Well, Miss Ruby has had a great day today.
She's been off the muscle relaxants all day and has been keeping her BP and Sats up. She's wiggling and opening her eyes, which is very nice to see. ❤️
They have weaned her off the vasopressin and are slowly weaning the Epi- since she's able to maintain a good BP being awake, so that will allow her gut to start moving and digesting again. They have her on a different form of lasix now, rather than a constant infusion they just give her a dose every 6 hours. They've started feeds again so it will be interesting to see how she does with a little bit of skim breast milk and portagen going into her tummy. They'll start her on sildenafil for her pulmanory hypertension again now that her gut might be able to absorb it, and that will help to wean her off the nitric oxide- we hope!
Speaking of which, they're weaning the nitric oxide and have changed the setting on the ventilator so that she can trigger breaths and they have turned her peep down to 6 (for those that understand that, I don't fully yet). She's doing well with it so far. She should be off the nitric by the morning if all goes well, she is down to 4 (max is usually 20-40) and they are turning it down a bit every 2-3 hours.
They are assuming she has chylothorax, so that's where tubes that carry lymph from your gut to the blood stream leak out a milky fluid called chyle into the chest cavity. The chyle is partially(?) formed by triglycerides, so fat, and reducing the amount of fat going into the gut allows there to be less production of the chyl. When there is less chyle output into the tubes this allows them to heal more quickly. So they are giving her a low fat diet for 6 weeks or so, which won't produce much chyle in her gut. The fluid should be noticably milky when it's draining from her chest tubes if it hasn't fully healed yet.
She has a lot of fluid draining from her chest still, but it's hard to say if it's chylothorax or extra fluid due to her increased CVP (pressures in the right chamber of her heart). That can cause some backpressure in the blood vessels leading to her heart which leads to fluid seeping out of the pourous vessels. The doctor explained it like reducing the flow through a soaker hose. It's really not clear, but they should have a better idea of what's going on after she's been back on feeds for a bit.
About last night...
Last night her right foot IV broke, and that's where her epoprostenol/aka prostacyclin was going in (the new drug they started yesterday). It's hard to say when it broke, but our nurse today was saying she figured that was why she had such a bad pulmonary hypertensive episode last night- she just wasn't getting the medication. It only runs at 3mls an hour so it takes a long time to accumulate and show it's not going in, and her foot was soaked a bit after she recovered from the episode. Once they realized the IV was gone they switched it to go into a different line and after that she had a fairly good night. So that seems to add up. It was nice to have some fresh eyes to look at the situation today, because I had wondered about that last night after everything calmed down, but wasn't sure how it all worked. Frustrating... but I'm just really relieved if that was the only thing causing the issue, and I'm incredibly relieved that she got through it considering.
Everyone has been cautiously optimistic about things today. Still handling her with kid gloves though and realizing that things can change in the blink of an eye. That's just the nature of the situation.
With all of the set backs it will likely be another month before we can go home. Weaning off the meds, monitoring and treating the clot, potential chylothorax, recovering from ventilation... Etc. Etc. She's still got a lot of things to get through. Even when we get home we'll have to be hyper vigilant with everything she's been through, even more so than before her surgery. But feeling better about things this evening and celebrating the big strides we've made in the past 12+ hours. It really is a roller coaster ride here, but in all of this we can still say that God is good and we know He is walking with us through every moment, good and bad.
Anyways, if you made it this far, bless your heart. And as always, thanks for being here, and thinking of and praying for our sweet little Ruby ❤️ hoping we have a good night here in PICU.
Updated to add: we won't know if she has a bug for a little while, testing has to come back still, as it takes 48hrs. Her temp is still running a bit high. So pray she's negative for pneumonia etc.
