Ruby had a rough day yesterday and night. It's been frustrating, and I'm feeling tired and worn out.
Through our yesterday, she was having a lot of coughs and just seemed uncomfortable at times. And she has had lower oxygen saturation on and off.
It's unclear exactly what's causing it, but finally got all the testing and scans done to figure out what was going on and came up empty. Which is good... We did send off a swab to be tested for viruses which hasn't come back yet, but she doesn't have any signs of infection. So my current theory is that her cough may just be getting stronger so her face gets redder when she does cough, and her trach is big enough that she can't really cough "around it" so that probably creates enough resistance to make it more uncomfortable for her. And maybe her trach is irritating things a bit and stimulating her to cough, even when her lungs don't sound as coarse so it doesn't seem like she has much to cough up. They had her on a bit of oxygen here and there but saturations are a bit all over the place.
The whole cardiology team showed up this morning and we're all in a flurry because I had called SPOT (team from PICU that will check on kids if they aren't doing well) but they really did not have the story straight on how things went overnight. After I set them straight they ordered the tests and went away. It's very overwhelming sometimes, because I'm the only one who really knows Ruby and have to keep on telling them things over and over because they don't remember or didn't even read her file apparently. It's like a really bad game of telephone, by the time they hear from three different nurses they have a jumbled story that isn't what really happened. It's exhausting.
She's been very very tired today and hasn't been feeding a whole lot, just sleeping as much as she can. They've given me a total volume that she "needs" and are talking about fortifying her feeds if she isn't getting enough. Yesterday she met the target, but today has not been so good for feeds. Feeling discouraged and frustrated. Just can't see how they expect her to gain weight on what she is currently getting. As much as they say she's getting the correct calories, it's a one size fits all formula that's low fat. It's not great for anyone that's on it, but it's all they have to work with for chylothorax. And she's getting so many meds that slow down her gut, even as we wean them off it really is a lot of meds. I really want to avoid an Ng tube. She'll be able to resume regular feeds on June 16th, so I'm really looking forward to that.
We finally got to see ENT today and the scope went well. Things in her upper airway are still a teensy bit swollen from being intubated for so long, but 90% better than last week. Dr. Johnson was very impressed with how she's doing. Thinking we'll try out a smaller trach tomorrow or the next day to see how she handles it. A bit unsure if we'll be going home with the trach or not, since corking it has been mentioned by ENT. But it really depends on how Ruby handles it.
Really hoping that yesterday and today are just a blip and that we'll be making more progress in the next few days.
Some positive news, but it's hard to be here trying to get her feeding and letting her rest and recover, when the hospital is just so not set up for that. Everytime you turn around someone comes in to poke at her, or bring in a medication or talk to me. Even night time they wake her up for checks, so she definitely isn't sleeping great. Anyways, this is all just say I am beyond sick of the hospital! I want to go home and am so done with hospital logic. Hoping tomorrow will be better.
Please continue to pray for our Ruby. ❤️
