January 27th - Primary Children's

 Drew enjoying coloring.

Yet another EKG. He's a pro at getting these done now.

After doing gym at school Drew's heart starting hurting again. By the time they called me and I got there it had been a while but his heart rate was still up and his O2 sats were still low. I took him home and called his cardiologist. By the time they called back he was leveling out and starting to feel better. They said to bring him on down to Primary Children's anyway so they could do more testing that we don't have available up here. (On the way there Drew said it would be nice if they could figure out what was wrong so he could race his friend Denaeyer and see who really is the fastest. That's all he wants, to be normal.) Long story short they did none of the testing they said they were going to do. They did the EKG and X-rays, both of which we can do here! Amazing. While there he saw at least eight different doctors, almost all were cardiologists. Their game plan was to get him a heart monitor to wear for a month to see if we can catch it when it happens. (Sometimes it takes eight months for it to happen again. Sometimes only one or two.) I finally agreed to it. It's winter and since he said his heart has never hurt so bad it was time. They had to ship it as they don't just keep those things on hand. They also said that they thought he might have RAD - Reactive Airway Disease. He literally coughed the entire time we were there, it hadn't ever been that bad. They wanted us to schedule him to see a pulmonologist at Primary Children's at a later time. 

Once I got home I looked up RAD and it's a glorified way of saying asthma. I took him to a doctor who works with his primary care doctor as he was busy the next day. He did some breathing tests and sent us home with a couple of inhalers and a steroid. The inhaler cut down on his coughing, but didn't stop it. 

On Thursday, when the monitor was supposed to be here it wasn't. I called and they said it would be here the next day. Repeat the same thing the next day. On Monday I received a call saying that they needed a baseline on Drew. I asked why and found out that the monitor they were sending only recorded when he pushed a button and he could only push it five times in one month. When the monitor arrived on Tuesday I sent it back. I called and told the cardiologist I thought it was the most ridiculous thing I'd ever heard of. They could hook him up for an entire month but only if it recorded all the time. I still haven't heard back!

That same day Drew had another episode. He woke up early and was feeling really bad and as though his heart was racing again. He puked, which normally will reset everything but it didn't. He didn't wake us up to tell us what was happening so by the time we woke up he was almost over it. He puked right after we woke up and it still didn't reset. I called to get him in. They had an appointment an hour later but by that time he'd puked a third time and it was over. That was the most puking he's ever had to do to reset it and it's the first time it's started while he's been sleeping. The Dr we saw that day was another Dr that works with our Dr, who was busy again. She said she thought he might have acid reflux and to start him on some medicine. We did do the medicine but Drew said he didn't notice a difference. 

February 11th I had an appointment to get him into his primary care Dr because he's really good. He came in and within five minutes said: "He has walking pneumonia." Hence the reason he'd been coughing so much this winter. He had walking pneumonia for 2-3 months! Apparently when his lungs are sick he doesn't feel good - go figure! Two days into the medicine and he was so much better. 

We're still doing the inhaler and it seems to give him the ability to keep up with the kids his age better. We go back for a follow-up soon.