My eyes must have deceived me....

Last night was a rough night for Mr. Thomas. His pain sometimes adds up on him and he has a rough stretch that we have trouble pulling him out of. He is on some oral pain medicine, but when we feel like his pain is really bad he can get some quick medicine through IV. Last night when we thought his pain was pretty bad we tried to give some fentanyl so he could sleep, but he screamed even louder when the medicine came through the IV. The IV looked fine, but something was clearly wrong so we had to prick a new spot to give him a fresh IV because the steroids that he is on for his inflammation need to be given through IV. They have to call a Vascular Access team to place the IV since his little veins are pretty tough to find. So we have to wait for them to get there, which is tough with a screaming baby in the middle of the night whom you can't pick up. It seemed like it was taking forever and he was inconsolable. When they finally did arrive, they tried to place a secondary IV up higher on his arm, so they pricked him there, but it didn't work, as you can imagine he loved that process. They look at his other arm, which is where his arterial line was for surgery, but it is not right, it is turning purple and very swollen. They begin to have a conversation about what they should do. At this point I am beyond my last straw - it is the middle of night and we have now been at the hospital for a week so we are both sleep deprived and just over this whole experience - so to say my patience was done is an understatement. I was physically angry at the nurses for having to wake him up from sleeping to get his blood pressure and listen to his chest (all important things in the ICU that they have always done). I very curtly say to them that they need to just do his foot since he can't feel it and then be done with it! They proceed to prep the top of his left foot, this is another of those moments that the spina bifida is slightly helpful since we can get IV's and blood draws from his feet without hurting him. They are all prepped and ready to prick him, I finally relax knowing it will be over soon and he won't feel it so I don't need to hold him down as tightly. The nurse says - like the always do - "Okay buddy, here it comes" I think to myself "I just told you he can't feel that, why are you acting like he can".....as soon as they push the needle in, he screams....WHAT??!! Nothing else changed. He screamed in pain and pulled his foot back away from them....again...WHAT!!?? That wasn't supposed to happen!! I ask them if they think he felt that and they said it certainly looked like he did. I jump up out of my seat and yell "AWESOME" which probably came across wrong to most people in the room....We have done that prick before and he has never even flinched, but he felt that one! I immediately started to tear up...how is that possible? My mind starts racing - did I just imagine that since I was so upset and tired and needed something right now to lift me up? Could it have been a coincidence...don't get so excited, it's just a little thing. Wait...no, be excited, it's ok to celebrate this. We needed a win, a pick-up for this point in our journey and Thomas (and his wonderful doctors that did the decompression surgery) delivered it! I still can't really believe it and want to test it some more, but I think they discourage parents from poking their kids with needles in the hospital, probably out of the hospital too.

We are waiting for ENT to come and scope him today and look to see how his vocal cords are looking after surgery, after that we need to go get an X-Ray and see how the bones are all looking in his spine. If both of those things go well, we can take off the collar and most likely we will get moved to the Neuro floor and off the ICU floor, which is good since it is a step towards discharge. It will be hard for anything to top that moment of his foot feeling the needle prick today, but will update with news as we get it!