Only thinking of the positive

Jaxson is super junky and coughing like crazy. It doesn't seem like he's sick, unfortunately, with a trach, I can't identify the cough. It all sounds the same through a trach, I can't say its croupy, or junky. Its the coughing, nonstop coughing, which he does from time to time, because his trachea collapses even around his trach, causing him to cough uncontrollably. We tried custom making him longer trachs, then we tried moving his trach up a size, to try and push his airway open. The last try was to give him lidocaine in a neb, numbing his airway, and stopping the coughing. I never got that prescription because the coughing never got that bad for more than a day. Now it has been 3 days, and I can't get anyone to give me this prescription. Our trach/vent RT is the one that mentioned it, she is out until June 6. ENT won't write the prescription without talking to her first. Grrrrrr!!

So as I sat down to post today, nothing came to mind. Nothing good, that is. I didn't have anything to post about our weekend. Daddy wasn't here, and it was freezing and pouring all weekend. We sat at home and watched the rain. Still fighting with the IRS for our money. Real estate agent informed me that house's were selling even lower than I thought! I'm tired of posting negative, whiny posts, which seem to be our days right now. I think everyone agree's, seeing my lack of friends lately! I wouldn't want to be around me either!

But then, this afternoon, both little's were asleep at the same time. Unheard of! I was going through some stuff, trying to box up and de-clutter, and I came across a huge binder that had some of Jaxsons medical records from a long PICU stay. I sat down and starting reading. This was our longest PICU stay, 4 months, and definitely the scariest! As I'm reading PICU attending notes, cardiology notes, and nurses notes, I started to realize something.

I don't have any reason to be negative about life....I have my little boy. He is here, he is home, and he is a miracle!
During that one stay, he had 4 major surgeries (heart cath, 2 closed heart surgeries, one open heart surgery), over 150 chest x-rays, over 200 procedures, and almost 50 CT's and MRI's. Its eye opening when you can physically read what the intensivists are writing about your baby. A small piece, "This is a 6 month old, extremely critically ill baby boy with Trisomy 21. He continues have congestive heart failure and respiratory failure. I feel he will need yet another transfusion of packed red blood cells, and will need to remain mechanically ventilated for an unknown amount of time."
Wow!
Jax is my hero, he is amazing, and he is mine!

So from now on, no matter how long our downward trend in luck continues, I'm going to say one positive thing every day, and I'm changing my negative attitude now!!
Today, I just think of my miracle baby, and how lucky I am that I can still hold him, and smell him (oh he has the best smell!) and kiss all over him!!!