Mr. Sensitive

Lately Lucas has been Mr. Sensitive. I am not talking about the kind of sensitive that you see on The Bachelor. No, this little man is not one for calm, collected, or roses for that matter. He is a ball of fire and keeps us always on our toes

Recently he has gone through a bit of a growth spurt he is almost at 33 lbs on our scale, which is the magic weight for his Fontan...which is coming way too fast.  Our scale has always been lighter (I personally ignore this fact) than the scale at the doctor's office, so he would even be more like 34-35lbs on their scale. I am not sure if it is the fact that his body is ready for the surgery or what. But, lately if you even look at him wrong he breaks into tears and he is constantly telling me he is tired...and he is getting more and more blue.  Not only is he super emotional (I am talking majorly) he is also VERY tempermental. Now, I understand he is almost 3 and we fully get the tantrums and all of that business. But this seems like more than that, which breaks my heart.

A few times recently we have been playing out front and he can't do exactly what he wants to do. Last week he was playing with the 4 and 6 year old that live across the street. The 4 year old took off running and of course so did Lucas. I try not to be over limit him because the doctor's have always told us he will do that for himself. But he took off running, or should I say sprinting...he got about 30 yards before he stopped in his tracks panting, and literally the 4 year old was almost carrying my blue little boy back to me. She was so sweet, she said "I think he doesn't feel good" and indeed he didn't. He immediately asked me for some water, which has sort of been our code talk for "mommy I need a break." We have talked about that whenever he is out of breath or tired he can just ask for some water. When we came inside to get his water  he was really tearful and agitated, because I know that he really did want to play.

This morning about an hour after he woke up, he had sprinted, in true Lucas fashion, to the bathroom and when he came back he said, "mommy I am tired, I just want to rest on your shoulder and take a nap." Now if you know this little man, that is not like him...AT ALL. During waking hours he rarely sits still. He also has been very irritable, little things are bugging him right now. In my nurse mind I have to think that it is his low oxygen. Those patients who have emphysema/copd are usually always irritable and it makes sense because they are living without adequate oxygen. I just have to wonder if that is the same type of thing that is happening to Lucas.

This is hard. It is hard to watch your child decline. If there is one thing that I have learned in the last three years it is that everyone walks their own journey. Everyone's trials in life are different and unique. None of them are easy! As we are dreading Lucas' upcoming surgery, we are praying it helps him feel better. Praying for a smooth recovery. And praying that one day we can let him play and run outside without worrying about him over exerting himself.