Luke is at it again. When he gets mad he is pulling on his trach and twice yesterday he pulled it out. Someone was right there each time and I got the new trach in with Luke only getting a little blueish. I explained to him afterwards why it is not good for him to pull on his trach. I don't know if he understands but he seems to understand so much else I thought I would give it a try. When he is tired and mad it's like he just doesn't think. I see him many times reach up to pull and then stop or just touch the trach and then pull his hand away fast which makes me think that he does know that he isn't supposed to do it. It is like he just gets too tired and upset and he doesn't have the self control.
On the outside it may not seem like this upsets me. At the time it does me no good to break down and get all sad about it because my boy's life is at stake, I am in survival mode. I try not to dwell on the life and death of it to often because I feel if I do I may go into a depression about it. And then the most upsetting this was the last time he was pulling a bit, just after Hannah was born, my nursing company had the audacity to call me up and insinuate that I was being a bad mom and just letting him pull on his trach and not do anything about it. HELLO! Think about it, who wants to see their kid turn blue and come close to death right before their eyes. No one. The first 3 times his trach came out it was on a nurses shift and not caught as quickly two of the times. When this happened I called my ENT, pulmonlogist and wrote on the trach boards to get ideas. I got a longer trach from the ENT, a "he's just 2 and not much you can do" from pulmonoloy, and some two ideas for ways to put things at night from the trach boards that I implemented. Was there any advice from the nursing company, no. Sorry for the rant, it still makes me mad.
Last night trying to get Hannah to sleep I started thinking more about Luke and his trach coming out and I cried. It don't like to have to watch my boy every second to make sure he doesn't pull his airway out. I don't like that he is so fragile but it is what it is and Luke is an awesome little boy. If I could change it I would but I can't so I don't dwell often but pray that it will never come out when we are not taking it out for a change again.
And a cute picture of Luke who makes it all worth it.