Confounding the Doctors

Jereth is good at confounding the doctors. His issues are never "textbook cases" and sometimes we are left without good answers to why his test results and symptoms are the way they are.

His recovery from the surgery has been steady and he looks good. However there are a couple of things that have his doctors wondering. One is the infections - or lack of infection - and the symptoms. The other is his heart rhythm.

On Monday Jereth had a high fever that spiked, then settled to a more low-grade fever. He also seemed uncomfortable most of the day. The doctors ordered preliminary blood tests that showed a high probability of infection (high C-Reactive Protein and white blood cell count).

To track down the infection he was tested for RSV, had a urine sample taken, and blood drawn from two different veins for a blood culture. The quick test for RSV and other viruses and the urine culture came back negative yesterday. This morning the secondary RSV test came back negative and the blood culture showed no signs of infection.

But the C-Reactive Protein level is still much higher than normal. So the doctor has ordered another blood test that checks another substance in the blood that marks infection. Depending on how that comes back she may have to call in an infectious disease specialist to help figure out what is going on.

For now, Jereth is still on intravenous antibiotics and has another 24 hours of a 72-hour prescription.

Then there is his heart rhythm. He had a short period where his heart rhythm was abnormal on Sunday night, but he looked fine and for the next 24 hours his rhythm looked fine. Then yesterday he started having a series of abnormal readings. First there was just a couple of times where he had a rhythm called supraventricular tachycardia (SVT) for a few seconds, then it would resolve back to normal.

The frequency of the SVT episodes increased and the cardiologist came to visit with me. He said that this type of rhythm is not life-threatening but it is not optimal for the heart. Jereth slept peacefully through most of the SVT episodes.

If Jereth had been having this type of rhythm before his surgery it would be easy to understand them happening now. Or if they had started right after surgery that would be easy to explain. But having SVT's start almost a week after surgery is very unexpected, especially when there has not been anything that would make sense as a triggering event.

For now they have started giving Jereth a beta-blocker. Since he started with this new drug he has had fewer SVT episodes and they have been shorter. There is still no explanation for what caused them but at least they are responding to the drug.

On a completely different note, Jereth got to try taking a bottle for the first time in over 3 months. The swallow study yesterday showed that he should be able to take thick liquids by mouth without too much chance of him aspirating the food into his lungs.

The speech therapist who did the swallow study came to our room later and watched as I let Jereth try the bottle. He seemed interested in taking the bottle, but has not developed the ability to suck on a bottle let alone to coordinate the suck, swallow, breathe pattern. We'll continue to work with him. It looks promising that he will soon start taking some of his food by bottle.