The one with all the problems for which we had ultimately no solutions. I had signed up to be their primary, so I’ve had them over the last three nights. They are somehow even more broken than when I left last week. They’d gone into liver failure when I had them initially which resulted in bleeding and coagulopathies. This has necessitated copious amounts of blood products (FFP, cryo, platelets, and PRBCs), at least 2 per shift... every day. All those products have really overloaded their system and resulted in some dramatic edema/anasarca... particularly their torso/body wall edema. So, for educational purposes (and because it’s just so bananas to look at even if you’re not great at radiological interpretation) here are some of their X-rays...
Here is a baseline...
^^^ Heart is a little big (they have a CHD) and lungs are a little hazy. They have both an umbilical arterial line and venous central line, which are a little deep... I did pull them back after we took this film.
This is after a week of getting multiple transfusions daily...
^^^ This is what I came back to after I’d been gone for a week. It’s pretty dramatic. Look at that body wall edema, especially on the left side. I anticipated that this was going to happen considering the day I left their head had already begun to become pretty edematous. Their heart is even bigger and the lung fields are not as clear (there are also some little nodule things in the right lower lobe that are a little suspicious). Umbi lines are gone, they have a LE PICC that’s not well visualized on this x-ray.
Just one day later...
^^^ Now the right side has blown up. (The opaque bit obscuring the right lower lung field is a metal snap from their isolette cover that somehow the X-ray tech didn’t notice when they took the film.) My baby is disappearing, being enveloped by extravascular fluid. Even their liver looks like it’s getting smaller. The only thing getting bigger is their heart... which isn’t a good thing and definitely a result of the fluid overload.
One day later...
By this day their extremities are finally starting to swell dramatically along with their torso. Their head is also so edematous you can barely feel their fontanels or sutures, you really have to smush into their edema. You can see their PICC better on this film.
I didn’t get an image of their CXR this morning, but the body wall edema was pretty much the same. I think we’ve reached our limit to what that tissue can swell without splitting. This morning just before I left they started to have some desaturation episodes, which leads me to believe the extra fluid is now probably backing up into their lungs more in the form of pulmonary edema... aka, badness since it’s going to impair gas exchange. I haven’t mentioned it, but we have been giving diuretics with these transfusions. It, obviously, isn’t helping very much. We still don’t have any answers as to why all this is happening. It’s likely related to a genetic issue, but genetic labs take FOREVER to result since they’re mostly send outs to specialty labs in other parts of the country. Even if we do figure out the genetic component, I don’t think the prognosis is very good for this babe. Which is very sad, but unfortunately we see a fair amount.
My baby is finally sleeping. Turns out she was probably just withdrawaling and roid-raging a bit. She’s in a better spot and exhausted from being up for the better part of 20hrs.
I let her sleep and didn’t do my first set of cares until 2100. At that time I had to do her bath and chlorhexadine wipe down since she has a central line (babies over a certain age with CLS get a CHG bath and linen change every evening for infection prevention) and change her bed. I also did a blood gas too. The whole time she refused to open her eyes, like if she didn’t acknowledge my presence I’d go away so she could go back to sleep.
