Not feeling well

Tonight I lay my head down for bed and inside I am a paranoid, freaked out mommy. Logan started getting sick this afternoon. The secretions from his trach are yellow and thick. He is lethargic. This evening he had the start of a fever. When he begins to get sick like this we hit him hard with meds. This includes a nebulized (inhaled) antibiotic, steroids, and bronchodilators to open up his airways.

When he gets sick, I worry about all the things that could happen. I know what it was like for Logan to be sick previous to the trach. I was good at knowing sick vs. not so sick. The trach now adds a few more variables. By having a trach and being a child with a weak cough, Logan is at risk for mucous plugs. It is just as it sounds, a plug of mucous in his airway. This can be life threatening if not dealt with quickly.

Most likely this is a trach related infection that is generally isolated to that area. My biggest worry is that he could then develop a pneumonia. A small trach infection can lead into a cascade of events. Fever and lethargy mean weakness, which means less movement of secretions up and out of the airway. This turns into pooling of secretions in the lungs which can turn into infection.

We all know where pneumonia takes Logan...and I don't even want to mention that place. I debated packing a bag tonight but did not, knowing he is in the hands of an amazing nurse. Our night nurse will stay on top of things and do everything she can to keep Logan moving in the right direction. We are so lucky to have nursing services for Logan and I often feel guilty.

I read blogs and Facebook pages of many special needs families and realize that not all situations are equal. There are kids out there that require more care than Logan who have little to no nursing services. Many insurance plans do not cover private duty nursing. Ours only covered three months of nursing care for the year. Someone please explain to me how a family can be expected to pay the rest out of pocket. Instead, families go without and in turn they suffer. It isn't hard raising a special needs child if that is all a parent does but we know it takes much more to keep a family unit functioning.

Now I am fired up. This topic always gets me going and I could probably write for days. I hate to get opinionated or political as this is not my strong suit. Most likely because I feel out of my comfort zone making generalizations for others without solid data to back it up. But trust me, the data could be found and I could make a pretty good argument!

Now back to the topic...this guilty, paranoid, worried, freaked out mom (who is now fired up) is going to attempt a good night sleep. Logan is in good hands. These situations always have my gut instinct questioning itself. What is a girl to do when her own north star is out of whack? I have learned that these are the times when Logan shows me the way. He is sailing the ship and will tell us what he needs, we just have to watch for his cues. Please send some warm hugs Logan's way as he could use a boost to sail through.