Day 17

Elli had a pretty stable night last night, she seemed to really like the Dopamine and was even awake for about 30 minutes last night around 3 am. We stayed until almost 4, too nervous to leave, but our tiredness got the best of us. When we got here around noon, Elli was up to her old habits, having bouts of fussiness and saturations in the mid 70's. We have yet another new doctor today, Dr. M. She ordered another ECHO of Elli's heart, and basically it shows that her pulmonary hypertension is still very high. The doctors are trying all they can to help Elli be comfortable to decrease the resistance on the blood flow. Because the anatomy of her lungs is so different because of the growing conditions, her lungs are very muscular and sensitive. They essentially "spasm" every time that Elli is touched, in pain, or gets upset. They did change her PRN pain medicine from Morphine to Fentanyl, it is in the same family of drugs as Morphine but works quicker. The down side is that Elli will build up a tolerance to it quicker than she will on the Morphine, but as for now, the doctors are more concerned with keeping her as comfortable and pain free as possible. Our new doc, Dr. M did some brainstorming with some of the other Neonatologists on other teams here at CMH and they decided that they would try one more drug to try and relax the right side of her heart to decrease the pulmonary pressures. It is the equivalent of Viagra and has to be taken orally. So the nurse gave it through her OG (oral-gastric) tube and is leaving it clamped off for an hour. Also they decided to change her chest tube from bulb suction to a water seal chamber to see if she had an air leak because it stopped draining in the night. So far no leak, but very little output, so it might have a clot somewhere, they are unsure. They doctors have left the vent settings alone, thinking that it has more to do with lung/heart compliance and turning up the vent settings to try to oxygenate will only further agitate the already sensitive lung tissue. So of course we wait and hope that the fine tuning med changes will help decrease the pressures. This is so common in babies with CDH and we knew that Elli was likely to face this sort of problem. Basically we give the meds and her time to work things out, after all she is only 2 days post surgery. So of course more ups and downs, just tyring to rid this thing out. Keeping quiet, and our hands off. Brian, Cassi, and Elli