Home for the holidays

Can you believe that just three weeks ago today Ann and I were spending our first day in Denver wondering if Chris would open his eyes? Today we brought him home for a leave of absence from Spaulding and enjoyed a wonderful Christmas day together.

This happy day was made possible by the hard work Chris has been doing in rehab and by the help of our loved ones. Chris worked with me, Ann, and my sister Kris (in the photo) to practice transferring from the chair to the car so that he could come home with us for the day, and his brother-in-law Herb built a ramp so that we could easily get him into the house. It was so great to see him relaxing in the living room and laughing at the antics of the dogs!

We were all a little tuckered out when we delivered him back to his room at Spaulding, where he faces another week of hard work with the PTs, OTs and SLPs. I know it's tough for him to be there, but I also know that he will be out of there before we know it. He's making such great progress, I feel in my bones that it won't be long before the staff at Spaulding start making plans to send him home. His friends at Loon have dubbed him "Mr. Unbreakable," which is perfect to describe his spirit. That's what's going to keep him going when he starts going stir crazy, his own unbreakable spirit and the ongoing support of his wonderful friends. We look forward to seeing you all soon, either at Spaulding or in the real world!!

Warmest greetings of the season to all.

Chris & B

Boston, you're my home

The eagle has landed!

Chris has been installed at Spaulding Rehab, room 803W. The address is 125 Nashua St, Boston, Ma 02114.

He will be starting his program of rehabilitation to address the residual effects of the brain injury, primarily weakness on the right side of his body. I have no doubt that he will work hard to get back home as soon as possible.

Out of the west

It seems unreal that I will be bringing Chris home tomorrow. Two weeks ago today at this time I was sitting at his bedside hoping that he would open his eyes and shaking with fear that that might not happen. I remember that the moon was full and clear in the sky, and I prayed that she would watch over him as he slept. Now the moon is a waning crescent, closing another cycle. In the Wiccan tradition, this is a time to banish troubles and worry, vanquish obstacles, and eliminate illness.

Chris and I both know that he has a lot of work ahead of him, but I have no doubts that he is up for the challenge. Every day he shows his determination by standing longer and working harder than even the therapists expect him to. They wanted him to stand up for 5 minutes, he did 10 - and then insisted on doing it again. He's done his own mini-OT sessions by shaving himself (with a little help on the right cheek.) The right side of his body is still much weaker, but the neurology doc firmly believes that this will come back with rehab. He didn't hesitate for a second this morning when Chris asked if his speech would recover; he reassured us that it might take a month or two, but everything would be just fine.

I don't know why we were among the lucky ones. I've met people here whose loved ones have been in critical conditions for 6 weeks, 2 months, or more. I don't know what we've done to deserve being able to go home after only 2 weeks, but I will thank the moon and stars and whoever made them for giving us this gift, and I thank all of you who have continued to send your warm thoughts and prayers.

Continue to watch this space for Chris's coordinates at Spaulding. I'm hoping he has internet access there; if not, I will print out all your emails and bring them in for him to read. I know that the support and encouragement of his friends is what really keeps Chris going, so I will also post visiting hours for anyone who is in the area. He will be so happy to see some familiar faces other than mine!

Peace and joy,
B

Counting down

Well, it looks like we'll actually be winging home on Tuesday due to administrative delays. No worries - just more paperwork that had to be generated.

Chris hit another milestone yesterday - they removed the n.g. feeding tube. As usual, differences of opinion abounded - one doc said it would be okay to just take it out, another recommended replacing it with another kind of tube, a third said it should absolutely stay in because it wouldn't be easy to put in a replacement. And, as usual, none of them were talking to each other to explain their reasoning, so the nursing staff had no idea how to proceed. I asked the speech therapist if she could get the opposing parties on the phone to talk it out, and apparently they decided that Chris was eating well enough that they could take it out. He still can't handle liquids, though, so they are giving him IV fluids.

Having that thing out of his nose made an immediate difference in how well Chris was able to swallow. He ate more than half of his delicious pureed beef dinner, and all of the strawberry yogurt I brought in. It's also helping his speech some, especially with nasal sounds. M's and n's are clearer now.

The docs continue to be amazed at how fast Chris is recovering from his massive injury. The neurosurgeon, the one who had said the prognosis was grim when he completed the surgery, says Chris is WAY ahead of the curve. Let's all just continue to pray that Chris stays on this path, with no major detours, so that he will be able to come home soon.

B

Another weekend approaches

Sorry I didn't post yesterday - for some reason I couldn't log on.

This will be a brief post, since I need to get over to St. A's to help Chris eat breakfast.

Yes! Chris is eating pureed foods now; the barium swallow test went well on Wednesday. He still has the n.g. tube so they can feed him from 8 p.m. to 8 a.m., but he is allowed "real" food during the day. The speech therapists thinks this will help him strengthen his tongue and swallowing muscles, which will also help with speech. As soon as they think Chris can eat enough on his own, they'll take the tube out.

Yesterday's activities also included ultrasound of legs to look for blood clots, removal of the IV filter (that was in place to prevent blood clots from getting to his lungs), CT scan, and more intensive PT. They actually hauled Chris to his feet for the first time and made him stand for a few seconds. Yay!! I was going to take a picture, but they didn't tie up his johnnie in the back, so it wouldn't have been appropriate.

Now, for the drum roll........ They are shipping Chris out of here on Monday!!! He will be flown back to Boston and spend some time in Spaulding rehab. Wahoo!

Gotta go - breakfast time approaches. I will post more later today or tomorrow.

B

And now a word from our hero

On a happier note, since I noticed that Chris had much better hand and finger control, I decided to bring in my laptop and give him another try at typing something. Here's his first message:

**********************************************************************************
hi fans a communication from the west.
first, thanks for all those calls, letters & cards.
they really raised my spirits during a difficult time. the big focus now is to arrange for a medflight b acck to boston, and to get me on it.

*********************************************************************************
I second that emotion.

B

In which the medical freight train comes to a screeching halt

Yesterday was an interesting day. Readers of the story so far will know that Chris was scheduled to have his NG feeding tube swapped out for another that would go directly into his stomach, a procedure which had been described as "simple" but which had been attempted unsuccessfully on Monday.

When his critical care doc came in yesterday morning, I asked if he knew exactly what they were going to do differently this time. He didn't really know - thought they would try some different sedation. I asked if it there was any other way to do the procedure other than putting a scope down Chris's throat, and he said again he wasn't sure, but that he would look into it. He also said the G.I. doc would come up some time during the day to talk to me about it.

Throughout the morning, Chris shocked and awed the docs and therapists who came in to see him. He was even able to speak a few more words, including part of his name (the Dufresne part, interestingly enough) and the sentence "I'm doing my best." The one person who didn't come by was the speech therapist, the one who had originally made the determination that Chris would need the PEG (feeding tube in the stomach), because she thought he didn't have the tongue and cheek control needed to swallow. I asked the nurse if speech therapy was scheduled to come by, and she said no, because the therapist thought he wasn't able to participate in any therapy. I asked if she could come by, since Chris had improved so much, and the nurse said she'd put Chris back on the list.

I was with Chris all day, except for an hour at lunchtime, and neither the G.I. doc nor the speech therapist came by. At 3:00, an hour earlier than they said he was scheduled, the G.I, gurney came by to pick him up.

I got a little agitated. I had never had the chance to ask G.I. what they were going to do, and if there were any alternative methods to do it. I had never had the chance to ask the speech therapist if she still thought Chris wouldn't be able to swallow.

When I asked the nurse if someone could tell me that Chris absolutely, positively still needed this surgical procedure (which the original G.I. doc had said might now require intubation), she got a little agitated. I asked her when was the last time the speech therapist had seen him, and she saw that it had been 4 days, 4 days during which Chris had made remarkable progress in every other way. She paged the critical care doc and the speech therapist, but neither responded quickly. I spoke with Chris about it, too, and he agreed that he didn't want the procedure. It was called off. (Still, I might add, without the G.I. doc coming to talk to me, even though he was on the same floor a couple of corridors away.)

I called my sister while all this was happening, so she could talk me down from the ledge and give me some of her professional experience. She reassured me that, if the staff had thought I was being completely out of line, they would have told me so. I also remembered that she, along with almost everyone else whom I had told about the procedure, had asked me why it was necessary, if the docs were sure Chris wouldn't be able to swallow on his own. I guess it just took me a little longer to ask the same question with enough force to get the hospital staff to listen.

So, shortly after my blood pressure came down and Chris was re-settled in his bed, the speech therapist came by to do a quick swallow test. She gave Chris an ice chip, which he handled easily, then a spoonful of water, which he coughed on a litte, then some apple sauce, which he swallowed easily. She said that, since there was still a lot of concern about Chris aspirating something into his lungs if they just went ahead and fed him, she would like to schedule him for a modified barium swallow test, but that he looked like a good candidate for that at this point. If he passes that, they might keep the N.G. tube in as backup for a day or 2, but feed him by mouth as much as he can handle.

Thinking about all this still makes my heart race. Why didn't the hospital staff think to ask if this procedure was still necessary? Why did I have to ask these basic, common-sense questions?

I am girding myself to explain my decision to the docs this morning. I am convinced I did the right thing; I just hope it doesn't slow down his return to home.

Speed bumps

Yesterday was not the best of days for Chris. He has developed a fungal infection in his mouth which seems to be pretty uncomfortable. It's no doubt due to the fact that he's only breathing through his mouth - the n.g. feeding tube in his nose makes it difficult to breathe through his nose. It also makes it harder to swallow or cough, so I was happy that he was scheduled to have that replaced with another in his stomach.

Unfortunately, they weren't able to complete the procedure. In order to place another feeding tube into his stomach, they had to put a camera down his throat to look around in there and find the right place. When they tried that, though, Chris's larynx kept spasming. They were afraid he was going to stop breathing, so they halted the procedure. They plan on trying again today with another "cocktail" of sedatives to prevent that from happening.

Chris didn't seem too upset about it, but it really brought me down. I keep looking for signs every day that Chris is on his way to a full recovery, and I was disappointed that yesterday was not delivering what I wanted. I know, though, that my own unrealistic expectations were getting in the way. Chris did make some progress yesterday. He received a slew of wonderful cards and photos from his enormous fan club, and he reached out his hand so he could hold them himself and read every one. The PT and OT were thrilled with his physical progress. The OT started with range of motion exercises in one arm and was delighted to see a lot less tone and more flexibility, so she went immediately to the other just to see if it was the same. PT and OT worked together to sit Chris up on the side of the bed and, for the first time, he held himself (more or less) upright, showing that his balance is still good. He spent several hours sitting up in the chair watching extremely stimulating day time television. And, finally, he spoke a very clear "No" last night, the second perfectly understandable word he's uttered.

So, here's the prayer du jour - that they will be successful in getting that foul tube out of his poor nose. As my sister told me yesterday, our prayers are getting more specific. First it was "Let Chris make it through this," then it was "Please help Chris get better every day," now we're offering up a laundry list for the MRSA (superbug), mouth infection, and feeding tube. The biggest, of course, is still focussed on getting Chris back home for his rehab, so he can get visits and harassment from his family and friends. I know there's a long line of you waiting for that; I think I'll sell tickets.

B

Slow and Steady

I know it's not really Chris's style (at least not on the slopes), but his progress can be described as slow and steady. He was kicked out of ICU yesterday afternoon; since all his vitals were really good (except for that pesky fever), he doesn't need that level of care. His new room is really nice. No view of the mountains, but he can at least look out the window at the sky.

He still can't really speak clearly* or move around on his own, so they are monitoring him with a tv camera, which is reassuring. His arms are still weak, but he's now strong enough to push the button on the tv remote control, as long as it's positioned where he can reach it. The OT and PT both said that his range of motion is getting better, and the level of "tone" or spasticity in his arms and legs is much lower, a very good sign.

Today was a really good day, though. He sat up in the chair for a couple of hours, and lounged in bed the rest of the day watching tv and dozing. He woke up a bit for a visit from a couple of his dear friends and ski buddies, who teased him mercilessly and made him laugh. (Thanks, guys, we both needed that!) We will cherish the nutcracker that was presented as a get-well token. Unfortunately, Chris didn't get to see the big smiles on his friends' faces; because one of his tests came back positive for a nasty bug, they are making everyone who contacts Chris wear gloves, masks, and gowns to prevent the bug from spreading any further. This evening, they told me (after I'd spent most of the day in a sweaty plastic gown) that only a couple of the cultures showed a very slight positive reaction, and that the precautions might not be necessary after all. Still, I want to be super-cautious. The place I'm staying, Yaffe House, is a temporary home to lots of folks who have loved ones in critical care at St. Anthony's. I'd hate to bring anything back that might be passed on.

Back to Chris's schedule: He's going to have another busy day tomorrow. Because they suspect he's having difficulty swallowing and coughing because of the feeding tube in his nose and throat, they're going to remove it. Because it's important that he get adequate nutrition for his brain, they're going to put another one directly into his stomach. He may not need it for long, but they think it will still be a few days before he will be able to eat a real meal in the ordinary way, so he'll still need the tube to help get the nutrients in there. They might try the swallow test again on Tuesday if he's still there.

We are still hoping to get Chris on a plane back home as soon as we can. One of his docs is very conservative and might not want to release him fpr a while, but another says he can't see any medical reason why Chris can't be whisked away as soon as possible. The change of feeding tube will help with that; the only other thing they will want to do is remove the anti-clot filter before he goes. We're hoping doc #2 will be able to convince doc #1 that Chris is good to go so we can get him in rehab in Boston ASAP.

Again, my deepest, deepest thanks to all of you who are helping us through this. I believe that Chris's great progress so far is being supported by the positive energy and prayers flowing his way. I also know that I would not have been able to get through this myself without all the emails and phone calls and cards and virtual hugs. I look forward to getting us both home soon so we can see you all and thank you in person.

Much love,
B

*Chris's clearest word so far has been "Wow!" which came out this afternoon in response to the latest news from Loon. I know he will want to get back there soon and see how things managed to muddle along without him.

The story so far

Thanks to all who suggested I set up this page for Chris. I hope that through this, you will all be able to share in his progress and keep the positive energy flowing his way.

The story to this point: as most of you know, Chris took a fall on the slopes at Breckenridge on Sunday. According to Harlen, who was skiing right behind him, he caught a downhill edge on the last run of the day and pretty much did a massive face plant. (For you non-skiers, he landed forward on his head.) Unlike most of the face plants in Chris's skiing career, this one he couldn't just shake off. He suffered a severe head injury which caused massive bleeding (a subdural hematoma).

Thanks to the incredibly well-trained ski patrol at Breck, Chris was brought down the mountain and med-flighted to St. Anthony's hospital in Denver, one of the best Level 1 Trauma hospitals in the country. He had brain surgery immediately to remove the massive clot and stop all the bleeding, which was extensive. Chris's sister Ann and I caught the first plane out of Boston on Monday. When we got here, the doctors and nurses were not holding out much hope - he was in a coma and on a respirator, and they couldn't tell us when (or even if) he would come out of it.

On Tuesday, when the docs did morning rounds, they were actually able to get Chris to open his eyes a bit when they shouted at him and respond to commands to wiggle his fingers and toes on both sides. Ann was in tears. (We've discovered that she cries at the good stuff, and I cry at the bad stuff, so we're a pretty good team.) He continued at about the same level all, day, not opening his eyes on his own, but able to muster up the energy when someone asked him to loudly. Still, no one could tell how much more progress he might make, since he was pretty deeply out of it.

Wednesday - Chris began to respond more quickly to commands, and actually to be able to shake his head to indicate yes or no. He was "responding appropriately", meaning it wasn't just random movements, he was really communicating. And, for the first time, we experienced the thrill of him opening his eyes on his own, without being asked, when Ann and I were in the room talking to him. Of course, the fates would not allow us to think all was well - a culture came back positive for pneumonia. He was immediately put on IV antibiotics. He also was sent down for another MRI, and the sedation from that pretty much knocked him out for most of the day.

Thursday - Chris is continuing to show his indomitable will and incredible strength. There was a lot of discussion during morning rounds as to whether he would be able to come off the ventilator. Some docs were in favor, since he was breathing completely on his own and his lungs sounded good and clear. Others were opposed, saying it was still risky since he wasn't awake most of the day; they were concerned he wouldn't be able to clear his throat or prevent his own tongue from falling back. They gave him a breathing test to check lung strength and Chris passed with flying colors. The yeahs won out, and the ventilator tube was taken out around noon.

The docs are absolutely astounded at the progress he's made in such a short time. One of them said he never would have believed it, since Chris's prognosis was so grim on Monday. Chris isn't saying much yet, but I am holding the phone up to him when his friends call, and he's managing a rough "Hi." (As Terry and Harlen would say, in Wookie.)

Friday - Chris is continuing to make progress every day. He slept well through the night without the ventilaotor (just a CPAP, which he uses at home). They sat him up in a chair for a while (yay!). He still can't really talk, except for except maybe the word "water", but he's still pretty weak. We've been heartened that, so far, he hasn't shown any deficits except for that - he's moving everything and understanding everything. We hold the phone up to his ear when people call, and he responds really well. I think he's sick of hearing just me and Ann talking to him all day. The nursing staff let him keep the awesome ballons DSUSA sent, but they won't let flowers or anything else in the room.

They gave him a swallow test to see if they could take the feeding tube out, but he's not ready for that. They'll let us give him ice chips, though, which he savors as if they were drops of Yquem. He's also running a fever, probably from the pneumonia, which worries me. I thought the antibiotics he is on would knock that out, but the temp remains...

Today, Saturday morning - Right now, Chris's sister Ann is working on getting him on a medical transport back home as soon as he is able to do rehab. We think he would do much better for getting back to his baseline if he worked with his own docs, and we think it would lift his spirits to be able to get visits from his friends. We're not sure yet if Blue Cross will approve it, so keep your fingers crossed.