Today was not a great day. Rambo has yet another infection that they believe is staph of some sort. They are still waiting for the cultures to grow and specify kind then species, then blah blah blah. Anyway, he's on a gammit of antibiotics again with an IV in the OTHER side of his head - bye bye more hair. They believe the infection came from his PICC line (it's a more permanent IV). That's 2 for 2. The last time he had a PICC in he got a blood infection. Here's the real kicker - they need to put ANOTHER one in to give him fluids and medicines because a regular IV can't handle all of it. Vicious cycle?? I think so.
I got to see him struggle and be in pain for the majority of the day today. Lucky me. He got moved back to the warming bed because he was actually cold. His temp went from very very high to very low (See, I told you this would happen. It's not quite anthrax, but it's the same point.) He was in a crib for a whole 3 days. The problem with the warming bed is that it makes him too hot so he sweats and that cools him down too much. It's a fine line to walk with this boy. He was purple and white mottled, his eyes were red and swollen, his eyelashes were stuck to his eyes, both hands and all fingernails were purple, etc. They had to stop feeding him because he's not digesting anything and he's back full time on the vent.
I'm starting to think that he must think the goal is somewhere behind us.
Once his temperature was more stable he did definitely start to pink up and seemed much more comfortable. I keep saying I know he's a boy but pink is a much nicer color on him than blue. He even threw a few smiles out at me before I had to leave this evening. And, in brighter news, I changed his trach for the first time today. It was definitely a daunting task to think about and have placed before me, but now that it's over it's not such a big deal. But not so much not a big deal that I want to do it on my own anytime soon. I'm actually considering bringing an RT home with me just in case something goes wrong they can fix it. I wonder what the going rate for one is - maybe insurance will cover it....
BUT all this is just a side note to what I really wanted to say. One of my biggest pet peeves, and I could be wrong, but I'm not. I will preface this by saying that no one has actually said this to me throughout this trial (so good job friends and family), but I have seen and heard it far too often lately. Thus begins my diatribe:
"God will never give you more than you can bear." I'm sure we've all heard some form of that at least once in our lives. Okay, people, you might want to sit down now because that's NOT TRUE. There's a whole lot of wrong going on in that statement. Firstly, because the Bible never says that. Secondly, because what that statement implies is that we don't have a need for God so it's kind of a moot point to offer that up. In fact, the Bible says the exact opposite in several places. And really all that statement does is make you feel more depressed and guilty and overwhelmed and shameful that you are already feeling depressed and guilty and overwhelmed and shameful. So the next time you feel the need to say something factually incorrect and completely disheartening then this is for you. But if you actually want to be encouraging then just shut up. Shut up and give a hug.