PICU

Thomas is hanging in there. We are still in the Pediatric Intensive Care Unit. He is definitely in some very serious pain and that is so awful to see. All the surgeries are, of course, tough on us, but really this is the toughest part for us. Just having him in pain and unable to get comfortable or eat and sleep, just rips your heart apart. He is on pain meds, but they want to keep dialing them down because we can't leave the ICU if he is on these heavy drugs. The really good pain meds leave him in this state of sedation and we are unable to see if he is improving and can go about his normal tasks of eating, breathing, pooping and sleeping. So as the meds get turned down and he can feel the pain more, the days and nights get harder. There is the obvious pain of the incision site, but also the neck muscles that were cut through are pretty mad and are spasiming at times, plus he is in the immobilizing C collar. Add that up with one 3 month old and you don't get a very happy camper. I always try to find a positive out of all these obstacles we hit and the only one I can think of right now is that I am thankful he is so little. Although he is so little and fragile and it crushes my soul to see him like this, I can't imagine if he were a toddler who could talk and move and understand a little more. When Thomas goes for his surgeries, we walk with the bed to the entrance of the OR hallway and then we have to go to the waiting room and they wheel him off in a different direction. I cry everytime at this junction and I kiss him and wish him luck as well as the medical staff that takes him, but he has no idea what is going in. What about when he is older and cries out at that part? What if he holds onto me and begs me not to leave him...this is not like the first day of school where I can fake it and walk away with a stiff upper lip and a small dose of tough love and then cry in the car, I will absolutely lose it if he loses it. Also, if he were older and in pain and able to tell us of his pain or his hunger or if he had position restrictions that he didn't understand and wouldn't abide by....that all sounds more difficult. So I am thankful that he is so little and won't have to endure the memory of this.  Also I am thankful that this experience has taught me what to expect, so when he is older and we have to do this, we can be prepared with games, toys, visitors, food....whatever it takes. When we were trying to pass the time before surgery as he was NPO for 10 hours (unable to take anything by mouth) I was blaring some music on my phone and dancing around and singing with him - yes we are the weird ones in the PICU, I am pretty sure no one wants the room beside us - I played the songs that remind me of Thomas and his journey and I found myself thinking this could be our tradition. When we are stuck in the hospital, we can have certain songs that we sing and dance to. The more inspirational the better - I am open to any ideas people may have as we often have A LOT of time to pass so the more songs the better. Right now my go to ones are 'Coming Home' by Skylar Grey, 'Wonder' by Natalie Merchant, 'Count on Me' Bruno Mars, 'On Top of the World' Imagine Dragons, 'Seasons of Love' Rent, 'You'll be in my Heart' Phil Collins, 'Ain't no Mountain High Enough' Marvin Gaye, 'I'm Already Home' and 'Rockstar' by Great Big World (Thanks, Dawn!). I also have decided to really learn how to play guitar so I can bring it with us in these times and we can jam, I bet there are studies somewhere on the therapeutic benefits of music. This post really wandered all over the place, I guess that is what happens when you are stuck in a hospital room and your thoughts just jump from one thing to another!