Thursday June 4th, 2009: Medical Conference
Today was Will's medical conference with Dr. Brock Bowman. Dr. Bowman went over a general summary of Will's brain and spinal cord injuries. He also went over a few of Will's x-rays that were taken after his spinal fusion. There was not much information that was news to me; however he did throw a few statistics our way that were a bit of a reality check for Will. There is a 4-5% chance that Will will walk again (and I'm not talking just get up and go like many of us are able to do). Most people do see an improvement in function about 2-3 levels beyond their initial level of injury. Will is T6-T7 with an ASIA B score. (This is all medical jargon and ASIA is a classification score for spinal cord injuries. ASIA scores range from A (the "worst") to E ("normal"). To give you a quick reference point, Will's level of injury starts between his nipple line and belly button. I appreciate the ASIA classification system, but now it's time to move on and focus on what Will can do. Beyond the bowel & bladder function being compromised, so is sexual function. Fertility does become an issue with SCI, and is more of a problem for men vs. women. There is only a 10% that Will's "little swimmers" will be fertile. So that was it in a nutshell. They taped the entire conference and then gave us the tape so we can listen to it again or share it with other folks who would be interested in hearing it. The fun part of the day was our "family dinner" of Mellow Mushroom take out in Will's room. Y'all up North don't know about Mellow Mushroom :) It's damn good pizza! Tomorrow I will get "trained" with nursing to do Will's catheterizations so we can finally get a "push pass" and go "out" this weekend. Will is continuing to do most of his own IC's and is doing fine with them. Tonight his nurse was going to do some bowel program training with him- you can imagine how excited he was about that.
Thursday, June 4, 2009
Motorcycle Ride - Fundraising Opportunity
Please see below regarding a ride this weekend. They will donate some money to Will if people will ride this weekend.
"Touched By Angels" - Helping those in need. Motorcycle ride from Mashpee to P-town. June 7th, 11 m-3pm. Registration from 9-10:30 am ($20 per bike), kickstands up at 11 am. Start AND end at Dino's Sports Bar on Rt 151 Mashpee. Party starts at 3 pm at Dino's w/live entertainment, auction, and BBQ. Call 508-888-7977 for more info.
Please see below regarding a ride this weekend. They will donate some money to Will if people will ride this weekend.
"Touched By Angels" - Helping those in need. Motorcycle ride from Mashpee to P-town. June 7th, 11 m-3pm. Registration from 9-10:30 am ($20 per bike), kickstands up at 11 am. Start AND end at Dino's Sports Bar on Rt 151 Mashpee. Party starts at 3 pm at Dino's w/live entertainment, auction, and BBQ. Call 508-888-7977 for more info.
Wednesday, June 3, 2009
Wednesday June 3rd, 2009:
I have to take the focus off of Will for a few lines here. Today was wonderful for 2 reasons and 3 people. First of all, our folks arrived today. Our parents have given us nothing but unconditional love and support throughout our entire lifetime. Though this is a challenging time for all of us, I know that we would not be where we are today without them. I also want to say that today was extra special for me because today was the day 2 years ago that my husband Ty proposed to me. Ty has always been and continues to be my rock. Next month will be even more special when we celebrate our 1 year anniversary.
So today was a good day :) Will had his wheelchair seating clinic, which is where he got to pick out the type of chair he wants and he got to "customize it." He chose the Tilite Aero Z, and the frame color will be a matte deep blue ice. I encouraged him to choose whatever "upgrades" he liked and he chose some pretty sweet wheels. And I am a loser and forgot to take a picture. The chair takes a few weeks to order and arrive so he will continue to use the loaner chair that he is in. We also were given literature on some other medical equipment he will need, like a toilet seat and a shower chair. I was aggravated to hear that insurance will most likely not cover these items. It's SO frustrating. Even though he gets a certain amount of money per year for durable medical equipment (DME), the insurance company usually denies some stuff. What the heck are people supposed to do!? His PT said it's stupid, but the insurance losers say that everyone should just do a bed bath- yeah right- SO lame. So the toilet seat and shower chair total about $500. Awesome- the next battle will be trying to get them to cover his catheters. This is also a hassle- so I'm told. They expect you to re-use catheters- that is just gross. Speaking of catheters though, Will did his first IC today and he said it wasn't as bad as he thought it was going to be. He has yet to start to manage his own bowel program. His bowel program has changed and he no longer uses the Magic Bullet suppository. I know some of you may not want to read this, but it's reality folks. His bowel program now is just digital stimulation- yup- finger up the pooper. Fun times- not so much. Tomorrow is the medical conference.
I have to take the focus off of Will for a few lines here. Today was wonderful for 2 reasons and 3 people. First of all, our folks arrived today. Our parents have given us nothing but unconditional love and support throughout our entire lifetime. Though this is a challenging time for all of us, I know that we would not be where we are today without them. I also want to say that today was extra special for me because today was the day 2 years ago that my husband Ty proposed to me. Ty has always been and continues to be my rock. Next month will be even more special when we celebrate our 1 year anniversary.
So today was a good day :) Will had his wheelchair seating clinic, which is where he got to pick out the type of chair he wants and he got to "customize it." He chose the Tilite Aero Z, and the frame color will be a matte deep blue ice. I encouraged him to choose whatever "upgrades" he liked and he chose some pretty sweet wheels. And I am a loser and forgot to take a picture. The chair takes a few weeks to order and arrive so he will continue to use the loaner chair that he is in. We also were given literature on some other medical equipment he will need, like a toilet seat and a shower chair. I was aggravated to hear that insurance will most likely not cover these items. It's SO frustrating. Even though he gets a certain amount of money per year for durable medical equipment (DME), the insurance company usually denies some stuff. What the heck are people supposed to do!? His PT said it's stupid, but the insurance losers say that everyone should just do a bed bath- yeah right- SO lame. So the toilet seat and shower chair total about $500. Awesome- the next battle will be trying to get them to cover his catheters. This is also a hassle- so I'm told. They expect you to re-use catheters- that is just gross. Speaking of catheters though, Will did his first IC today and he said it wasn't as bad as he thought it was going to be. He has yet to start to manage his own bowel program. His bowel program has changed and he no longer uses the Magic Bullet suppository. I know some of you may not want to read this, but it's reality folks. His bowel program now is just digital stimulation- yup- finger up the pooper. Fun times- not so much. Tomorrow is the medical conference.
Tuesday, June 2, 2009
Fundraiser Info
Will's buddies have been working very hard and done a FABULOUS job putting together a fundraising event for Will. Will's friend, Mike Peltier, is the contact for the event. Below are the confirmed details of the event:
Name: Where there's a "Will" there's a Way
When: June 26th 6pm-11pm
Where: Chatham V.F.W 150 George Ryder Road, West Chatham, MA 02669 (adjacent to the airport)
Events: Live band "Total Strangers" - Pig Roast - T-shirts - Silent auction
Cost: $25 @ the door, $10 for kids 12 and under
All proceeds will go to the National Transplant Assistance Fund & National Catastrophic Injury Program in honor of Will. We are in the process of setting up the account. Donations are tax deductible. The NTAF is a non-profit organization. Visit http://www.transplantfund.org/ for more info about the program.
Also please feel free to contact myself or Mike for more info. emarchibald@yahoo.com or burtonseven61@hotmail.com
Will's buddies have been working very hard and done a FABULOUS job putting together a fundraising event for Will. Will's friend, Mike Peltier, is the contact for the event. Below are the confirmed details of the event:
Name: Where there's a "Will" there's a Way
When: June 26th 6pm-11pm
Where: Chatham V.F.W 150 George Ryder Road, West Chatham, MA 02669 (adjacent to the airport)
Events: Live band "Total Strangers" - Pig Roast - T-shirts - Silent auction
Cost: $25 @ the door, $10 for kids 12 and under
All proceeds will go to the National Transplant Assistance Fund & National Catastrophic Injury Program in honor of Will. We are in the process of setting up the account. Donations are tax deductible. The NTAF is a non-profit organization. Visit http://www.transplantfund.org/ for more info about the program.
Also please feel free to contact myself or Mike for more info. emarchibald@yahoo.com or burtonseven61@hotmail.com
Tuesday June 2nd, 2009
Will's neuro-opthamology appointment went well and Dr.Weiner was amazed at how awesome Will is doing considering his accident was a little over 3 weeks ago. He has no loss of peripheral vision, which is awesome (that will help him out when he gets evaluated for driving.) His vision in his left eye is a little off which is due to the brain injury and not the scratched,infected cornea. She said in about 90-95% of people their vision returns to normal; it just may take a few months. After we returned from his eye appointment, his new roommate had arrived. He is 21 years old and his parents said they are still not sure what is wrong with him.He either has Guillain Barre Syndrome (like Will's other roommate) or he has had a spinal cord stroke. He is still on the ventilator and pretty much has complete paralysis. I really felt for his parents because you could just read the amount of distress on their faces. This afternoon I went with Will to PT so I could get some pictures of him "standing up." He did ok for about 6 minutes, but then had an onset of orthostatic hypotension. He got very pale, sweaty, and nauseous and almost passed out. He didn't listen to his PT and had jacked himself up quicker in the machine than he should have. Blair is really great with him, and said, "Live & learn!"
Will's neuro-opthamology appointment went well and Dr.Weiner was amazed at how awesome Will is doing considering his accident was a little over 3 weeks ago. He has no loss of peripheral vision, which is awesome (that will help him out when he gets evaluated for driving.) His vision in his left eye is a little off which is due to the brain injury and not the scratched,infected cornea. She said in about 90-95% of people their vision returns to normal; it just may take a few months. After we returned from his eye appointment, his new roommate had arrived. He is 21 years old and his parents said they are still not sure what is wrong with him.He either has Guillain Barre Syndrome (like Will's other roommate) or he has had a spinal cord stroke. He is still on the ventilator and pretty much has complete paralysis. I really felt for his parents because you could just read the amount of distress on their faces. This afternoon I went with Will to PT so I could get some pictures of him "standing up." He did ok for about 6 minutes, but then had an onset of orthostatic hypotension. He got very pale, sweaty, and nauseous and almost passed out. He didn't listen to his PT and had jacked himself up quicker in the machine than he should have. Blair is really great with him, and said, "Live & learn!"
Monday, June 1, 2009
Monday June 1st, 2009
Steady day- Will had an hour of PT, speech, OT,neuropsych, and then an informational research session. I participated in PT this morning so I can get checked off with Will to get a "push pass." We did transfers from the chair to the bed, and then went over safety techniques if/when we have an "Oh shit!" moment (if Will loses his balance and is going to fall or go down during a transfer. I think we both did pretty darn well together. I also spent some time with him during OT becuase his Foley catheter should be out tonight or tomorrow, and then he will start to learn how to do an IC on himself and I also have to get checked off on doing IC's. Darcie went over how to do IC's when Will is out in the community. I will tell you that reality has not totally set in yet with Will- he has admitted this yesterday and today. He is just starting to realize that he will be going home with a wheelchair and having to manage his bladder & bowels in ways that he never had to before. Thursday is the medical conference and that may be a very hard day. The future is very unknown and no one can predict what, and if any function he will get back. Of course we all want to hope he will walk again and regain bladder & bowel function, but only time will tell. This is not something I personally have been dwelling on. For me, I am trying to live in the present and learn about what Will's present needs and rights are. Tomorrow he is getting another roommate- a young guy, 21 years old. So the room will be plenty full with the 3 guys in there. Tomorrow is his neuro-opthamology appointment and then Wednesday our folks arrive. This week will probably fly by.
Steady day- Will had an hour of PT, speech, OT,neuropsych, and then an informational research session. I participated in PT this morning so I can get checked off with Will to get a "push pass." We did transfers from the chair to the bed, and then went over safety techniques if/when we have an "Oh shit!" moment (if Will loses his balance and is going to fall or go down during a transfer. I think we both did pretty darn well together. I also spent some time with him during OT becuase his Foley catheter should be out tonight or tomorrow, and then he will start to learn how to do an IC on himself and I also have to get checked off on doing IC's. Darcie went over how to do IC's when Will is out in the community. I will tell you that reality has not totally set in yet with Will- he has admitted this yesterday and today. He is just starting to realize that he will be going home with a wheelchair and having to manage his bladder & bowels in ways that he never had to before. Thursday is the medical conference and that may be a very hard day. The future is very unknown and no one can predict what, and if any function he will get back. Of course we all want to hope he will walk again and regain bladder & bowel function, but only time will tell. This is not something I personally have been dwelling on. For me, I am trying to live in the present and learn about what Will's present needs and rights are. Tomorrow he is getting another roommate- a young guy, 21 years old. So the room will be plenty full with the 3 guys in there. Tomorrow is his neuro-opthamology appointment and then Wednesday our folks arrive. This week will probably fly by.
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