Thursday, April 14, 2011


I hate plugs. Not the electric kind, I'm talking about the mucous kind. The kind of plugs that land kids like Dylan in the hospital for weeks fighting for their lives. The kind of plugs that take our kids from us way too soon. Dylan has had some major mucous plugs since he was diagnosed with SMA. There have been a few flatlines with one happening in our home and Ron basically saving his life.

I remember a time when Dylan was about 2 months old (pre-SMA diagnosis) and I decided to cut his finger nails. I ended up cutting a little too close on one and his finger bled. He cried and cried. I called the pediatrician completely FREAKED out. He told me he would be ok and to calm down. He then said to me...Let's hope this is the worst thing you ever have to go through with Dylan. The following months of what we went through with Dylan after his SMA diagnosis really made this whole situation of his finger bleeding seem totally ridiculous to me. Especially after witnessing his first mucous plug.

How do you basically bring your child back when their numbers are telling you they are gone? How do you kick into gear and remember to do all the right things? How do you mentally recover from basically seeing your child lifeless and colorless in front of you? I don't really quite know how to answer that. You just do it. I always try not to allow my emotions get the best of me. I try to focus on getting Dylan back to where he needs to be and not listen to the crazy beeping of the vent and pulse ox. Before Dylan was trached we had some very scary times both at home and in the hospital. Times that we nearly lost him. Times I don't care to remember but are etched in my nightmares. The trach has made the mucous plugs a bit easier to deal with. But unfortunately with SMA there is always some sort of unchartered territory.

I had put Heather to bed and Ron was reading Dylan a comic book. All of a sudden Ron was yelling for me that Dylan could not breathe. We tried to ambu him but it was not working. Cough Assist did nothing. Dylan looked at me and told me he was ok but his oxygen was dropping and his heartrate was through the roof. Ron called 911. I told our nurse to get another trach out. Dylan kept saying he was ok. I told him I was going to take the trach out. When I took his trach out I could see it was completely clogged up. I have heard of this happening but it has never happened to us. I put another trach in and then Dylan told me he was better. Mom...he said calmly...I'm really ok now. Oxygen levels started to go up and heartrate started to go back to normal. Next the paramedics, the fire department and the police department were all in my house charging up my stairs. All of this happened in about 80 seconds. 80 seconds of pure terror. That is what this disease does. It is like playing beat the clock with someone's life. Then Dylan looked at me and said Wow Mom I think all of Rockville Centre is in my room. Just about.

When something like this happens to you and it doesn't really matter how old your child with SMA is, it still rocks you to your core. There is a complete aftershock that occurs. What if I was not there. What if I didn't hear the pulse ox alarm. What if changing the trach didn't work. What if...What if...What if. It makes going to dinner with your spouse alone up the block a scary thought. Seriously, it makes sitting in the living room a scary thought. As "normal" as we try to make our life with SMA there is always something that happens every once in a while that snaps us into the reality of how brutal this disease can be.

I don't think Ron or I slept that night. We decided to keep Dylan home from school the next day as a precaution. I think the fact that he nearly stopped breathing entitled him to a day off. Dylan woke up fine and we joked about how my Dad and Heather basically slept through the whole incident. Dylan thought it was funny that the Firemen got to see me in my robe and he also remarked on how the EMT was gorgeous (she was very pretty). Then we went about our "normal" day as if nothing ever happened. Too bad my mind can't move on that easily.

Prayers to all the sick SMA kids/adults out there.