I’m so sorry to hear about this setback, Marley. Good thoughts and prayers for your whole family.
GT
Our thoughts and prayers are with you, and him. Keep your chin up and hope for better times ahead.
I’m sorry Marley.
And just to let you know. My brother remembers absolutly nothing from the time he had a tracheostomy. A small blessing. And he went on to make a full recovery.
That’d be nice if it were the case here - but if he has the thing for a motnh, I doubt he’ll forget about it. It’s nasty to see, and it looks very painful when they suction his throat through that thing.
Marley, I have nothing much to add, except that when things seem darkest, it is worth remembering that they fully expect him to recover and 10 years ago this would have been very unlikely and 20 years ago not even a reasonable possibility. As much as this stinks and it does, just keep thinking he will get through this and resume his interrupted life. Losing a year of school can be recovered from and his strength should recover fully with Physical therapy from everything you have said about him.
Try to keep your spirits up and remind your mom to that she needs to keep her spirits up. I truly hope for a speedy recovery for all of your sakes.
Best of luck and my best wishes,
Jim
Sometimes I get on scary carnival rides, like roller coasters, and it gets to a really bad part where we’re being whipped all around and I think “OK, this is a really bad part, but eventually I will be on the other side of it…I just have to hang on and keep breathing.”
This sounds like one of those times.
Hang on, Marley23. Keep breathing. We don’t know how long this ride goes, but eventually you will be on the other side of this.
Marley that sucks that Tyler took a little turn for the worse. He seems like a fighter though. I’m bettin’ he comes through all of this. I’ll be keeping Tyler, you and your whole family in my thoughts and prayers. Keep staying strong for Tyler.
Tyler should have another operation today that will allow him to speak - at least in time; I assume his throat will be sore at first. They say the CSF leak is gone, but this trache has broken my mom’s spirit a little. She was crying on the phone a little bit Tuesday, just out of sympathy for Tyler, and admitted can’t be too happy even with the good news. Time doesn’t really move properly when you spend a lot of it at a hospital, and she wonders what it’ll be like not to be at the hospital. Like I said, she didn’t come home at all for the first month - she probably hadn’t spent more than a week away from our house in the 20 years we’ve lived there.
So, on we go. There’s no particular endpoint in sight, and since we’ve had all this time to ponder our situation, we - including Tyler - also realize how long his rehab will be. His arms are a bit stronger than they were, but he’ll need physical therapy (today marks six weeks in the hospital), speech therapy and whatever else.
Tyler’s attitude has bothered me for weeks. He’s tough, but sometimes I think he just wants to wait this out. He can’t do that. He’s not going to get stronger unless he pushes himself to his limits and makes himself uncomfortable, as bad as that may feel. I’ve wanted to go in there and raise hell about this (I’ve been thinking of it as “the Patton speech”) for a week or two, and when I finally mentioned it to my mom, she said I should go for it. She and my dad have noticed the same thing. I don’t want to add to his problems, but I think he needs to change the way he’s looking at his recovery.
Thanks for the update. Sending more supporting thoughts your way
Marley - You can tell him what I learned from my mother’s therapists after she had a massive brain bleed. At first the doctors told us to find a long-term care facility and put her away, but she insisted on fighting. Once she entered rehab, she not only did everything they asked, she had us working with her at home. We bought flashcards and pre-school numbers and alphabets and colours, because all that was gone. She’s made a remarkable recovery. But the most important thing is, the therapists told us that many people come into therapy and either expect everything to be done for them, or just lacking the will to really push themselves. Or they start out gung-ho for the first two weeks, and when it doesn’t magically get easier, they give up. Those are the people who never make a full recovery. It has to come from within, just like with an athlete. It’s the grumpy, stubborn, irritable people who make a substantial recovery, because they’re too ornery to let a stupid illness win.
Best of luck to all your family.
StG
Marley23, yet another person coming late to thread who wishes to express sympathy for what you and yours are going through.
Your brother is likley going to have a slow and prolonged recovery, although attitude / determination definitely helps. I noticed in one of your posts on this thread you were talking about his finishing grade 9 with tutoring and stuff; I think you’re better off to expect that he may not finish grade 9 with his class this year, but may be looking at getting on with school after he gets all his treatments behind him and has some recovery time after that.
The docs at the proton center in Boston are really great - I’ve referred a few patients there in the past and my patients were quite pleased with their experience there and I’m been happy with the results so far. If your brother does have to go there, he’ll be in good hands.
When I hear our current Minister of Education defining “school failure” as “anybody who didn’t finish high school by age 18 or college in the theoretical time” I feel like shaking him till his insides liquify, then giving him a kick into the next universe.
I had classmates and friends who “lost” one year to car crashes, hepatitis, having been placed in the wrong year (this isn’t exactly news, many november and december kids actually “belong” with those born the next year), lab accidents, cancer. At the college level, the “years” of Spanish colleges are understood as a minimum by anybody who’s been there. The hepatitis one has a BS in journalism and owns five newspapers: that’s a failure? The one with a leg amputated due to cancer is an accountant and a volunteer in a group that does “family relief” for families of people with brain damage, that’s a failure?
A year “lost” is nothing. Go kick your bro’s ass back into gear so he’ll have a better shot at finding his life back, and stop worrying about “losing” years!
It’s something that happened to cross my mind as I was posting, not something that I occupy my time with. Once he gets out of the hospital and starts getting well, I’d like his other inconveniences to be minimal.
My parents are starting to look at physical therapy locations, by the way. Tyler should be able to talk a bit soon, although in the near term, I don’t know if they think his voice will be back to where it was before the tracheostomy (very faint) or closer to where it was pre-surgery (scratchy but audible).
We’ve had a good couple of days here. Tyler is more alert as the swelling in his brain has gone down, he’s in a good mood from what I’ve heard and he’s doing his speaking exercises - don’t know about the results yet, but it’s something. Today he is having a shunt put in his spine again, which is kind of where our problems began weeks ago. He’ll probably have to have a shunt permanently, which means it’ll be replaced every so many years. If that goes well, he could be out of the hospital in a week or so. Maybe less. But he wouldn’t come home right away. He’ll spend an unknown amount of time in an inpatient physical therapy facility. It could be a week or some weeks, I think; my father insists it could be weeks or months and we’re getting sick of his pessismism. My mom will stay with him during that time. There aren’t a lot of facilities like that, aimed at children instead of adults.
I had a tough conversation with my mom on Friday. She asked a few questions about tumors, things she’d never bothered to find out. Then we moved on to the “how could this happen?” stuff.
On a personal note, my girlfriend is back from Texas today, so I shouldn’t be so lonely this week.
Yay for Tyler doing his therapy. Yay for Mom starting to come to terms with stuff she’d avoided. Yay for girlfriend to help Marley not be lonely And Yay for Marley for being such a good brother and son.
Tyler is lucky to have his whole family there pulling for him so strongly. And as someone who’s currently in the process of (much more minor) rehab from a knee replacement, if I can suggest a bit of frustration as a great motivator. It’s amazing how frustrating it can be to have others do things for you that you’re used to doing for yourself, and possibly even more frustrating is trying and seeing how much harder things can be. But counteracting the frustration is the terrific feeling of making progress with even small things.
So if you can, let Tyler try to do things himself first, and then any time you see any progress, however tiny, encourage him. It’s hard to see your own progress, but when enough other people tell you, after a while you start believing it may actually be happening.
Hang in there, we’re all pulling for your whole family!
Marley - Can we get an update?
StG
I meant to update a few days ago, but things got busy again. Tyler finally left the hospital Tuesday morning, and he’s now at the Burke rehab center. He was feeling much better that last week or so, and Dr. Sen was also buoyed by his recovery, which was very nice to see. It was obvious that he was going out this week, and on Sunday, when it was clear he was going to leave in the next day or two… the feeling is very hard to describe. It’s very freeing and we all feel a lot better.
Tyler is working hard at getting stronger, and my mother is staying up there with him. I’ll probably visit Saturday, and we might take the dog up with us. A bunch of our Allman Brothers Band friends have organized an American Cancer Society fundraiser, with much partying and jamming, in Tyler’s name. That’s going down a week from Saturday, and I need to practice. I’ve never had enough guts to get up and play at one of these things before, and it’d be ridiculous if I didn’t do it this time.
Wow, great news all around. Wish him continued luck and a speedy recovery.
Jim
I didn’t mean to let this thread lapse for this long, so here’s a quick update: Tyler has been rehabbing for several weeks and is definitely stronger. He can walk around and stand just fine with a cane, and is now using the wheelchair only for long trips. I’ve been up to Burke twice, and I’ll see him again this weekend. Today I was told he is coming home on April 21. No word on the timetable after that.
We did indeed take Maggie to see him a few weeks ago. I’m happy to say that she was reasonably good and was very excited to see him.
The Jam for the Cure went off on March 31, and although I didn’t play, it was a blast. Most of the Allman Brothers Band - Warren Haynes, Oteil Burbridge, Jaimoe, Marc Quinones, and Derek Trucks - signed Tyler’s bass. So did Derek’s wife, singer/guitarist Susan Tedeschi. The band’s Tour Mystic was interested in what was happening with Tyler and took the effort to get the bass to the band members who didn’t come to the party. (Derek, Susan and Oteil did come, and Derek spoke to me for a few minutes- we speak whenever I see him play, but he made a little bit of an effort to come to me, which I appreciated.) I don’t know how much money the Jam raised, but I’ve been seeing the band and going to these pre-show parties for 10 years, and this was certainly the largest event we’ve had. I won a basket of Godiva chocolates during the auction phase, so that became a gift for my girlfriend and my mother.
I also made a visit to Strawberry Fields with the girlfriend that day. I’ve been before; she hadn’t. But I’d never come with an instrument before, and that was special too.
Mark Messier also called Tyler the other day. I was very jealous. Tyler doesn’t like hockey, and I watched Mess lead the Rangers to the Cup in '94. 
Tyler is doing some schoolwork, including reading To Kill a Mockingbird. He’s not excited about it, I’m sure, but it’s a step toward normalcy.
This started before he went into the hospital but Tyler has become a big fan of Scrubs. It figures that he would turn to a comedy set in a hospital for relief during his time recovering from surgery. 