Day 45 - July 30 - Happy for pain!

Connor has slept through the night without issue, a true blessing as he started the evening distressed, exhausted, and with the problems of a new bed looming before him. When they took him off the roto-bed the first time, he was nauseous for days as he tried to re-acclimatize to an unmoving surface, sort of like sailors stagger a bit when they return to the land after months at sea - their minds have adapted to the ever-moving surface of the ocean, so when they get back on dry land they have difficulty walking on a surface that doesn't move. Connor is experiencing something like this, and so while it's desirable to be back on the regular bed, it presents it's own set of challenges.

Additionally, now begins the hard work of therapy for Connor's voice valve, and (hopefully soon) they will begin therapy to make sure he can swallow on his own. Our nurse calls this the "tough love" stage, where we are going to encourage/force Connor to do things he may not want to do in order to gain a greater benefit. Hmmm, that sounds a bit familiar...

OK, I typed that this morning, and had a completely different post to go with from here. But I have to tell you about what happened this afternoon...

First, we set the mood...

Connor hasn't had any pain medication since 0500 this morning. This afternoon, the RT was doing some cough therapy with Connor, which involved shoving forcefully on his chest. Shortly thereafter, our nurse had to change his IV out; so she took out the old one, then started a new one - only she couldn't get it started. While she was working on it, Connor began to complain of pain in his chest! First Cherié, and then our nurse started poking and prodding, and Connor kept telling them it hurt "right there", a spot on his lower left ribcage. Finally, our nurse told Connor to close his eyes, and open them when she pushed the spot where it hurt. Connor pinpointed the identical spot four times out of four - with his eyes closed!

But wait, there's more...

The RT came in and put in Connor's speaking valve, which is a lot of effort for the boy. Still, it was good to hear his voice again - but then he began to get distressed - the nurses were still trying to get his IV in, and the RT was working with the respirator, when Connor began to contort his face and say that the air was stinging his chest and hurting him - badly, to judge from the look on his face. Our nurse couldn't get him any pain medication without an IV, so he went quite a while without any meds - and the longer he went, the more he hurt. He began complaining that his legs were hurting, like they were being stabbed, and that other parts of his body were doing the same thing. Our nurse asked him if it was like the feeling you get when you come in from the cold and your fingers hurt, and Connor said it was like that, or like when your foot is asleep and starts burning and stinging as the feeling returns!

Finally, our nurse was able to get the IV in place and give him a dose of medication, and almost immediately the pain went away. It was a bit strange, celebrating the fact that our son was in pain, but the fact that two nurses, an RT and a doctor were busily documenting all of this after we left the room is worth a celebration or two. Praise be to God for this step!

Cherié and I prayed this morning for encouraging signs today. Thanks, Lord. Pain is feeling, and is more than Connor has had for 45 days. We earnestly believe that this is the foretaste of greater things to come.

God is good - all the time.