Good morning from rm#6215. Uggh… Emerson started spiking fevers Friday, continuing through yesterday & ranging from 101◦ - 103◦. Yesterday she also started dumping (stool) & vomiting (what looked like stool). I turned off feeds & headed in. I didn’t pack an overnight bag, though, thinking this time maybe we could get away with a quick turnaround in the treatment center. Silly me – you’d think I’d know better than that by now!!
Three anesthesia docs, 1 PICU nurse, and the transplant intern all attempted peripheral IVs & none were successful, so Dr. G came in from home & took Eme to the OR last night for a central line. It’s becoming very difficult for me to draw the line between advocating for Eme & respecting the medical staff. She’s lost all peripheral IV access. Most people don’t believe that’s possible. I know it though & the primary team knows it. Still, they hope to “get lucky” each admit and avoid another surgery. I understand that, but at what point is it enough? She was poked upwards of 10 times yesterday & it’s really not fair, especially given that we all know the probable outcome. It’s very traumatic for her.
Anyhow, it’s 11:30am & Eme’s still sleeping. She’s not febrile this morning, but equally concerning her temps are low - 94◦. They’ve sent tests for just about everything. She’s scheduled for an intestinal biopsy today. They did lower her immune suppression on the last admission, so there’s definitely a concern about rejection (which presents as dumping).
Dr. L is on staff this week. His head was hung low walking into her room. She didn’t even make it 2 weeks out… I asked him if this is ever going to get better. He said “it’s supposed to”. Overall I’m having a really hard time wondering when (or more accurately put, “if”) it ever really will.
I have no idea what this means for our plans to move home before Christmas. Given that the deal was she had to stay outpatient, I’m guessing it’s not too promising. Further, I honestly don’t think I’m comfortable moving back until she’s able to string together a good month out. Otherwise I fear we’d pack up, move home, & be right back – only then I’d be stuck here with no place to stay. Having said that, though, it ultimately comes down to what the long term expectations are for Emerson. If the team honestly expects this to improve, I want to stay until she’s more stable. If not, though, I want to go home & give her some quality of life with her Daddy and brothers - however short that time may be. I think a care conference may well be in order for the end of this admission.
That’s the news for today. I’ll update again when I know more. It’s “Cyber Monday” – maybe I can get my Christmas shopping doneJ.