Our email server was down yesterday, hence the combined report for today...
After Elizabeth's chest tube almost fell out the other day, the doctor-in-me decided to become more involved in Elizabeth's care. The hospital doctors and nurses are wonderful and competent, but an extra set of eyes and ears seems only beneficial. So I have begun scrutinizing her labs and X-rays, and this morning started attending "rounds." "Rounds" means the 10 minute block of time where "The Team" (nurses, on-coming attending, out-going attending, residents, fellows and case managers) gets together to discuss the patient's progress and care. The MDs were very open to having me there and allowed me to input and question their plans. As a result of my prodding, I think they are moving faster on some things than they had planned initially.
Yesterday, Elizabeth went to the Interventional Radiology labs where they attempted to place yet another feeding tube past her stomach and into the intestines. For the first time in 12 years (according the head MD), they failed! So they left the tube in her stomach only and decided to try feeding her for the fourth time. And for the fourth time, she started throwing it all up again. The Team was planning to give her another day to see if her stomach starts working better before asking Interventional Radiology to try again. I politely reminded them that we've been trying this approach for almost a week and insisted that they make the Interventional Radiology plans now.
While sitting with her yesterday, Sara noticed that whenever Elizabeth cried both of her legs would become slightly purplish, as if the blood wasn't getting there appropriately. The doctors suspect that large vein feeding into the heart may have clotted off and they are running tests to see if this is true. In the meantime, I convinced them that the IV in her groin needed to come out and be replaced elsewhere. I'm writing this message while they are doing that procedure.
Despite all of this, Elizabeth is hanging in there and continues to look cute. Her weight loss has stabilized. She gets less irritated by diaper changes, the blood pressure cuff and temperature checks. She recovers more quickly from each episode of vomiting. Yesterday, Sara very boldly trimmed Elizabeth's finger nails for the first time. We finally found some onesies that snap down the left side (to allow an exit for her chest tube) and at the bottom (for the heart monitors and IV tubing), so starting today, she may be able to wear clothes!
Sara and I are hanging in there as well, thanks no doubt to your sustaining prayers. It is hard for us to pray sometimes, and we appreciate you taking these requests to God on our behalf.
Thanks a million,