Set Backs Strike Again

Yesterday's goals and progress made:
Poop - Twice!
Start TPN - pharmacy was backed up so this didn't happen until 6:30PM despite being ordered early morning - but it did happen.
Increase Lovenox - did that, and his blood tests showed the results they wanted from this med.
Decrease Respiratory Rate on the Vent - He went from 36 when post op to 6 last night!


Which brings us to last night:

One of the doctors recommended using this blood pressure medication (which basically works by making the heart squeeze more effectively when it pumps) because sometimes it helps kids get off the respirator more easily. Sounded great! So they gave it to Rowan and he almost immediately broke out in a splotchy red rash. This was really surprising because he was on this blood pressure medication for nearly two weeks after his surgery. They stopped the medicine, gave him benadryl, and when he'd calmed down - they tried it again. Same red rash reaction. So they're confident it was the Milrinone that made him break out and not some other coincidental thing. He now has a drug allergy. His reactions to the Milrinone made him pretty upset and caused some respitory distress, so they upped his respitory rate to 20 to help him recover.

Cue our walk in this morning - he's on more pumps of medication, his rate on the vent is much higher than we'd left it, and they'd ordered an ultrasound to check his abdomen because it was still slightly swollen (as it had been since he went to surgery even though it had been getting better since he started pooping yesterday). Also, his chest tube put out 40 mL last night. That seemed like a big increase from the 20 some-odd in the 12 hours before that. We were concerned.

He's on two medications that together do what the Milrinone does to help him with his respitory rate. He is back down to a rate of 16 now and they are weaning him again since his allergic reaction has recovered. He's continued to poop. His belly is getting softer, and even though his chest tube is still putting out some, we are trying to stay calm and see what happens. This is still likely to just be normal post-op drainage.

We are planning on trial running having Evelyn join us in St. Louis for a while this weekend. If she does well with being at the hospital more, we are going to try to keep her with us. The advantages being that she gets to see brother more, we are forced to not sit at his bedside and watch numbers all day, and we both miss her a ton and with my grandpa's health, it allows my family to take care of what they need to...but mostly because we miss her.

We'd hoped this would be surgery - recovery - go home. But I think we may be here much longer than we'd like. I still think it could easily be another month or more before Rowan gets to come home. We may need to look at how to make Rowan being in the hospital our new "normal" for a while.