The Neonatologist sat down with all of us this afternoon to explain the latest Cardiology report. She told us that according to the last few EKG's, it appears that Crew has a syndrome called Wolff-Parkinson-White (WPW). This diagnosis explains the SVT and the arrhythmia's that Crew has been experiencing the past few days. WPW is a heart condition in which there is an abnormal (extra) electrical pathway in the heart. Normally electrical signals in the heart go through a certain pathway that helps the heart beat regularly. The wiring of the heart prevents extra beats from occurring and keeps the next beat from happening too soon. People with WPW have an extra pathway that this electrical signal may choose to take causing a very rapid heart rate (SVT). This syndrome is treatable with medication (beta blockers). It is also mostly curable with catheter ablation or burning/freezing the extra pathway. Crew is way too little and young for an ablation, so he will be treated with medications for now. He has been on an Esmolol(beta blocker) drip since a few days of life that is keeping the SVT under control, so no extra treatment is needed at this time. This syndrome was diagnosed by the Cardiologist who is covering the weekend. It wasn't detected on his first few EKG's most likely because of all the medication he was being administered at the time. Terrel and Gretchen want to speak with Crew's main Cardiologist when he gets back into town, to confirm the diagnosis.
So, for now . . . we are in a holding pattern. We are waiting for his stomach to heal. Meanwhile, he has to remain on the ventilator. And, because the chest tubes are still draining they will remain. His lungs have been sensitive to fluid changes and are requiring frequent ventilator changes. He is keeping all the medical staff on their toes. And, we are all developing ulcers from stress and worry. Typically, premies are extubated (taken off the ventilator) and placed on CPaP (continuous positive airway pressure). CPaP is a device that pushes oxygenated air into trachea, but some of that air will inevitably sneak through the esophagus and into the stomach. We don't want any extra air inflating his stomach and putting pressure on his repair site. So, when he comes off the ventilator, his lungs will need to be strong enough to be supported by a nasal cannula or no support at all.
Once his stomach has healed . . . they will test it on Tuesday with fluoroscopy(continuous X-ray) . . . feedings can begin. Feeding Crew will be a very slow process. He will most likely need to be fed with a special formula at first, then gradually transition to breast milk. They will be watching him very carefully to make sure his stomach and intestines are digesting properly.
Crew weighs 4 pounds 11 ounces today, down 40 grams from yesterday. He's still peeing like a champ. And, he also still remains on a Morphine drip for pain.
This is a lot of information for one day . . . sorry. Crew's dad and mom are doing their best to stay strong and positive . . . despite all his set-backs. Your prayers and support are helping all of us get through this stressful time . . . Thank you!!
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| He's still a very critical little boy. |
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