Settling In

No pictures to post today. We're all getting settled in to the change of scenery again. Kristin got a Ronald McDonald House room again, and I have decided to return back to school and work. We returned to Springfield today and Kristin will be going back to St. Louis with her cousin Katie tomorrow. Elise is doing very well with her oxygenation, but is having her regular difficulty with feedings. They began her feedings to work towards the calories she was previously at. They have been giving her plain breast milk at volumes up to 90ml over an hour every three hours. When they reached that volume she began vomiting. This is of particular concern when intubated because the tube creates an open passageway into the lungs and prevents Elise from protecting her airway by closing epiglottis. They backed her feedings down to over two hours, so she is getting 70ml over two hours and will be working back up to 90ml with the plan of fortifying in the near future. This is far from meeting her caloric needs, and she will likely continue losing or just maintaining her weight. She was 9lb, 15oz (4.5kg) when we left Springfield, but with the change of scales and the addition of edema fluid, it will take a couple of days to see exactly where her weight is now. Her chest x-ray showed signs of pulmonary edema and she was given a single dose of Lasix that she responded to well. This prompted them to add back her Aldactazide (hydrochlorothiazide/spironolactone). With no positive cultures, fevers, or elevated white counts, they have discontinued her vancomycin, gentamicin, and cefepime. Elise was evaluated by cardiology and shown to have evidence of recurrent pulmonary hypertension. Her right ventricle, the area of the heart that directly pumps blood to the heart, showed dilation. However, there was no backflow of blood through the tricuspid valve into the right atrium. This is how the degree of pulmonary hypertension is objectively measured, showing us that her pulmonary hypertension is not severe. Since she previously responded to inhaled nitric oxide, they placed her on sildenafil, better known as Viagra (yeah, not just a boner pill). The two work on the same pathway nitric increasing cGMP, and sildenafil preventing its breakdown. The net effect is vasodilation. This is not a reference to "opening up her airway." The medication is to dilated the vessels that move blood through the lungs, dumping carbon dioxide and picking up oxygen. The story I was told in medical school is that Viagra was originally studied for its effect on pulmonary hypertension, but the mental picture I got was horny old men wrestling young nurses for their new pills. Anyways, Elise is doing pretty well from a respiratory standpoint. All viral studies have come back negative, and their is no sign of bacterial infection. She is oxygenating much better and seems to have more reserve. They are moving slowly on her vent settings with the hope of extubating by the weekend. The difficulty as I see it now is getting some calories down her. While she is still intubated we have to take extra care in slowing down the vomiting. She is still regurgitating several times a day, more with maneuvering of her tube and agitation of her gag reflex. I did get to hold Elise for about an hour today, and she got moved back into a regular crib. Kristin will be taking over my job with the postings now, and will be busy with everything in St. Louis. Love you all, Jason