Not sure what's going on

I'm writing an update to the blog tonight even though I don't really feel like talking. Nathan is currently having a setback and we don't know why. Up until this last weekend he had been doing progressively better each day but over the weekend leading up until today he hasn't been doing very well. His heart rate has suddenly dropped into a completely unacceptable range and his oxygen sats also dip when his heart rate gets really low. When he's awake his HR should be 120-130 and asleep it should be 100-110. Today it dropped into the 30's when he was sleeping and was in the 60's when he was awake. He's very lethargic, a rash has broken out over his whole body, and he's a little swollen in the face.

The ICU is jammed packed full of kids in seriously critical condition so they didn't have much time for Nathan today. Jessica practically begged to see a doctor, in fact for the first time in 6 weeks she had a doctor paged into the room. The doctor was so busy he didn't respond to the page for over an hour and then when he got there he was very condescending and completely ignored her concerns. I understand his point of view I suppose. He's never seen Nathan before and he doesn't know Jessica. He's been in a critical kids room and we paged him out of an emergency to talk about a low heart rate. I get why he was irritated, but if he knew Jessica and how rarely she acts like this he would have taken her seriously. Nathan was supposed to get an echo done on his heart today and they ended up postponing the echo because too many other kids needed one first. I just hope and pray that tomorrow is better and that they will start looking into why he's acting like this. We need answers.

I'm trying, like I always do, to logically figure out what the problem might be. I don't think it's his meds. They've been decreasing the meds every day a little at a time and he's been doing great. There have been no big changes in any of his meds over the last few days so I can't point my finger at a med as the problem. It's possible, but unlikely, that it could have something to do with him being dehydrated or malnourished over the last 3 days. He had been gagging and throwing up because of his feeding tube so they ended up taking that out on Friday and trying to bottle feed him. He didn't do well with it and all three days he only took like 25% of the food he was supposed to have. That could explain why he's acting weak and tired but I wouldn't think that would make his HR drop into the 30s! So there are two other options I can think of. Option 1: He has some sort of Viral or Bacterial Infection. Option 2: There's something wrong with his heart that we haven't caught because he hasn't had an echo done in 21 days.

Usually when your heart has a problem you start seeing signs of poor cardiac output which would include a low blood pressure, cold hands and feet, and mottled looking skin. He's showing none of these signs, even when his HR is low. That's encouraging. If it was an infection or sickness of some sort we would expect to see his white blood cell count rising but it's not, it's perfectly fine. Bottom line is that I'm confused, Jessica's confused, the docs didn't listen to her today, and Nathan is all of a sudden not doing well. On top of everything Jessica is out there in Minnesota doing this all alone. I came home because I felt comfortable leaving and up until today I haven't questioned that decision. Tomorrow we should finally get that echo and I pray there's nothing bad on it. Let's just hope this is an infection or something similar so we can get back to recovery.

Aaron