One more thing

I was thinking about a conversation I had with Bill today and I have to share it with everyone.  He was feeling pretty low about his prognosis and I was trying to get him motivated to go to rehab and finish his engineering degree.  I told him that one of the facilities I spoke to today told me that they get the latest technologies and their patients often get to participate in clinical trials and that the people that get to do this are young, healthy, motivated, and working towards goals.  After I finished talking he looked at me and mouthed "like me."

Yes, Bill.  Exactly like you.

Thank you for the cards!

Bill wanted me to pass along his thanks for the cards that many of you have sent.  It really means a lot to him to know that people care.  If anyone else would like to send a card (nudge, nudge) you should do so.  I would not wait too long, we may be out of here in a week or two.

West Virginia University Hospitals
Andrew W. Beck
Ruby Memorial Hospital
1 Medical Center Drive
Morgantown, WV 26506

Thanks again!

Monday, November 30

Today was a bittersweet day.  Bill found out this morning that he won't walk again and it's been rough.  For those of you with stories about your coworker's uncle's college room mate who was given the same prognosis and then defied everyone and walked again: keep those stories coming.  The doctors are telling us that it is not possible and the scientist side of me understands that when a spinal cord is injured the way his was that it is not possible to walk, but the hopeful, optimistic, loves-a-good story part of me wants to think there is some little chance he will.  And when Bill has had a chance to process all of this and is a little farther along on his road to recovery, he may want to have some of that hope as well.

So, that was the bitter part of the day.  The rest of the day was fairly busy and he should sleep well tonight.  His doctor said he's come a long way on the ventilator and they spent most of the day turning the settings back.  I'm not sure what sort of timeline we are looking at in terms of getting him off the ventilator, but it looks to be just over the horizon.  Yay!  His heart did much better today and I don't think he had a any bradycardic episodes.  Double yay!  He had speech and swallow therapy this afternoon and was able to talk around the trach as well as swallow some thickened cranberry juice.  It went very well and he will have another session tomorrow.

I'm not sure how much longer he will be here in Morgantown.  I don't think he's medically stable yet, and in fact tonight he is having another round of CT scans to look at his GI tract.  However, he's made a lot of progress and it won't be too much longer before he doesn't need to be in the intensive care unit.  He will likely spend a day or two in a regular room and then go on to a rehabilitation facility.  I talked about rehab with him today and he wants to get into a program, work hard, and become as independent as possible.  I'm amazed by his strength and courage and know that he will get through this and blow us all away.  I can't wait to see it!

Sunday, November 29

Today was a better day.  The GI issues of yesterday have largely resolved themselves although it will likely happen again.  Part of how our digestive systems work depends on us moving around regularly, which stimulates things inside to keep moving as well.  For someone like Billy who is not moving, and for whom movement has some negative consequences (see the low heart rate episodes of the past few days) this presents a bit of a problem.

He was bradycardic (the medical term for his low heart rate episodes) this morning, but they were able to bring him back up with drugs.  In the meantime, his body decided to forget how to thermoregulate and his temperature dropped pretty low.  From what we are learning, this is all fairly standard for people with spinal cord injuries.  There is an enormous shock to the body and everything gets thrown out of whack.  His spinal cord is swollen and even though the areas that control his autonomic nervous system (which is responsible for keeping your heart beating, your lungs working, your body temperature at 98.6, etc) were not damaged in the initial injury, they are affected by the swelling. 

He asked me to take his picture today.  I've been secretly snapping grainy pictures with my phone over the last couple of weeks and at some point I will show him those.  I also told him that I was keeping this blog and asked if it was okay with him to post the picture here.  It meant a lot to him to hear that so many people are concerned.

Oops, I forgot to mention this bit: both chest tubes are out!  He was pretty pleased to inform me of that this morning.  I don't know if he knows just how many tubes and holes there are in his body or not, but he's excited to see them go!

Saturday, November 28

Some days are good, some days are crummy.  Today was the latter.  He's having some gastrointestinal issues that are part of the package deal you get with a spinal cord injury.  So most of today he felt nauseous and bloated.  All the pressure in his abdomen seemed to affect his heart rate (this is my totally non-medical opinion here) and he had a couple more episodes.  If things don't improve tomorrow they will probably put him back on dopamine to help regulate his heart rate.

He's asking for Pepsi pretty regularly and has been for a couple days.  Today he also asked about rehab and I'm pleased that he's able to think past this current discomfort (putting it mildly) and thinking about the future.

Here's hoping tomorrow is a better day.

Friday Evening

I can't believe I forgot to mention this earlier- but he's able to shrug both shoulders and move both arms.  It's just a bit and it's all upper arm movement (so, nothing really from his hands) but it's awesome to see this.

Friday, November 27

Today is going really well.  He's awake and more lucid than we've seen him so far.  We are getting better at reading his lips and we are also using an alphabet board to spell out words.  When we tried the board yesterday he would sort of space out before we could get a whole word out, so the fact that we are communicating sentences and ideas today is remarkable.  He remembered that I told him the other day I am borrowing his truck, he wants us to speak with our uncle about him becoming a Mason, and he wants to know how much I pay for my cell phone each month.  It's interesting to learn what his concerns are after the 12-day trip he's been on.  He is also asking about his condition and wanted to know details about the accident, his current state, and how much he will recover.  He's saving these questions for Dad and so far Dad has been honest and straightforward with him but has not used the words "paralyzed" or "quadriplegic".  The truth is that we don't know how much he will recover but we know that it will take a long time and that's what Dad has told him.  I think he grasps the severity of his injuries which is tough.  I expect that he will become very depressed and angry during his recovery and I am afraid of that.  I wish there was some way I could save him from that pain, but I also recognize that it will be part of his recovery and it is important that he work through it himself.