They moved Emmett out of the PICU today and onto the regular pediatric ward. Which is great, progress-wise, for Emmett. But which is pretty scary for us, as we have been on this ward before, and know how overworked the nurses are here. Instead of Emmett getting his own nurse, with a post-graduate degree in pediatric intensive care (a la PICU), now he’ll be sharing a less educated, less experienced nurse with 5 other children. It also means that Mike and I won’t get to leave very much, because while they encourage parents to leave the ward, the reality is that they just don’t have the time to pick up a crying baby, or watch to make sure he hasn’t yanked his NG tube. BUT, as Mike said in the last post, we have seen children in the PICU who are just much more worse off than Emmett, and they need the space for them. Its so weird to think that while we are thinking, OMGosh, how is that family coping with this or that, those other families are probably thinking that about us as well (if they’re aware of all of his issues).
Anyhow…he IS doing well. He has a couple of times a day where he acts painful, but overall much more comfortable. And we’re getting more comfortable holding him, instead of being scared to death to move him for fear that we would cause him pain or knock something loose.
He started taking a bottle again yesterday. And while he was a real champ about drinking yesterday, giving us hope that all that anesthesia had somehow magically made him forget how much he hates eating – those hopes were dashed today as he returned to his old tricks of refusing the bottle. He will be going home with an NG tube, which is rather frightening (have I written all of this before – I can’t remember) because our boy is a big fan of quietly, patiently working at the tape securing the tube to his cheek during his private moments, and then choosing his timing just right to give that pesky tube a solid YANK. And believe me, one yank is all it takes to get that sucker out. I have no idea how this is going to work when we go home, given that we live 45 minutes to an hour away from Addenbrookes and our base hospital. I guess we’ll figure it out. But how cheeky is he?
One last thing – I’m so excited, tonight some of my friends are taking me out for a girl’s night. Mike is being sweet enough to stay at the hospital while I relax for a few hours, while Grandma watches the boys. Then I’ll go back to the hospital while Mike goes home. Last night Mike and I both spent the night at the hospital, which was the first time in goodness knows when that we spent the night in the same bed. And who knows when we’ll get the chance again. So thank you Grandma for making that possible!
Oh, oh, I REALLY last thing – I think I’ve mentioned that we have one car (our minivan) that is on its way to the junkyard…its engine is broken at 86000 miles. But we have the trusty CRV, right? Well, on the way to the hospital yesterday, the CRV started having some trouble driving, and the check engine light came on. Because all we need is more car trouble right now, right? So, somehow in his multitudes of free time, Mike will be taking the CRV into the shop. And we just hope and pray that it is a quick and not super expensive fix. Ummm, because needing to replace 1 car + one adoption + a failing economy + 1 child in the hospital an hour away from our house + super-expensive repairs to our “good” car = how are we going to pay for all of this?