Sunday afternoon (8.10.08) update from Aunt Dart

We've been asked to post a quick update each morning as Cameron and I leave the hospital and Stephanie arrives. We hear that folks sign on in the morning to see how the night went. It's good to hear the feedback as to what folks want and need to know, so we'll do at least a quick morning update before going to bed.

Last night (Saturday night) and up to this point today have remained status quo for the most part. They were able to get Sam's temperature down to under 37 last night and keep it that way. Sadly, the way they do it is by having Sam in a body suit (think wet suit that goes from just above the knees to just below his chest) that circulates cold (water?) continuously. We all feel so bad for Sam because it's just so cold, but necessary. We've asked that they keep socks on his feet and that makes us feel a bit better.

His ICP (inter cranial pressure) hoovered in the mid-teens most of last night except when they were tending to him (coughing him, moving him, injecting potassium into his tube, etc) at which time it'd go up to the mid to high 20s. We learned today that a 'normal' range for any of us is 5 to 15; with the higher number occuring when any of us are particularly agitated, angry or upset. So, his range mostly falls in the 'normal' numbers. Having a context for the numbers is helpful

Sam's nurse last night, Adia, was amazing. Well, actually they've all been beyond amazing. They work around us (we have two chairs in this very large but very crowded room, one on either side of Sam) without complaint. When we get in their way, they apologize to us. We've been told by the staff that our family is wonderful to work with and very easy to deal with. That is often not the case, as we can all imagine.

Adia kept talking to Cameron and I all night giving us information and answering questions. We're a curious bunch and want to know about all the tubes, numbers, graphs, medicines, protocol, etc and they are very willing to teach us. She also wanted to know about Sam; most of the staff does.

We have a great picture of Sam from our recent trip to South Africa posted on his glass door along with a poster that tells about him. Staff stop and look at the picture. It all makes Sam a person they can know while also treating the patient.

Yesterday and today (Sat & Sunday), Stephanie's sister Sue and neice Jennifer, along with baby Jordan, have taken Steph away from the hospital for a couple hours to get a break. Yesterday it was for lunch and to go the the McHouse (as the family calls it - the Ronald McDonald house) to do laundry and hang out. Today they went and saw the movie Mama Mia. Stephanie says the brief outings help her feel refreshed when she gets back to the hospital.

The family is holding up well given the situation; we're tired, sad and worried but we feel your prayers, thoughts and positive thoughts coming our way. We have established a routine where everyone is able to do what they can and Sam continues to always have a family member bedside or just down the hall.

Look for another update either later tonight from Cameron (who's able to blog from the hospital) or Monday morning after we change shifts.

Dart (Karylinn)