Here is a post from yesterday that I didn't get around to posting here:
April 20th #
Ruby had a good night. She's been a bit fussy this morning, understandably.
The cardiologist will be by tomorrow to go over all that will happen during the cath lab, he's away at a heart clinic today.
The amount of fluid coming out the chest tubes has decreased somewhat, so the steroids seem to be making a difference. They could also reduce the amount of edema, or they could cause her body to hold onto that fluid, so it's hard to say how she'll respond in that regard. We just have to wait and see.
They've been able to take her off of epinephrine with the steroids on board, so that's good. Currently trying to keep her comfortable, but she's still pretty grumpy and isn't settling easily. Hard to see her like this when she can't even cry.
Please continue to pray for Ruby, we are pretty tired and discouraged. She's starting to be resistant to a lot of the meds that help calm her and it's just frustrating to sit here and wait.
April 21st #
Good morning, Ruby had a good night last night, she got lots of sleep. Early afternoon yesterday they gave Ruby another sedative because her heart rate and blood pressure were pretty high (compared to normal). After she got that, her heart rate slowed, her BP normalized, and her oxygen saturation sat in the 90s for most of the rest of the day. A few times she hit 100. They think it is because her slower heart rate allowed her heart to properly fill before pumping.
This morning the nurses came to take Ruby into the OR for a cath lab. This test isn't without risk, but the doctors are stuck. Based on all the testing (CT, echo, etc) they have done, her lungs shouldn't be so wet. They figure that they must be missing something or the tests they've done just aren't showing the real/whole picture. This lab will give exact numbers on pressures, diameters, etc.
The catheter goes into her heart, so the main concerns are causing damage the valve repairs, resulting in leaking, and dislodging the clot (might be a clot, or scar tissue, but they are calling it a clot just in case) which would mean a stroke. They are going to be doing a TEE (echo where the probe goes down the throat) before and after so that they will know if anything gets dislodged or damaged. We are praying that everything goes smooth. There will be lots of people there to take care of her in the event of any emergency. They said this would normally be a day surgery and kiddos go right home after, so we are hoping that it goes well today too.
Ruby still has a lot of edema around her head, neck, and abdomen. She is on diuretics (lasix), but they don't want to increase the dose because it would be too hard on her kidneys. They can tell the condition of her kidnes by certain chemical levels in her blood. They said her vascular system is pretty dry and are hoping the steroids she is on will help her body absorb that extra fluid so she can flush it out through her bloodstream.
Charlotte and I got lots of snuggles with her last night. She seemed to really enjoy that (and so did we). We are now just waiting for her to come back, should be around 4 hours (so noonish).
