Update on Drew

It has been a loooong weekend. Drew is doing a bit better today, he still isn't quite himself. He still has liquid diarrhea and is having his dusky episodes frequently. Much more frequently then before. I just talked to his regular pedi, and we are scheduling a follow up EKG sometime soon. Here is the scoop on our little dude:

Round 1:Drew started vomiting on Thursday (projectile-freak show vomiting), Friday it got much worse. By Friday evening he wasn't keeping the pedilyte down, so we brought him to urgent care. The MD at urgent care gave us a referral to go to Childrens Hospital to get him on an IV for hydration. Well, 7 attempts at trying to start an IV, the line was in. We got home around 2 am Saturday morning. They also straight cathed him to make sure he didn't have a UTI and they did a chest x-ray to ensure he didn't have pneumonia. Both of which were negative.

Round 2: Saturday, I got him up from his mid-afternoon nap and I noticed his hands and feet were a bit dusky, the duskiness quickly appeared mottled in all his extremities. His nose and lips were a bit blue as well. I called the nurses line, she said "well, sounds like a circulatory problem, call your pedi on monday". WHAT? So as he is getting more and more mottled. I called again. The next nurse recommended we head back to Childrens (he did not appear to be in distress at this time-he was cooing and sucking his blue toes). Follow your gut mom.
We get to the ER, they took vitals, and of course, he started to pink up when we got there. He did have petechiae on his chest, which I did not notice at home. Petechiae is broken capillaries under the skin, it looks like pin pricks. It can mean different things, but is serious, as it could indicate a serious problem. Well, 22, yes TWENTY-TWO attempts later at trying to get an IV started they gave up. It was probably the worse thing I have ever seen. He screamed, and screamed, cried, shook, wailed. It was absolutely heartwreaching. Enough was enough. We asked them to stop. So, because he couldn't get an IV in, he had to have a shot of antiobotic (the petechiae can be caused bacterial infection and I think they wanted to cover their bases). While we were in the ER, they did a CT scan of his brain to rule out a brain tumor and many blood draws. After we were admitted, they hooked him up to the telemetry and the oximeter. He also had a echo done and a EKG. The actually also checked his blood gas levels to see if he had nitrate poisoning from our water. Everything came back ok, with the exception of the echo- he has increased flow from his aorta, but not clinically significant to cause his blue episodes. He also has an extended QRT wave.
At one point they told us he had a atrial arthemia. I freaked. Then 2 hours later, then came in a deeply appolgized, they were wrong, it was an artifact on the EKG. WHEW.
So, here we are, still sick with a icky virus and turning blue. We are doing a follow up EKG to find if there are more issues. But otherwise, his heart looks healthy. His regular pedi thinks it is an autoimmune response and his body just clamps up trying to regulate his temperature. It kinda reminds me of Raynauds. They just generically diagnosed him with vasospasms.
I think Drew has been investigated more then many of us have...we definately know how his engine runs.
Ok, here is the "good" out of all of this: the hospital gave us the BESTEST cream ever for his excema. I found it online, I plan on buying mass quantities and giving it to every person I know that suffers from excema! (ok, just kidding). Too bad Aric didn't have his camera, I actually slept in Drews hospital crib! My family was making bets if I really would or not-it actually was roomy (sorta), I kept the back rail down so I could escape if needed:) I just couldn't leave poor little Drews side, especially after being a human pin cushion.
I am tired, Drew's tired and so is Aric. I have no clue how parents of chronically ill kids handle this everyday for months and years. It is mentally, physically and emotionally draining.