What a weekend we've had so far and we're only to Saturday night. I've got so much I want to write, that I've got to detail each thing separately or I will end up rambling.
Elaina had her unsedated echo on Friday. From a cardiac standpoint her heart looks okay. One of the atrial chambers is shunting a little more than before and she has a valve that is a little more leaky than on her last complete echo. They are planning on starting a blood pressure medication to control this. We are waiting for lab results to verify her electrolites before starting this new medication. Her cardiologist is comfortable at this point to schedule her sedated echo and her cardiac catheritization in 6 weeks, with surgery for a Bi-Directional Glenn to follow 2 weeks later. So, we're looking at the beginning of August. Better than had been anticipated up until now.
Like a lot of other "heart babies", Elaina is a hard stick when it comes time to draw blood. In fact, none of the phlebotomists will even touch her at this point. The IV team is extremely reluctant, but will give it a half-hearted try, they usually give up after 1 or 2 tries. Last night, the Hospitalist came and tried to do an arterial blood draw, but was only able to get 1 small vial after 2 pokes. SO, this morning the doctors talked to me about getting a picc line. I debated, but finally agreed. We need to know what is causing her illness to be able to treat it properly, and lab work is one essential way to do this. Up until this morning 90% of her blood samples have clotted before they even get to the lab. The other 10% have either been negative or have been considered contaminated. In fact, one of the cultures from yesterday grew out as "Gram + cocci in clusters". The fact that it is in clusters makes them think that the sample was contaminated by something on her skin. So, they took her down to Radiology for the picc line, and the Radiologist was unable to get it in. So, back to square one with the blood work. Tonight, someone got the bright idea to try getting blood from her scalp. Not only were they successful in drawing the needed amount of blood, they were able to put an IV in the spot. Good thing too, they started her on Vancomycin just in case the Gram + cocci are legitimate. We should know more by Monday. The doctors are also toying with the idea that she may have some type of blood disorder that is causing so much clotting. Ugh.
Elaina still has an increased oxygen need. In fact it's increasing as time goes on. This is very puzzling since all her respiratory virus panels are coming back negative. She is still on the blended oxygen. Thursday she was on 1 1/2 liter flow with a 30% oxygen blend. Friday she was up to a 45% blend and today she is up to 60%, but her oxygen saturations are still low. She keeps hovering between 72 and 77. One of the Respiratory Therapists (RT) actually wanted to transfer her to the PICU so that she could be monitored on a High Flow Nasal cannula or C-Pap. Luckily her new team of doctors didn't feel that this would be in Elaina's best interest, so for now she just stays put. They are going to perform a "sweat test" to see if she might possibly have Cystic Fibrosis. It's a shot in the dark, but they are looking for some reason to explain all the mucus and secretions that just don't go away or get better. In the meantime, they are doing CPT respiratory therapy. This is where the RT uses vibration or thumping on the chest to loosen the mucus before suction. They are also giving her Xopenex first to open the airways and help thin out the secretions. They are doing this every 6 hours. Her saturations went up to 82 for about an hour after her first session, so hopefully this will help as well. The RT is with her right now, so I snuck away out of the room to write this update!
Well, that's all I can think of for now. She's been pretty zonked today since they gave her Versed when they tried to put in her picc line. I'm gonna go snuggle her for a bit before I go to bed. I'll try to update more tomorrow or Monday when I have more detailed information!