December 27th: Emmy and I slept through rounds! The cardiologist and the nurse updated me on the plan when we woke up. Emmy's chest x-ray looked worse again this morning. It shows that she still has fluid on the lungs. The cardiologist explained that this could be a combination of the medication she's taking and the fact that she is still on supplemental oxygen. One of the medications she is on, Sildenafil, causes decreased cardiac afterload, which means it decreases the force that the heart has to pump against. This causes some back up of blood and with the oxygen which causes vasodilation in the lungs, it is possible for the fluid to move into the lungs. The cardiologist ordered and ECHO to determine the necessity of the Sildenafil and they will also keep trying to get her off the oxygen.
The cardiology nurse practitioner who assists with discharge planning also came by this morning. She explained that they would prefer Emmy to go home with a NG tube rather than an ND so the nurse will pull the feeding tube back into the stomach and see if Emmy tolerates her feeds. The NP is also working on making all of the necessary arrangements for our discharge home...hopefully within the next couple days! The home health company will be delivering her oxygen, pulse-oximeter, feeding pump, and supplies today. Then I will "nest" for the next day or 2. Nesting refers to a time period when the parent cares for the child independently to demonstrate their competence using the equipment and managing the child's care at home.
Evening update: I don't think Emersyn ever wants to leave the hospital! We were doing so good, then this evening she started having the ectopic atrial tachycardia again, so now she is getting a continuous IV infusion of Amiodarone to help correct the arrhythmia. Hopefully, she will only be on the IV drip for a day or 2 then they'll transition her to an oral version to go home on. Either way, this will delay our discharge a few more days...Emmy's such a little stinker, definitely not a cooperative child so far!
Otherwise our day went according to plan. The Methadone was weaned, and the home health company delivered all of her equipment for home. The feeding tube was pulled back to an NG and Emmy tolerated the feeds running into her stomach without a problem. She is starting to show some signs of oral readiness too- she has been smacking her lips and sucking on her fingers, so over the next couple days I will try oral feeds again with the help of the speech therapist. Overall, we are still taking forward strides, it's just going to take a little longer to get to our goal of going home. I'm keeping my fingers crossed that we will be watching Dick Clark's Rockin New Years Eve from the comfort of our own couch!
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