Update on Bryan's Condition

Hi everyone!

This week Bryan has continued to show his incredible strength in therapy. Although it’s VERY hard and painful for him at times, when asked if he wants a break he often time says no. He has shown confusion, answering questions wrong or just not knowing the answers. But, in typical Bryan fashion there are goods with the not-so-goods. Along with his dedication in therapy he continues to prove that most of the time, he remembers the important things in his life; his children, his family, his friends, his favorite football and baseball teams. He asks if the Sharks won, and if the football game gets turned off while he’s sleeping, he wakes up. As we plan for Thanksgiving, we are well aware we have SO much to be thankful for.

Today we said goodbye to Dave’s brother John, who passed away November 3rd. He fought hard the past year after receiving a double lung transplant in October/2010. Bryan was very close to John, and John took it really hard when he found out what happened to Bryan. Bryan has not yet been told about his Uncle John or his friend Matt passing away and we hope to know when the time is right to tell him. It’s just not now. One thing we know for certain, is Bryan gained another guardian angel.
Our family has been there for us during the hardest times in our lives, and we are standing by them during theirs. Just like we all are standing by Bryan.

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It's update time. How do we top Bryan writing his name?? Well, for starters, he also wrote Tyler and Tabby's! This week Bryan has been working diligently with his therapists, even though it causes him pain at times. The therapists tell us that he works through the pain and has never said no. His range of motion is slowly but surely getting better but his left side is still a lot stronger then his right. He usually writes with his right hand, but he's now writing with his left because that arm is looser. His speech therapist is working on having him eat actual food, which he CAN do but he doesn't always seem to want to.

We've also been noticing more of a sense of humor coming through. The other night Bonnie was visiting and held the phone while Bryan talked with Erin. Erin was asking him questions and he would answer with, "Yeah." She said, "Are you just going to keep saying yeah?" He said, with a smile, "Yeah." We also heard from one of his therapists that she was asking him to bend his leg. He wasn't so she went bent down to do it and he said, "No, wait." She sat up, and bent down again and he said, "Wait." This happened about 5 times and she finally asked him what he was doing and he said, "Messing with you." Erin had asked Bry if he knew her name. He responded, "Miss Sweaty Pants." Bonnie made sure to thank him for the new nickname for Erin and Bryan smiled.

At this point, we are so happy to see him smile, joke, answer questions correctly, and interact with his children since we didn't know if we would see that again. It's those times that make the difficult times easier. Knowing the harder he tries, and fights through the pain, the stronger he will be. With all the ups, there are "downs" but we take them where we can. Though he smiles, it's not the same smile we know to be Bryan's. Though he jokes, the humor is different, though he interacts with his children, he isn't the dad they have known. We picked this song specifically for one sentence. "Part of where I'm going is knowing where I'm coming from." Nobody can say where he will be down the road, but one thing is for certain...he has come far, and we make sure to remind him of that every single day.

Happy Veteran's Day. To everyone who has served, or is serving, in our military: Thank you for all you do. God bless our troops.

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This picture speaks volumes and we are so proud of him!

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Since Bryan returned to rehab we have seen improvements. His memory, while often times off, is incredible for his type of injury. His answers are sometimes wrong, but the fact that they are right most of the time is amazing. Sometimes, we see a difference in his personality but other times, his old self shines through. While physical therapy and occupational therapy are very difficult for him and exhausts him, his determination is great to see. He can only do about 3 hours of PT and OT a day, spread out, but he goes through the motions and his therapists all report there’s definitely a change in his stiffness and his ability to move. He complains about a lot of pain, sometimes being 10 out of 10. Doctors say it’s probably due to his extra bone growth so they work around that pain cautiously. He’s also able to stay in his wheelchair longer now without getting tired so that means more trips outside, although, gasp…he seems to like the shade!!!
In speech therapy they have been working on reading (he reads great for the most part!) and basic math skills. 7 x 3? Yeah…he knew the answer!

Before, when we said his old personality comes through, we thought we would share some examples. One day, when his speech therapist was working with him, the TV was on and she noticed Bry wasn’t paying too much attention. So, she asked what he was watching. On the TV was a female news reporter and Bryan said, “Ohhh, she’s hot.” Yep. That’s our Bryan. We made a CD of the music from this site to play for him. The other day Home Sweet Home came on and he mouthed the words while moving his head to the beat. One day one of his nurses came in and said, “Heeeeyyy Bryan!!” Bry said, “Heeeeyyy, what’s goin’ on?” He then got the biggest smile we’ve seen to date (even the biggest smile is about a half smile, but still). The other night when Bonnie was there she was saying she was leaving and he said ok. He closed his eyes and about two seconds later opened them and said, “Why are you still there?” She said, “Because it’s only been a couple of seconds, geez,” and he said, “Oh.” Bonnie also asked if he wanted her to shave his head or if he wanted hair and he said, “Uuhhh, I want hair.”

We try and keep updates positive with all the good things going on with Bryan, however we don’t want to give a skewed impression of his recovery. Getting to even this point has been a very long process and “this point” still weighs heavy on our hearts as we see him have difficulty with even the easiest movements such as moving his arm. The doctors are very happy with how far his brain has come, but his body has yet to catch up. He now has kidney stones, extra bone growths, blood clots and is still very stiff. Bryan has made it this far by determination, power of prayers, amazing doctors and support from you all. We’ve made it this far with the love of each other, our family and friends, and of course, all of you. We have a great support system to lean on and couldn’t have made it these past 7 months without it. There’s a group, the Bryan Brigade. This video was made by a member to support Bryan and we just had to share it. With all of this support from everyone…how do we even say thank you?

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It’s been a crazy week that has again felt like months. After a few days in the rehab unit, Bryan was transferred to the trauma rehab unit because of a fever caused by possible infections. His physical therapist was still able to come in and work with him. Bryan responded well and was exhausted by the end of each day. While in the rehab trauma unit, his team started to lower the third anti-seizure medication Dilantin. His EEG report showed no seizures and his fever was gone, so he was able to go back to the rehab unit last night. We are hoping that by lowering the Dilantin it will help his confusion and his slow to no responses.
It’s been a very humbling and emotional experience for us to see how dependent Bryan is, while also learning to help take care of him and participate in his rehabilitation. He continues to prove how strong and determined he is to get through this, and that is amazing!
Tyler and Tabitha got to experience taking their dad to a patio outside in the sun. They were beyond happy and to hear them talk about it with the excitement in their voices was truly heartwarming.
For a 3rd update in a row, our song is from Queensryche. We find it ironic that since their visit with Bryan, their songs have been the perfect fit to each update. We couldn’t find a video showing the lyrics, so we have included both because some of the words are so powerful and fitting.



I want to be a busy man
I want to see a change in the future
I'm gonna make the best of what I have
I want to write for a magazine
I'm gonna be the best they've ever seen
I know I'll win if I give it all I can

And I won't let go, gotta make the grade
No, I won't let it go
To be the best man, the best man that I can

Back street hoop star you've got it good
You were the wonder of the crumbling neighborhood
Now taking bids on the next six digit plan
Showed me that my will survived
when tragedy that came into my life
giving me hope and the new start
that I have

And I won't let go, gotta make the grade
No, I won't let it go
To be the best man, the best man that I can

Step by step I dream the plan
From my chair to walking man
This constant dream is on my mind
Chase the light I see ahead
Luminate the path I tread
I live to be the best I can

Now I'm moving forward
And I'm never looking back
Straight ahead, focused on the big attack
On a roll and I'm never slowing down
I won't be torn between
The man in the chair
And the man that's in my dream
I'm going to melt the two men into one

And I won't let go, gotta make the grade I set
No, I won't let it go
To be the best man, the best man that I can
The best man that I can
The best man that I can

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After almost 5 months at San Francisco General Hospital, Bryan was moved to a long-term acute rehab facility Tuesday morning!! We have to say a HUGE thank you to AMR San Francisco, Judy, Max and Scott for taking the best care of Bryan and for taking care of us as well. The transition couldn’t possibly have been any smoother. We said our bittersweet goodbyes to the amazing people at SF General. Like in LA, we were sad to say goodbye to everyone from the Café employees, the janitors, the nurses, the Chaplains and the doctors. SFGH also brought us together with some great families. The Nelsons, McGoverns and the Minis…both their loved ones are in rehab as well.

After arriving at the rehab facility Bryan got settled in, his pictures got hung up and he got right to work. The physical therapist, speech therapist and the occupational therapist came in to do some work with him and to assess him.

While Bryan knows the answers to some questions he is asked, he also has moments of confusion and he answers personal questions incorrectly. This is a big move for Bryan; a step forward in terms of progress. We know that we all have a long road ahead of us. With all his progress, Bryan still has a lot of work to do, and he has a long way to go. As always, the outcome is unknown and that is very difficult. But we are very determined and excited to start this next chapter and to help Bryan in any possible way we can.

The song for this update is another from the band Queensryche, who visited Bryan in SF. A part of the song is our message to Bryan. “I will be watching over you. I am gonna help to see it through. I will protect you in the night. I am smiling next to you.”

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Happy October!

Hard to believe the 6 month mark just passed. The day we got that phone call on March 31st seems like almost an eternity. Bryan continues to show good progress and while we are so excited and grateful, we pray it continues.

An ultrasound showed that Bryan still has blood clots. While they haven’t gotten smaller, they also have not gotten bigger so that is good. The doctors are still working on getting the right amount of blood thinners to get the clots under control.
Bry’s trach was finally removed and the site has closed up and healed, which makes him much more comfortable. Bryan continues to talk with a stronger and clearer voice, but he gets very tired easily and when he doesn’t want to talk, he doesn’t.

Bryan had an exciting week. On Saturday, Bruce Bochy came to visit. He gave Bry his signed SF hat that he wore in. He spent about 45 minutes talking to him and telling him that he wanted him at Spring Training! As he was leaving, Bryan said to him, “Bye. I love you.” Mr. Bochy said I love you too!

On Sunday, Bryan’s friend arranged for one of Bryan’s all-time favorite bands to visit. Queensryche was playing in SF and came by before one of their shows. When they first got there and were outside his room gowning up, Bonnie said to Bryan to look out the doors; that Queensryche was right outside. He looked out and said, “They are all dressed up. I’m not dressed up.” We assured him he looked great and had to laugh because in true Bryan fashion, he was concerned about how he looked. When they walked in, Bryan got a small smile. Erin asked him if he knew who they were and Bryan said, “Queensryche. My favorite band.” The band stayed for about 45 minutes, asking questions and talking with Bryan. As they were leaving, Bryan actually asked them to dedicate a song to him. We later found out they dedicated our song choice for today’s update.

We love it when Bryan says things that are his own, as opposed to repeating things we say. Once, Erin and Bonnie told him that thousands of people were looking forward to him throwing out the first pitch next season. Bryan said, “I’m there.”

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It hasn’t even been a week since our last update, and a lot has happened for Bryan. The physical and occupational therapists are going to be seeing him 5 days a week now, since he is more responsive and getting stronger. On Friday, they had Bryan sitting on the side of the bed and he was able to support a lot of his weight. Being as responsive as he has been tires Bry out so they recommend giving him breaks of quiet from time to time. He’s been saying a lot but it’s still a few words at a time, not full conversations. We have tried to recall everything he’s said these past few days to share with you:
-He says hi and bye to people as they come and leave his room. Usually it’s with prompting of, “Bryan, can you say hi or bye”.
-We have made a video of him saying, “Hi mom, hi Erin. I love you. Bye” and blowing a kiss. Today, we made another one for Tyler and Tabby of him saying, “Hi Tyler, Hi Tabby. I love you. Bye” and blowing them a kiss.
-He is responsive when you ask him if he wants something, like the fan on.
-Our LA friend Brian was visiting and talking to Bry and Bonnie said, “Bry…he’s annoying, huh?” Brian said, “Bry, if I am annoying you, blink twice.” Bryan blinked twice! We started laughing and looked at Bryan and he had a small (yet so big) smile on his face. Obviously he still knows he’s funny.
-Today his nurse Eric was joking around and we said, “Bry, isn’t Eric funny?” He responded, “Eric is very funny.”
-Today, Ann was on her cell phone in his room (she isn’t supposed to be). Bryan was trying to say something and Bonnie told Ann that technically she shouldn’t be on the phone and Bry said, “She isn’t supposed to be on that.”
-One of the chaplain’s who regularly visits Bry, Fr. Bruce, came in and we said Bryan, it’s Fr. Bruce and asked him to say hi. He said, “Hi Fr. Bruce.”
-Erin and Bonnie were talking to him and mentioned the Great Hodge, his childhood superhero name. He said, “My superhero name”
-Today, Bonnie pointed to Erin and said, “Who is that?” and Bryan said, “Erin.” Erin pointed to Bonnie and asked who she was and he said, “Bonnie.” When pointing to Ann and asking who she was, he replied, “Mom.” Dave wasn’t there so we took down a picture and showed it to Bryan and asked who it was and he said, “Dad.”

On Friday Bryan said something that perfectly fit the moment, and really describes these past few days. We got the OK to take Bryan outside for the first time in almost 6 months. He was moved to a cardiac chair and we went out to a secluded patio. Bonnie asked Bryan how it felt to be outside. Bryan, sitting in the sun, with his eyes closed said, “It’s magical.”

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It has been a week now since Bryan got his shunt. The first couple of days we could see slight progress: he was a little more responsive and the Physical Therapists said he was gaining strength. One day he was able to move his left arm towards his body and away, which is one of range of motions moves we do.

On Monday he got the filter removed that was put in to catch any blood clots that may go to his lungs. On Wednesday Dr. Manley called to say they were taking Bryan down for a full body scan since one of his legs was larger then the other. The scan showed a large clot in his thigh, one in his abdomen and another in his shoulder. Since the filter was removed they need to keep an eye on the clots with ultrasounds and measuring to make sure they don’t get bigger and don’t break off. The Drs now need to figure out the need for blood thinners and possibly the filter permanently.

On Wednesday, we were also told that Bryan had his speaking valve on his trach and when the speech therapists asked his first and last name, he said them. The ST asked what his daughter’s name was and he said, “Tabby“. She asked what that was short for and he said, “Tabitha“. She then asked what his son’s name was and he said, “Tyler“.
Today, the Speech Therapist was working with him again and asked him what his birthday was. Bryan then said, “2/12/1969”. With the valve on, he told Erin he loved her, and, while Erin was videotaping it for Bonnie, he said, “Hi,“ and “Bonnie”, when asked to say it. Also, Dave was holding up pictures of Tyler and Tabitha and Bryan said, “I would like to see them.”
We are blown away with all of this. Literally one day we got some facial responses and the next, he’s talking. His voice is gravelly and you have to be close to hear him, but he is talking.
Bryan’s had many ups and downs, and though we see how far he has come, we try not to look too far back into these past 6 months, and we can’t look too far down the road so we focus on right now. We pray that the Drs can control the blood clots and they stay away from Bryan’s lungs. But right now, Bryan is more awake and more responsive then ever.

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Today was Bryan’s shunt surgery. After being at the hospital since 6:30am, Dr. Manley told Ann and Dave that the surgery went smooth and the CT scan came back looking good. They were finally able to see Bryan and his eyes were open. He looked great except…you have all come to know is very particular when it comes to his hair….well, they only shaved half his head for the surgery. We’ll have to hurry and fix that before he finds out.

All morning we have been comforted and reassured by emails and Facebook posts from supporters all over the world. Prayers being said, well-wishes, etc. We have said this before, and will continue to say it….we couldn’t have made it through this without all of you.

Before March 31st, we never truly realized just how short and precious life is. We only have one, so we must make the most of it and treasure each other.

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