. He takes whatever they dish out. He has had to endure more this year than most adults have in their entire lifetime. Of course, he doesn't understand that this will be his life, and he will have to go through this forever. Unless there is a cure, which as of today, there is none. In a way, we dread the day that we have to explain this all to him. Explain why he has to take all these meds, do all these treatments, and can't live his life the same way other kids live theirs. But we'll worry about that when that day comes. As long as he keeps fighting, we'll keep fighting for him. And he IS a fighter! For now, we will just take things the same way we always take them. One day at a time...