Saturday, March 19, 2011

It’s been too long, and not long enough

So Jillian and I haven’t written in here in a very long time. In some ways we’ve been avoiding this blog – it has a lot of painful and hard memories associated with it, and I think we feared writing in here as well; at least I know I did. To me, writing in here meant that I was at CHOP and Aurelia was not well.
I remember the joy Jillian and I felt when we celebrated our ‘Home” day, where we had been home with Aurelia longer than she was admitted at CHOP. I remember all the times where we looked at each other and one of us said, “We really need to do a blog post.” I remember, too, feeling reluctant about writing anything, because I was at home and that blog was about some mythical past where I was at the hospital.
Well, we’re back at the hospital again, and once more writing for a wider audience. Aurelia has had a series of colds for the last two to three weeks and a few days ago she developed a particularly nasty cough. This worsened until yesterday when she developed a low grade fever. Being a CHD baby with a constellation of other issues the safe and prudent bet was the Hershey ER. We convinced them not to send an ambulance (we were both getting very nervous about this first visit, even though we know that these stays will be all too frequent), and even though we both knew that we’d be admitted, we secretly hoped for a lookover and then home with daily trips for observation.
No such luck. We’ll be here for at least one more day, but I suspect longer. Truly, I’m thinking we’ll be here at the hospital until Aurelia is fully clear of her nasty cough. She’s receiving deep suction, PT, and regular breathing treatments. She’s also on a nasal canula which they attempt to wean throughout the day (with no success). Other than that, it’s life as much as normal allows.
So far we’ve only had to have one chest x-ray, and we’re suspecting an echo at some point today. Thankfully our CHOP cardiologist has an office in Harrisburg, so it’s easy to keep them updated. I’m guessing that Monday will be spent updating the CHOP teams with all that’s currently going on here at Hershey.
The folks here have been wonderful, and very attentive. I’m so thankful for the CHOP parent binder that has so many of Aurelia’s summaries and information inside; it’s been a blessing having that information at our fingertips.
I’m surprised, too, at how quickly our hospital lexicon emerged for this latest stay. I suppose having a CHD child is a bit like riding a medical bicycle where you never really lose what’ you’ve learned.
At any rate, we’ll keep you posted throughout the day, and maybe we’ll get over our reluctance to writing and maintain this blog once we leave here as well.

1 comment:

  1. Please ask your doctors to allow you to give her Black Elderberry extract. It has shown in studies in other countries to boost the immune system, even in patients with leukemia and HIV. I just know that her little immune system is underdeveloped and it would help her!