Posted (jooosh) in All Posts on April-16-2010

At the moment the kiddo is resting. She’s been doing a lot of this the last day. AS a matter of fact, since last night around 10pm and it is 5:30pm today and she has not stopped sleeping. I think it’s a combo of her body wanting to rest, plus the bevy of meds that are making her sleepy. I’ll tell you though, I’m happy to have her sleeping considering the alternative. Seeing your kiddo go through narcotic withdrawal symptoms is one of the hardest things I’ve ever had to watch.

She shakes and babbles and doesn’t act like herself plus she is so itchy. It’s really heartbreaking and scary at the same time. There’s also no way to know for sure how much longer it will last either. I mean, the symptoms will go away eventually, but it could last even another week! She has some moments of lucidity when the methadone and ativan hit her just right, but it’s not all the time yet. So keep sleeping sweet girl.

On a more positive note, Ella’s bowels are moving along. She had her first poop last night (yay) which is always a big deal after surgery, let alone bowel surgery. They docs are pushing to switch all meds to PO (by mouth/g-tube for Ella), and so far Ella is processing them in her tummy just fine.

We had an unofficial confirmation of this when she had her echo done. The docs had the NO (nitric oxide) stopped and checked her heart to see if the sildenafil was now working instead for her pulmonary hypertension. Peeking over the tech’s shoulder, he confirmed that her echo looked good compared to the previous one. Yay for Ella’s body moving forward! If Ella keeps this track, the next steps will be introducing food back into her system. The rumor is that a very slow drip of food into her g-tube might happen as quickly as tomorrow.

One small bummer is with all the positive steps forward, there’s a good chance they’ll move us out of the PICU. For Ella it’s a good thing, but for her parents it’s going to present some challenges. The regular rooms are shared, which isn’t an issue, unless some kiddo comes in with some major cold putting Ella at risk. They’re not supposed to put kids like this in a room with Ella, but they do. Plus, no couch/bed to sleep on, so we’ll* probably be catching our winks in a chair. Here’s hoping that somehow we can be discharged right from the PICU, but I have a feeling that won’t happen.

Ella’s Grandma West came for a visit yesterday evening. She made Ella this beautiful blanket and matching cover for her frog pillow. Grandma West got to see Ella during one of her more lucid moments, which was enjoyable for both.

Please continue to pray for our sweet girl as she progresses forward. The support that you all have given to us over the last week has meant so much. It really carries us through these times.

P.S. Lola the pooch is still sick. Hoping her antibiotics kick in soon.

*By “we’ll” I mean my saint of a wife who has been staying next to Ella every night so far. Sleeping on a chair stinks so I may be pushing her to sleep in the rig a couple nights so she can catch up.