Seriously!? We can't have just one day? I always get a little leery when things seem to fall into place too easily. Call me a pessimist, but I always assume that something will happen to debunk just about anything that I get too excited for. Now I'm not saying that I was excited for Miles' echo, but I was looking forward to the possibility of answers. And the sooner the better. Getting in same week is not something that is easy to do, and I even got a time that Ben could join us without taking time off work, almost unheard of. Of course it was because it's not going to happen now.
I had a feeling when Miles was acting so staid during his cardiology appointment yesterday that something was up. I chalked it up to the early hour (we had to be there at 8:15am), and put it in the back of my mind. When we returned home at about 1:00 yesterday afternoon, Miles went straight to bed. While he slept, his breathing quicken, he became very hot and his heart was beating rapidly, which doesn't necessarily mean anything for Miles, but I could tell he was sick. Every hour or so I'd take his temperature. It generally read between 100 and 102 but did get up to 104 in the middle of the night, so I took him into his doctor late this morning. Miles seemed much better, but I wanted to do everything possible to make sure that we kept our appointment on Thursday.
At first, Dr. Ditty thought that it was nothing serious. He'd seen a ton of flu, so he did a swab (it was negative). He started listening to his lungs and immediately said, "His lungs are sounding great." He spoke a little too soon though because when he changed the position of his stethoscope his face kind of changed, and he said, "Uh oh, I'm hearing rattling in his upper right (weird, it's usually the left) lung. I think he's got pneumonia." So, we headed over to radiology and got a quick x-ray. When we returned, Dr. Ditty was actually gone to his own doctor's appointment, so Dr. Haroutunian (the chief of medicine at the hospital out here--not saying much-- and Miles' actual pediatrician--don't love him though) took a quick look at Miles and the x-ray results. According to him, he didn't think that there was any indication of pneumonia, but he was concerned with how high Miles temperature had gotten. He decided to run a strep test, despite there being no really strong indications, but it was a good thing because it came back positive.
I was concerned about this because since Miles is a little kid that like to squirm around, he has to be completely put under for echocardiograms. There are certain medications that have to be avoided when being sedated and in general, you can't be sick. I talked to Dr. H about this, and he said that there shouldn't be any issue with the antibiotics, and that in his opinion, unless his symptoms weren't improving, he'd be just fine to keep the echo appointment for Thursday. I had talked to sedation this morning, and I told them that I would call after his appointment to let them know if we needed to reschedule. I explained that Miles was being treated for strep, but he'd have been on antibiotics for more than 48 hours by the appointment. They told me that as long as he was breathing okay and wasn't too congested, he should be okay to continue with the echo. There would, of course, always be the possibility that after the doctor administering the sedative examined him, that he could be sent home. I was willing to take that risk.
So, I gave Miles his amoxycilin, fed him some lunch (since he's eaten almost nothing in the past 24 hours and has lost 2 lbs. in the past week) and he went back to bed. Unfortunately, just as Ben was leaving for work I got a call. "Hey, Stephanie, it's Bryan..." Who? What Bryan do I know with a 435 number? Ah, crap! It's Dr. Ditty. "Hey, I just spoke with radiology, and they did read the x-rays as pneumonia. I talked to Dr. H, and he hadn't heard the rattling when he listened to miles, but Ii definitely did, and radiologist read pneumonitis and pneumonia in the upper right lung where I heard it. The antibiotic that he prescribed for the strep should take care of it. I'm sorry, but you really need to call Primary's and reschedule that echo." And this is why I don't trust good easy things...
I called sedation back and spoke with the same woman that I had originally spoken with early this morning. She was very nice and sympathetic, but she did assure me that I would definitely have to reschedule. Not only that. Protocol dictates that I have to wait 4 weeks following the disappearance of symptoms. A month. We have to wait another month. I can't be thinking about this for a month. Sedation transferred me to cardiology to set the new appointment, and we scheduled it for April 8th. I asked the receptionist to please leave a note for Dr. Puchalski about the situation because I was under the impression that this was something that he wanted done soon.
When Miles went to the hospital unexpectedly for breathing difficulties prior to his surgery, we ran into the same problem. They wanted us to wait at least 6 weeks before they would do the surgery following his discharge. The problem was his surgery was scheduled for 3 days later. I was super upset about the idea of waiting another month and a half, especially because Dr. Puchalsi had said at the initial diagnosis, "Your son has pretty serious heart disease and is going to require heart surgery within a couple of weeks." We had already waited a couple of weeks. I didn't know if we even could wait another 6. I called cardiology and explained the dilemma. Dr. Puchalski wasn't in, but i was so impressed that another cadiologist called me back, himself within about a half hour. He sat on the phone with me for a good 15 minutes. He told me that he had reviewed Miles' charts, as well as all of the notes from his hospital stay. He told me that he could find no reason to delay the surgery 6 weeks, that he had already spoken to anesthesiology, and we'd be able to go ahead with the surgery in a week and a half. That is why I love Primary Children's. Miles wasn't even his patient, but this doctor took the time to thoroughly review his case, call me and spend considerable time talking to me then pull strings to accommodate us.
I'm hoping that if Dr. Puchalski knows about what is going on, maybe he'll so something similar. I don't know though. Maybe the immediacy of this echo isn't nearly as important as I feel like it is. Maybe 4 weeks is just fine. What I really wish would happen is that Dr. Puchalski would see that Miles has pneumonia and have us come in right now, so he could examine him, himself. If Miles really does have mitral valve stenosis, I think that he is frequently misdiagnosed with pneumonia (or it's the cause) because fluid is seen in the lungs, when it's actually blood that is leaking in. I guess the problem this time is that it's in the wrong lung. Anyway, I have more than doubts that that will ever happen. I think, more likely, we will wait 4 weeks, and have the echo.....assuming that he is not sick again in 4 weeks. And that's a pretty big assumption.
This is all so frustrating and discouraging. i just want one day of healthiness and maybe a few answers. I'm so tired. Plus, what is wrong with my family? I'm just going to assume, now, that anytime anyone is sick, among whatever other ailment, they have strep. The other week Coney had strep and influenza. Right now miles has strep and pneumonia. When I was little I had strep and the chicken pox, then when I was a little older, I had strep and pneumonia (which made me miss the auditions for my school play which ruined the rest of the year). Can't we just all have something removed or something, so we don't keep getting strep? Maybe we could have antibiotics added to our drinking water? I don't know, but this is getting ridiculous, and I just know that I'm going to wake up with a sore throat tomorrow.
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