HAPPY BIRTHDAY DAVE!!!!

June 30--Has always been a special Day, as it is Daves Birthday!

Happy Birthday Dave!! Keep up all your hard work and Know that there are many people

100% behind you and Love You Very Much!! Today you have ALOT to celebrate!

And the next year will definately be better!!

Love, Amy

Home is where the heart is...

...and home is where Dave is. 

Sharon brought Dave home yesterday for the first time in 7 months.  A friend helped them out by transporting him by ambulance as Sharon does not yet have a van that can accommodate his wheel chair (it is on the list).  The move back went very smoothly and before long Dave was back in his own kitchen, with his own dogs and loving every minute of it.

As anxious as I was to call Sharon yesterday, I held off until tonight after I was sure Dave would be asleep and Sharon would have time to talk.  She is very positive and more confident than ever that this was the best move to make.  Both her and Dave are working on establishing a rhythm and routine for each day and after talking to her tonight I am positive that they will find their stride soon enough.  There have been some hiccups with the special lift that she uses to move him from the bed to the chair or from the chair to the couch (yes, he is sitting on his own couch again!), but it sounds like that will all be worked out within a coupe of days.

Since I feel as though Dave's home coming marks the end of one chapter and the beginning of the next, I decided it was time to change the look of the blog.  I picked the sunset background because after being at their house a few weeks back I realized that they have A LOT of pictures of sunsets, so they both must obviously love them.  Here's to you Sharon and Dave!

Great News!

All of the work that has been done on Dave and Sharon's home has all paid off!  The finishing touches were completed yesterday and today the house was evaluated to ensure that Dave could be brought back and be cared for comfortably and safely.  The house (and Sharon) passed with flying colors!!!!!! 

DAVE IS COMING HOME!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

I spoke to Sharon this evening and it looks like either Thursday afternoon or Friday is the day.  Although this is not the end of Dave and Sharon's struggle with this disease, it is definitely a huge milestone.  I think Dave has told Sharon, Matt, his family, my family and any one else who comes to visit him everyday that he wants to go home.  I am so very happy that finally he is going to get what he wants. 

so...

when's it gonna happen?! I've lain off calling Sharon. I know the delay comes from finishing the bathroom. I also know Dave DeBerdizzle has been doing A-1 (for DB's giggles now)"Qwahhhlity" work. I know the tile and grout and spackle needs time to set. I know.

but when?!? I know I'm being impatient but I just can't wait to hear the call: "Dave's home."

As much as everyone's put into visiting Dave and traveling to and from, it settled home with me this week talking to Sharon.

I said something regarding the fact that Dave hasn't seen home in five months.

She said, "No... more like seven months."

seven months?!!

Yes indeed, seven months.

The reason I bring this up is that one of the last times I visited Dave I thought he was being lethargic (well, lazy) and I called him out on it. He goes through a lot for therapy but sometimes slacks and asks to be put back in bed just after one PM.

As he was getting "resty" at one-ish that day I said, "You're always sleepy any more."

He said, "I won't be sleepy at home."

I know that the next time Sharon posts Dave will be right there next to her.

God bless them both and please keep the comments coming.

Your responses are soul-soothing.

home... it's where i wanna be...(ramp's done)

listen to more Talking Heads.

All I know right now is that Dave might be coming home this weekend. I'm writing to say,"thank you" to a few important people. Without Bryan, Mike, & Don of S&S construction(giggle) this would never have happened. Thank you guys so much. Special thanks to Gumble Bro.'s for the supplies. Their donation saved Dave & Sharon over five bills in expenses.

Thanks to Billy G.

Whereas his straight-shooting kept him from all the dirty work, his connections made all of this possible.

love you pop.

thank you B,

love you too.

Also, this was a busy weekend for everyone else!

Sharon's sister Wendy & her husband Scott and Dave's brother Bob made over 200' of chain-link fence appear as if over night!

Wendy is now registered as a dominatrix (kidding).

And now for Dave & Deb DeBerdizzle; I know you've been there every bit you can. I'm in awe as to how you've taken Dave in to your family. Whatever happens, I'm so glad to know it's you that has Sharon's behind through this.

As a small aside, Sharon's dad does a bit of remodeling.

This man has single-handedly renovated the first floor of Dave & Sharon's home.

I know Sharon would say," Thanks for bringing Dave home."

...and I know that would go out to everyone who helped.

Dave & Deb, Wendy & Scott, Bob, Bryan, Mike, Don, Bill G., Darren H., the Gumble Brothers.

A Wonderful Day to remember!

Yesterday was a beautiful day to remember! Not only did Dave's good friends George and Paige get married, Dave also got to attend the day with them! This was Dave's first day out other than, going out for Drs appt's. When going out for a Dr appt's Dave is transferred by an ambulance. Today with much going back and forth-a van is what was used for this transport as well as Dave sitting up in a wheel chair.


I was honored not only not only being able to attend this special Day, but I also got to spend a very special day with Dave. To be able to be an outsider looking in, it was wonderful to see the joy in Dave's face when he was 'SPRUNG' as Sharon put it! It was also special to see him greet friends that mean so much to him. Many times I was moved to tears to see Dave just be apart of the day. It was a mark of achievement. George and Paige are such good friends and missing this Day was NEVER an option!


The weather held off on the rain, that was unfortunately on its way, not only for the ceremony, and cocktail hour, but having it also hold off for Dave to actually be there for it. The 'boys' had to take the wheelchair stoppers off so that the wheelchair could easily move across the lawn. Which worked GREAT--I enjoyed handing them in to his nurse at the end of the day with a 'we took them off to move in the grass--but look the screws are right there to put them back on!' .


My job at the wedding was to take pictures for Dave, as he too is a picture person-his hands inspite of now being able to hold a fork and feed himself, just are still working towards gaining back his fine motor skills! Dave laughed at me when I said to him "Dave, see how much I Love you?! I charge most people to photograph a wedding!" He watched the wedding, yet, Boy was he on me at the same time! lol! "AMY-take pictures" he said to me, numerous times. These pictures I snapped on my cell phone, the others were on his camera.


Just as the sun came out perfectly, almost as a sign, only for the wedding ceremony, the rain held off till Sharon and I were just about back to the Nursing home. The timing on Sharon's end was perfect. Dave attended only the wedding and cocktail hour. As Sharon was thinking that it might be time to head back, Dave began to show us signs he was done. Even though he enjoyed the conversations with all AND the yummy egg rolls, his legs were beginning to hurt, and his body was exhausted from sitting and enduring a big day out. We loaded him up and on the way back is when the rain began. Sharon, had a hard time leaving Dave at his nursing home, because he SOOOO wanted to go back to the wedding too. I stayed behind with Dave, fed him, and helped his nurse getting his ready for his shower. As I took Daves shoes off, his nurse said that it was ok she could do it she knew I had a long ride home, to which I replied under my breath, "Dave is worth 5 more minutes to me!" and Dave added ever so softly "I love you Amy"


May 23, 2010 is truely a day to remember. A beautiful blessed day for George and Paige. A fantastic day of achievement for Dave. He wanted to be at this wedding and he now has proof that he really can do it. His journey however is not over and will still continue to be One day at a time. I didn't speak with Sharon, but I can almost bet today Dave was wiped. George and Paige, not only was your wedding day a day of your lives changing, it also marks Dave's and Sharon's lives changing too. In a few weeks Dave will be going home. And my heart is so happy for everyone!


I want to share a quick story with you all and Dave too! I showed my son Daniel this picture of me and Dave. I still smile as I remember his happy shout out "MOMMY! Uncle Dave is all better? That means he WILL be able to go to Long Beach Island with us!". You see Dave everyone is still praying and pulling for you--even the little people in your life who just love their Uncle Dave! The positive things like getting out for George and Paige's wedding, sharing a beautiful day with all your friends who love you so, your nieces and nephews helping you see postive when sometimes all you see is what you can see in front of you, Sharon encouraging you to "Keep that head up" and "straighten those arms"---THATS what will keep you motivated to keep getting better!! Keep seeing the positive Dave, everyday you are one step closer. And everyone is 100% behind you. Sharon, Keep up the hard work, and know how everyone who loves you and Dave, are behind you too and with you 100% of the way and are ready to help you with WHATEVER you guys need! Its a new chapter for you and Dave and we look forward to helping you write it and get through it!

To all, please keep the positve encouraging thoughts and messages coming! and Thanks to all who are helping getting the house ready for Dave to come home! It is appreciated by all.

My daughter is

my HERO. I never knew Sharon had such incredible strength. I have been in on this journey since the very beginning, what started out as a possible case of Lyme's disease, to maybe MS,then it seemed to take on a life of it's own. As the more common ailments were discussed then ruled out, thru the different hospitals, different doctors, the whole time watching Dave get worse & not having any answers, she has been a tower of strength for Dave. I've held her when she cried, seen her handle insurance problems & administrators, gotten called at 5:30 in the morning when he was moved to ICU with pneumonia. But every time she walked into Dave's room, she dried her eyes, put her chin up & never, ever let him see how worried she was. I'm so proud of her, anyone would be lucky to have her in their corner.



Now onto Dave, I haven't seen him in awhile, but he had a good report from the eye doctor, and this is huge, he held a utensil & raised it to his mouth 3 times before he tired out, TRUE PROGRESS!! His upper body seems to be coming back pretty well, lower body a little slower, but everyday seems to bring some positive progress. Everyone is busy trying to get the house ready for his return, which takes lots of money & hard work. The insurance says they won't pay for him to stay at Lake Aeriel, & the doctors won't sign his discharge unless the house is in order. Talk about being stuck between a rock & a hard place.



So PLEASE, PLEASE keep your encouraging posts coming to both Dave & Sharon, the response to Matt's last post was great & I know it helps them keep going.

And so...

... with the quickness I'll try to explain. Dave's insurance says, "You must go." So, home is the only option. I hope anyone reading this never has to actually understand what goes on with insurance companies and the care that you hope your loved ones get, but, probably you will at some point.

With ten-ish days left in skilled care, Sharon has been scrambling to prepare their house for a homecoming. Sharon's dad Dave has been dutifully renovating the first floor of the D Bizzle-DeBerdizzle residence to be handi-capable. Sharon needs a ramp built to her (& his) front porch, "durable equipment" (meaning lifts, beds, wheelchair... etc), & also General Support.

You may wonder, "General Support"?

Yes indeed. Your glad tidings always lift their spirits & make it possible to carry on. Without the constant feedback Dave probably wouldn't be in touch with half the people he hears from today.

If you read this & think your response isn't important, you're stupid. Respond in the "comments" section of this blog. Do it. Do it.

Dave, Sharon, & all can't wait to hear from everyone!!

quick update

So, a bit of brass tacks for those that follow. The fact of the matter is that it is hard to find time to do this properly. Staccato info to follow...

Dave has been spending anywhere between two to five hours a day in a wheelchair. This is amazing progress as the last time he was upright was @ Good Shepherd in December.

Dave hates this. Well, to be fair, he hates all of this. Deb commented that he ripped me up for badgering him about holding his head up. As much as Dave is still in there (& he is, believe me), this type of brain injury makes Dave's emotions front and center... if only for a flash. He apparently tore Amy up pretty well a week ago, Sharon once or twice this month, I caught two myself... I think we all know this is just part of the mending; you should too.

Temper tantrums are tempered with smiles & grins, should you despair. As fast as these storms crop up, they disappear with talk of all things normal. On Tuesday we walked Dave around the property for about a half an hour. I traded out his glasses for my shades (Dave would never go outside w/out them) until we got to the end of the walk. We ran across an employee's vehicle w/ a vanity plate on the front bumper. As I swapped glasses out, I told Dave that Sharon got a new car & motioned to the plate. It took about three seconds for him to focus, read, & then grin ear to ear @ her "new tag": 'crazy b!tch'.

Sharon's not opposed; she wants one for Christmas.

On that end, Sharon has been up nights trying figure out how to get Dave home. I get to talk to her pretty much every day and I can tell you the situation's a complicated one.

Your thoughts & prayers are so important... please post if you've the time.

Baby stepping....

Steps in the right direction

I saw Dave yesterday for the first time in two weeks, and he seems stronger every time I see him. He was inPT and complaining the whole time. His speech is getting better and his voice louder and stronger. He has a long road ahead of him, but whereas in the past it seemed to be two steps forward, four steps back, we seem to be going forward all the time, even if it's slower than we'd like. Keep up the good work Dave!!



He now seems interested in the blog & hearing all your well wishes, so please keep posting words of encouragement. Also Sharon does not have internet service at this facility, so anyone who sees her regularly, and has a printer, we would appreciate a printout of this site to read to Dave.



Matt and Darren were there yesterday, Dave got mad at Matt for browbeating him and really let him have it. It was great! A special thanks to all of Sharon & Dave's friends, Aunt Kathleen keep those cards coming!



Please keep your prayers & positive wishes coming, we all appreciate them.

Dave's in LA!!

So, on behalf of the blog originators (wendy, thanks; amy, we'll see you soon; & sharon: you are not a jinx... get over it.), the updating has fallen on me. I'm sure you'll be back in the ladies' capable keystrokes soon enough, but until then, you got me.

A bunch has happened since the last post. The reason no one has posted is because it's tough to type with your fingers crossed. Dave's track record of "one step up and two steps back" is noted, but he seems to be holding his own now (knock knock).

Dave's now in beautiful downtown LA!

That's Lake Ariel, to you and me. And yes, it is a "nursing" facility, but you need to understand that while Dave is so much better than he was two months ago, he cannot endure the three hours of physical therapy a day that Good Shepherd maintains. Also, this place has PT, Occupational Therapy, Speech Therapy (retarded, sez Dave), and an on-staff doctor.

Lemme 'splain. PT, OT, and ST meet with Dave for an hour apiece pretty much five days a week. Speech evaluates (speech, duh) but also swallow function as well. Dave has been eating three meals a day since he arrived at Brighten, although food is either soft or ground to be soft. Sharon told me that they are going to try solid meat (steak!?) soon.

The hole from Dave's trach is all but closed; his speech is coming back really well. Dave is being patient with us when we can't understand him, and he's more understandable daily.

Sorry this post isn't longer. The progress is "baby steps" at this point, but they are all stepping the right direction for now. Dave is more aware of life as he misses it and asks about you all from time to time. We will try to keep this as up-to-date as possible; please post comments when you can.

sorry about chocolate pudding. there is something as too much of a good thing.

wendy & amy: tell jinxy it's OK.

Chocolate Pudding!!

So I start writing this to everyone in a very emotional state. I just Got news from Sharon that Dave just passed his Barium Swallow test! This is a test that tells us if his swallowing muscles are working properly, so he can swallow food again, and protect his airway! This is the Best news EVER! Sharon and I have said to each other today, "Hes REALLY getting better!" saying and writing it brings such emotional happiness to my heart!

With giving everyone his Good news let me explain why I Titled this "Chocolate Pudding!!" I go in to see Dave every Monday-Tuesday-and Thursday, as well as on the weekends. This past week--beginning with the taste of Mountain Dew--he has been becoming obsessed with several things. When he gets a thought in his mind he sticks to it! A few of the things he has been going on about is his bladder, water, and now Chocolate pudding. We believe his bladder is having some sort of spasms, causing him to feel like he needs to urinate. He has a catheder so even though we explain this to him, he insists to us he needs to go pee. I think possibly its his bladder 'waking up' a true sign of him getting better. He lost his bladder control Back in December when he was in Good Shepard. And it wasnt so much the control it was really Daves body to release his urine.

WATER. On last Thursday I was visiting Dave, during speech Therapy. He was asking me for water. So Theresa his Speech Therapist gave him a pink swap soaked in ice water. Well! You would have thought Dave was given his favorite candy!! So Theresa allowed him 5 swabs an hour. lol! As soon as Dave sees us he says "WATER"!

CHOCOLATE PUDDING. On Friday Theresa began the swallowing tests for Dave. This consisted of chocoloate pudding and apple juice with thick it in it. The apple Juice also had a dye in it to tell if any was left in his throat. I am Happy to report that on Friday it all went down-no dye was remaining. Yesterday, Monday, Theresa did the same, and the same thing happened--all went down. So to wrap this story up Dave has made the connection between Theresa and Chocolate pudding! Today while I was there after I gave 2 of his water swabs, called Sharon (WHICH I am VERY HAPPY to say was one of his constant requests when Dave first was in the hospital back in Nov. He would ask me to call Sharon the second he saw me! THATS BACK too! lol!), we then went over his need to pee, and then he said to me "Go-get-Theresa". at that I asked him why? and the response I got was "Chocolate-pudding". Lol! So me being me-the do whatever he wants to make him feel better person , go look for Theresa. She was busy with another patient so I told Dave and then we sat and chatted. Which also for the first time in a long time was a great conversation! Dave kept up with me responding appropriately. As with all good things, my time for the day with Dave ended, and it was time to go to work. As I was leaving, Dave asked me again "Go-get-Theresa". So I told his nurse to let Theresa know, and this made Dave very Happy!

I Left Dave this morning very sad, yet very happy. He is truely coming back to us. One step at a time, slowly but surely! I am sad because with Dave getting better I was sad because that means another move for Dave, and once again it looks to be an unknown place. Daves Insurance has denied him going to an Acute Rehab facility, he has just about used up those allowed days. However he does have days available in a sub Acute Rehab/Skilled Nursing home. So that had me lost and sad, as with every move for Dave has left me. I think its a cross between the fear of the unknown and the fact that its hard for me to let someone else care for my loved ones (Sharon NOT included in that. I truely she has been the god send for us all-especially Dave, as well! I have known all along that Sharon looked after Dave the same way that I did. We make a team-Sharon! I love you too! XOXO!)

But Now as I type this, THIS is the best news of all! Dave is Really REALLY-REALLY on his way to getting better! With getting better, its only makes sense for him to get back to his LIFE! That includes moving to a place back up closer to his home. This will make Things SOOO much easier for Sharon. Less commute--easier for work and for their wonderful Dogs to ALL see Dave, as well as their close friends, this will still be a place easy for our Family to get to as well. See? its the first step for Dave to get his Life Back! Its like Water and Chocolate pudding!

AS far as I go Dave, Not to worry, I told you today, it doesnt matter where you go, I will FIND you! I am the knat you just cant get rid of! LOL! and will always be there 100% of the way! You Keep giving your 100% too!! I LOVE YOU!!!

Mountain Dew?

Who would have thought that Mountain Dew would become one of the most motivating items in Dave's life?  Sharon started the day yesterday experiencing the ultimate level of frustration.  Dr's were in to assess Dave for possible transfer to Good Shepard Rehabilitation Hospital.  This is HUGE!  By transferring him to a facility like that means that they feel that he can be rehabilitated and eventually come home.  At a rehab center he will get a minimum of 3 hours everyday of physical, occupational and speech therapy.  He has been doing very well in these areas the past couple of weeks and it was time to see if he could make the transition to a more intensive therapy regimen.  If they feel he would not make the transition then he would likely be transferred to a nursing facility.  Whereas a nursing facility would offer a small level of therapy it really is nothing compared to a rehab center.  Needless to say, Sharon was full of nerves hoping that this assessment went well.

Despite how well Dave had been doing with all the various therapists, yesterday he really wanted no parts of it!  He refused to respond or do the things they were asking him to do.  Sharon begged, pleaded and cried trying to get him to show them he could do this to no avail.  It was a moment of sheer frustration for her and for the therapists who have been working with him.  Dave was really being stubborn.  It is hard to know what he is thinking when this happens.  Everyone is positive that he understands what is going on and perhaps he thinks if they don't accept him at the rehab that they would just send him home?  I don't know but that is the only thing that seems to make some sense to me.  Apparently the entire assessment went this way except that at one point there was a loud crash in the hallway and Dave responded to it and fully lifted his head and turned toward it.  In that moment he showed them that he could do it and was just being stubborn!

Later on Sharon was sitting in his room with him and she was drinking a Mountain Dew.  Dave saw this and his eyes grew wide and he kept motioning that he wanted it.  Remember that Dave has had a feeding tube since early January.  He hasn't tasted anything in over 3 months!  He isn't even able to drink water due to the swallowing difficulties and has had to rely on a swab in the mouth to even give him some moisture.  Seeing his reaction Sharon used her finger to moisten his lips with it.  She said he thoroughly enjoyed even that small amount.  From that moment on, being tempted by Mountain Dew, he did EVERYTHING that he was asked to do and when Sharon arrived this morning, Mountain Dew was the very first thing he wanted.  If Mountain Dew holds that much power I wonder what he would do for a taste of beer???

In the end the transfer to Good Shepard Rehabilitation center was approved and tomorrow Dave will be transferred there.  This is a really big step in the right direction! 

To Dave:

Dave, I know moving is hard.  Not just physically but emotionally also.  We know that you want to come home in the worst way and there is nothing that Sharon and everyone else wants more.  As hard as it is to understand this move gets you sooooo much closer to that goal!  They are going to work you really hard and you are likely to getted really pissed off at all them and that is ok, but it is only through this intense therapy that you are going to be able to once again enjoy so many of the things that you have missed.  Petting your dogs, hanging out with friends and having a beer, giving Sharon a hug...the list is endless.  We all know you can do this.  Keep showing them the fighter that we have all come to realize you are and know that everytime you move a muscle or say a word you have your own personal pep squad cheering you on.  You may not see us but we are with you in spirit, day in and day out!!!! 

the smallest words means sooo much!!!!!!!!!

Hi everyone it is Sharon, sorry I haven't posted in awhile. Those really close to me know why I don't like to post. So I'm just giving a little update. Dave seems to be responding well to the steriods. He has been moved back to Good Shepherd Ltach, which is a good thing, no longer in ICU. This past week his therapist have started him on a speacking valve for his trach. Dave has been off of his ventilator for of a week. He still has the trach because of his secretions, it allows the respiratory therapist to go in and suction him, which is unpleasent, when he needs it. As inpleasent as this is, Dave does ask to be suctioned at times, so it does give him relief. Imagine having bronchitis all the time, this is how Dave feels right now. The speaking valve allows air to flow around his vocal cords allowing him to produce sound. The first time I told Dave that I love him after they had put this valve on him he responded with 'I love you too', I haven't heard him say that in almost two months. Each day he seems to be willing to try a little more at talking. Dave got so frustrated not being understood that he had stopped trying to comunicate. It is great having Dave try again to talk to us. But to be able to communicate again comes with it downs sides. Dave is now able to let us know when he is not happy or comfortable, but it is still hard to understand him, so it just kills me to know Dave is trying to let me know something I can't figure out. I know sometimes Dave is not comfortable but I can't figure out what is bothering him. Sometimes it is internal, sometimes it is physical. He has admitted to me that he is sad(he says because he misses me) and he is scared(I haven't figured out why yet) but at the same time when I'm there his spirits seem good! Dave needs everyone to continue praying and sending all of their postive energy and thoughts his way! He hasn't given up so no one else can yet either!!!!!!!!!

The difference a storm can make!

Today, I went with my brother Bob to see Dave. Keep in mind I try and make sure I am there as often as possible--everyday when allowed, even if only 1 hr or so. Due to the HUGE snow storm that just hit us, I havent been up to see Dave since Tuesday. He has now been moved to another side of the hospital, and continues to recieve ICU care. This is mostly because of his respiratory issues, which unfortunately, I believe has somethning to do with our entire family having poor general lung makeup. Once again, Dave had developed Pnemonia and needed the assistance of a ventilator. This continues to be a a cycle for Dave because he has a Trach. I really believe the more rest he gets he will get stronger and kick this cycle.

Today-I a very pleased to tell everyone, Dave looked amazing. And of course I would love to share some of the positve surprises that hapened during our visit!

*His room is locked in a highly traffic area in the hall, and he is seriously watching everything! He is in an ICU therefore has a wall of just windows-a view of the world so to speak!

*Dave was not on ventilator, and was breating 100% on his own

*Dave of course did his normal movement on command eg: when we ask him to smile, move his hands, wiggle his toes, stick out his tongue. However today, we saw Dave give us a smile on his own! Bob made one of his wonderfully funny cracks about how Daves nose hair was longer than his! And Dave gave Bob and I a half smile! We are pretty positive Dave would have given us the finger! To see Dave do these things independently is just so priceless, and means the world!

*I told Dave about my work yesterday, working in the Cafeteria at work, and he listened very intentively!

*Daves facial expressions are coming back! Those of you know how his expressions are just as priceless as his words! I watched today as Daves respiratory Therapist suctioned him out. To put it mildly--not a fun experience to watch or experience I am sure. When finished the Therapist appologized to Dave for adding to his discomfort, to which I added "Dave thought that to be wonderful!" as sarcstically as I could! If you were watching Dave he Gave the espression that sarcastically said "Yea! I thought that great! Lets do it again!"

*You can tell that Dave is aware and knows who you are

*He shakes his head no! As I as leaving, I told Dave I would probably see him on Monday and He shook his head no-very forcefully Lol! The reason I share this is because this is something Dave HAD been doing. When I said Goodbye he would Say to me--"Make sure you call first, I am not gonna be here! I am going home." I truely believe Dave was shaking his head no because he was telling me that again! I then told him it didnt matter where he was I would find him and see him on Monday! I am his personal stalker!

*He mouthed the word Sharon--TWICE. When I asked him if he was asking me where she was, he gave me the expression of "Yes".. Sharon was in the waiting Room--only 2 people allowed in at a time. Bob and I still werent 100% sure why the room down the hall had 4--but whatever! =)

*Dave was watching the weather on TV!

*I asked Dave to give me a kiss---and he has been softly blowing a kiss. Today his kiss made a pucker sound that could be heard acrossed the room! Told Sharon and he did the same for her too! =) With that, Sharon cued Dave to show me how he can lift his shoulders--You know he did it right?!

I am sure there were others and unfortunately I can not remember all, but I can tell you I was moved to tears. I hold off saying to all that hes better because , this is a good day, tommorrow he may not be so good! I think our recent Snow Storm gave Dave some time to sleep and heal, We were all snow bound so he didnt feel need to entertain, so to speak. We are still waiting on the results of Daves Brain Biopsy, but I can tell you his PET scan came back with no sign of Cancer.

Dave--I love you Brother! Keep up the good work! I look forward to what tommorrow will bring!
XOXO!

Scans, Cultures and Biopsy

It has been a week filled with all sorts of tests, scans, cultures and finally yesterday a brain biopsy.  On an MRI that was done a few days earlier, the Drs viewed something new for the first time.  There were 'signals' visible that indicated something was going on in Dave's brain that had not been visible before.  The primary neurologist working with Dave thought that these were viral in nature.  Yesterday they removed a very small piece of Dave's skull and inserted a needle into his temporal lobe in order to obtain a sample of brain tissue to run cultures on it.  Dave did very well through the procedure and is doing well now with only a small bandage indicating anything was done.  The tissue that was obtained will be sent for testing and cultures and it will likely take some time to get the results.

Dave's Drs have started to question the original diagnosis of Bickerstaff's Brain Stem Encephalitis because they would have expected to see more improvement by this point with BBE, but BBE is so rare and there is so little research on it that I am not sure if any of them really know anyway.  The big question mark with the BBE diagnosis is what prompted them to start testing aggressively again to see if they could find anything else.  I know that some may be thinking, oh no, now what...but really this doesn't necessarily need to be a bad thing.  I felt that way at first but then my husband said something that really made sense, he said it is like Dave has been fighting someone in a dark room for months now and someone just turned on the lights.  It is easier to fight something that you can see.  The appearance of these signals on the MRI at least show a direction to go in and hopefully that direction will lead to ultimately a more consistent diagnosis, treatment and recovery.

As soon as this MRI revealed these signals, a high dose steroid was added to the regimen of medications that Dave was receiving.  It appears that the steroid is having a positive effect.  He is moving his toes on command and there appears to be more muscle tone in his legs and arms.  His primary neurologist is very optimistic about the small signs of improvement that he has seen in the past week however Sharon is still very cautious.  Every time she has allowed herself to get hopeful at these small signs she has been absolutely devasted when he has a set-back so...she is remaining cautious.  Dave has also been fever free this past week and his other vital signs are good, so it looks like this second run of pneumonia was kept under control from early on.

As always thanks for the comments and keep them coming.  They are a constant source of encouragement and support.

Quick Update

I was not able to speak to Sharon today because our work schedules are opposite of each other but I was able to talk to my Mom who was at the hospital today with Sharon.  Dave has been moved back to Lehigh Valley - Cedar Crest hospital.  As I mentioned the other night Dave is having some more tests done this week and Cedar Crest is better equipped to perform them.  While he has been at Muhlenberg, the neurologist come from Cedar Crest so this move just gets him closer to those Drs who have been working with him.

It seems that Dave has gotten the attention of several neurologist now and my Mom reported that he had been seen by 5 different Drs while she was there.  Overall she said that he looked good and was responsive to them more than he has been the last several days.  She also said that when prompted he was able to wiggle his toes and stick out his tongue (Sharon prompted him to do this to our Mom!).  He does appear to have pneumonia again, but it does not seem as serious as the last time and he is breathing more on his more.  They have started him again on specific antibiotics to treat this, so hopefully it was caught very early.

I am sorry that I don't have more details right now, but as I get them I will try to keep everyone updated with what I can.

2/14/2010

It has been a while since I posted and I apologize for the delay.  Sometimes after a couple real positive days and posts it is difficult to log in and not be able to share again an equally positive post.  The first couple of days after Dave was transferred were good days however he did develop a fever again indicating that his body was still fighting off an infection.  Initially this really wore him out and some of the great progress that had been noted was not present.  However, yesterday Sharon did tell me that he seemed to be doing a little better again and thankfully he remains at the specialty hospital and not back in ICU!  Dave is a tremendous fighter as he has been showing us time and time again.

Throughout the week Dave has been undergoing some additional tests.  It seems his Drs are equally as frustrated with his slow progress and are looking for anything else that would help them to determine what treatments would be best.  This week they will continue to do some more testing and we will try to keep everyone posted.  Keep praying and thinking positive thoughts, it means so much to Sharon and Dave's family to know everyone is pulling for him.

More IvIg!!!!!!

Hi everyone it's Sharon I had to pop on to give everyone the latest update. Just got off the phone with Amy. She went to see Dave this morning before going to work. She got there in time to catch Daves therapy evaluations. It seems like Dave had a busy morning, Physcial therapy, occupational therapy, and speech therapy.

Some of you might be questioning "speech therapy, I thought Dave couldn't talk because of his trach?" speech is actually more involved then just speaking. The speech therapist is the one who evaluates Dave cognitively. This is done by asking Dave a series a quetions. Those of you who came to see Dave at Good shepherd and Johns Hopkins are probably chuckling right now because we are all aware of how much Dave likes speech. For those of you who don't know I'll let you in on the joke. Dave thinks speech is retarded, those are his exact words! This has actually been something that we, Dave's family, my family and Dave's friends , have gotten a laugh over through this whole process. Dave feels this way about speech because of the questions they ask. We have all tried explaining to Dave that they will stop asking the stupid questions when he starts answering them correctly to no avail. At times I have seen Dave completely shut down when speech has walked into the room, and refuse to answer any questions or speak to them at all. The funny part is that the speech therapist is usually a pretty, young woman with a bubbly personalitiy, who tries to conjole Dave into participating with no success. All the while you can tell that in his head Dave is ripping this person to shreds. LOL!

Today was different. Amy told me that Dave actually participated today, answering all the questions and reponding nicely. Dave can not talk to the point that sound comes out, but he does move his lips, so we are able to understand him somewhat. And he can answer yes and no questions. Amy said he did so well she almost cried, but she didn't because she knew Dave would yell at her. Hopefully his participation is a good sign.

The other good news is that one of Dave's neurologist stopped in to see him this morning, Dr. Varrato, he is one of the ones Dave likes. They are going to be starting Dave on another five day round of IvIg today or tomorrow! That makes all of us happy. One of our biggest concerns when leaving Johns Hopkins was being able to get Dave this therapy when he needed it. Also Johns Hopkins only did 2days of IvIg per course, and he got 2 courses. We were all curious about this since the normal course is 5 days.

Please everyone keep praying, and sending all of your positive energy Dave's way!!!! He's going to get through this!! And thank you everyone for your continued support, I couldn't ask for anymore then what you are doing for us!

Good Bye ICU

Great news, after a 17 day stay, Dave has officially been transferred out of ICU!  This afternoon, bed and all, Dave was moved across the main hospital to Good Shepherd Speciality Hosptial.  To say that Sharon is excited, positive, optimistic and relieved is putting it mildly.  Dave still has a very long way to go, but this is definitely a step in the right direction.  He is still hooked up to all the things that let someone know that he is ok or struggling.  Sharon was relieved that she could still walk into the room and see his vital signs clear as day as she has become quite the expert at reading and interpreting it all.  She said that his room was private, large and bright and Dave can see out of the window!  Seems like a small thing but right now it is HUGE for Dave.  She also mentioned that Dave was again sitting in a reclining chair today when she first arrived and although he doesn't like to be moved into it, he does seem quite comfortable once he is there.  Also, he is really trying communicate and Sharon actually said that she felt from a cognitive perspective he seems to be better now than he was back in the beginning of January when he was down in John Hopkins.  Down at John Hopkins the head neurologist had told me that Sharon was the best gauge in determining Dave's status, so if Sharon says she feels he is better than he was back in January, I'll take it!

Unlike in the ICU, Dave can now have personal items in his room.  Sharon brought in a bunch of photos of their life together and all their great family and friends.  I put the address below and his room number in case anyone was interested in sending him something.

Good Shepherd Speciality Hospital
at Lehigh Valley Hospital - Muhlenberg
2545 Schoenersville Rd
Bethlehem, PA  18017
Room 3007

Keep up the prayers and positive thoughts, we are on the right track!!

keeping everyone on their toes!

So Dave was suppose to move out of ICU last friday (1/29), he started running a fever again, so they decided to keep him in ICU over the weekend. Over the weekend he went off the vent from 11 am till 5 pm on friday and seem to do very well, the nurse and respiratory therapist claimed he looked the best that they had seen him. That night his left lung filled up again. His chest x-ray didn't look good saturday morning and he was still running a low fever. When chest x-ray doesn't look good that means a not so pleasent morning for Dave. The nurse and respiratory therapist wind up doing a lot of treatments and suctioning of the lungs on Dave. This is good for Dave because they can get a lot of secretions out of his lungs, but painful because it makes Dave cough which irriates his tracheotomy. Coughing is good because it helps strenghen Daves muscles, but bad because it creates more moisture around the site of the tracheotomy. The very moist enviroment of the tracheotomy slows down the healing of the skin around the trach, making the whole area sore. So Daves body is pretty much playing a game of catch 22 with itself. The fever held on through the weekend, and into monday. On Tuesday he fever disappeared, suprising the doctors. I think they were almost ready to start Dave back on antibotics. Now he is ready to move, that's what the doctors say. Dave has a different opinion.

Let me go back just a little bit. When I walked into Dave's room today I had a double take, Dave was sitting in a reclining chair!! And his lips were moving a mile a minute, unfortunally no sound was coming out (remember he does have a trach). It seems as good as Dave looked in the chair he had not been too happy about being moved into it. Amy claims she felt he had been trying to say quite a few f bombs. I feel bad because from the time I walked into his room it was obvious he was trying to tell me something. You can only gather so much information from yes or no questions. It has to be so frustrating for Dave not be able to communicate clearly. I would like to remind anyone who comes to visit Dave about this issue. Our usual "never at a lose for words" Dave can't express himself right now. But he hasn't given up trying, which can make it hard at times because he tries to talk and we try to guess what he is saying. By his expression most of the time I can only guess we are not guessing right. I was able to figure out though that Dave doesn't want to leave ICU. Over the last three months Dave has been in four hospitals and two rehabilitation facilities. Every time he gets comfortable with the staff around him it is time to move. He likes the people around him right now and he feels comfortable, I don't blame him! The nice thing about where he is going next is that the doctors will be the same. With that being said maybe the adjustment won't be so hard. He should be moving tomorrow, lets hope all goes well. Please keep sending all your positive energy, well wishes and prayers Dave's way

Not quite ready to leave ICU

I spoke with Sharon earlier today and got a mixed bag of news.  Earlier today Dave was running a fever and due to this they have decided to hold off on transferring him until Monday.  On Monday they will reasses and possible move him then.  They were able to get the fever down and all of his other vitals were good so Sharon was not overly concerned about this and the fact that he gets to stay in ICU is not a bad thing.  There he gets the absolute highest level of care and that is very reassuring to her.

On the flip side, a neurologist was in to see Dave who was familiar with his case from his stay at Lehigh Valley Cedar Crest. On his way out, after meeting with Sharon and checking Dave out he told them both not to worry.  It would take time and a lot of hard work and therapy but he felt Dave was going to recover from this!  This was the first time that a Dr was absolutely, hands down positive.  It is not that they have been negative, but rather non-committal.  The boost of encouragement and hope that this simple statement gives is inmeasurable.  We have all felt that Dave was going to be able to fight this and recover but to have that feeling validated by a medical professional goes a very long way.  We still need to take things one day at a time and Dave has a very long road ahead of him but as he proven to date, he is a fighter.

thumb in the mouth or not she still loves me!!!

A few pics to share from me!

Molson on his first visit to see Dave at Good Shepherd Rehab 12/09. This one of my favorite pictures of Dave and Sharon. it was such a beautiful special moment, so simple, so loving I snuck the picture without them knowing. XOXO

Look how well behaved they are! Can you name them?! =)

My visit to see Dave right before he went into St Lukes. Yes all 5 dogs are getting a treat!

Here we go again!!!!!!!!!!!!

Hi everyone it's Sharon. I thought maybe it was time for me to make a post. First of all let me say that Dave is doing okay and seems to have kicked the pneumonia, according to the doctors. Let me just say that for awhile now the doctors have been saying that I am the best judge on Dave's condition, because I seem the must tuned into how he is on a daily basis. I think he is still fighting the pneumonia a bit, I don't think it is completely resolved, but he is in very good care and it won't get out of hand again. Those of you who were there at Johns Hopkins know how hard it was for me and Dave's family to make a decision on where Dave should go from there. You also know that I had a hard time dealing with the options that were given to me. I felt that Dave needed more care then what was being offered as far as our options. In his own way Dave affirmed my fears! 104 fever and getting put in ICU because of respitory distress is definititly one way of letting us know "I need a higher level of care, skilled nursing just won't DO!!!!!" I have nothing against skilled nursing but it is not for someone under the age of 50!!!!! I might be biased, just my opinion.
Tomorrow Dave is getting moved into a LTach (long term acute care hospital). The long term is actually shorter then you think. For most people it is around a month. Since we all know Dave has never done anything by the book, or the way it is suppose to be done, we can only assume he might be there longer. This is not a bad thing! Dave needs very attentive care right now so we can stop taking a step forward and then two back. I feel very confident that Dave is finally being placed in a place that can handle all that he is going to throw at them. All of us know that Dave never does anything half-assed!!!!!!!!!!!!!!!!!!!! He's getting his money's worth, and giving them all a pop quiz on top of it. (YOUR GONNA EARN IT BABY)
For anyone who has doubts, Dave is still all there!!!!!!!!!!!
To all of his friends at Skytop:
Dave still knows who you all are!!!!!!!! I tell him everyday all the people from work who has asked about him, who is praying for him, and who wants to come see him when he is ready. He has not forgotten his extended family. He still knows all your names and where you work, regardless if you have been there for five years of fifteen. We all know Dave, and I think he would be willing to do inventory for next 365 days and get all the pop-ups you could give him, if he could just get back to normal life! Dave would like to extend a thank you to his staff! You really pulled it together when you had to and he is sorry he wasn't there, and will not be for a awhile, but he is proud of you all!!!!!!!!!!!!(He has been updated!!!!!!!!!!!)Bernice he feels for you, he got help at least from Jim(puddy), you have no one to ask! (we all try to help when we can)
So to everyone at Skytop, you are Dave's extended family and he thanks you all, for your prayers and well wishes,and he misses you all, never doubt that!!
The last couple of weeks have been tough, we moved from a point of trying to figure out what was wrong to, wow, is Dave going to get through this road bump? He is and he is going to get better! I ask Dave everyday if he feels he is going to get better, he still sticks to YES!!!!!!!!!!!!!!!!!!!!!!
So I would just like to extend a thank you from me and Dave! To all who have included Dave in their prayers and thought, to all who have given us a little something to make everything a little easier, and to all of our friends who have who have decided that making my life easier is their mission in life right know, THANK YOU!!!!!!!!!!!!!!!!!!!!!!!!I LOVE YOU ALL! I WILL NEVER FORGET!!!!!!!!!!!!!

1-27-10

Today is my first go at Blogging. Thank You Wendy for creating this blog, for people to go to to check in on things for Dave, for us to voice our thoughts about Dave, as well as our personal feelings about Dave, and for others to learn about Daves Condition. Its is very comforting to know Dave has another family besides ours who loves and cares for him just as much as we do.

Our brother Dave has been sick since the end of October. It took a great deal of time with many specialists to come up with final diagnosis of Bickerstaff’s Brainstem Encephalitis (BBE). This was found after trips to St. Luke’s, Lehigh Valley Cedar Crest and Johns Hopkins. Dave is one of five siblings, Bob, Rick, Hope, Amy then Dave. I have always believed that each one of us brings something to our family. Bob is our level head. He keeps us on the right page and dealing with the item at hand. Rick is our analytical one. He weighs good verses bad and what’s the BEST choice for all. As much as I would like to be the one who does this, Hope holds the power of finding out everything there is to know about, anything that is being thrown our way. My strength is being there, as a caregiver. I will be the one who will without a doubt be there for what ever you need. Dave's strength was always having the ability to balance out the five of us. He gets along with everyone and has the ability to not look at the negative but can focus ahead on the positive and that is why this has been so hard. It is difficult to motivate the usually "upbeat" one while he is fighting this illness, he can’t always comprehend what it is that is happening to him right now.

Yesterday morning, while visiting Dave, I witnessed Sharon making another tough decision for Dave-that none of us ever thought she would need to make. Today Dave is scheduled to have a Tracheotomy done. A tracheostomy is a surgically created opening in the neck leading directly to the trachea (the breathing tube). It is maintained open with a hollow tube. This way Dave can have the secretions/fluids that have built up in his lungs taken out-as his condition has left him too weak to remove it on his own. With this procedure Dave will have the ability to talk and breathe on his own, while healing. Another positive note with a trach is that one can also eat food.

With that being said, each day continues to be a struggle for Dave. Sharon continues to be there for him every day and, my brothers, sister and I will continue to be there for the both of them, along with Sharon’s family. Sharon is a Huge part of Daves life, that makes her a Huge part of our family and our lives too. It’s one day at a time for all of us. Each day brings us all new challenges that we all need to deal with on a fellow sibling level, a loving parental level, and also a soul-mate level. Both families are each others strength as well as Dave’s and Sharon’s.

Please know that even though each and everyday brings all of us new issues to deal with, it’s the hardest on Dave. Each morning I look into his eyes and I can see he’s scared, confused, angry, sick, and lost. His entire life he has done his own thing. He has let no one get him down and he has remained control of things that are important to him. Now he has to rely on other people 100% to care for his daily needs- bathing, feeding, things you and I take for granted. He also is at the mercy of a disorder that is so rare most of the doctors working with him have never even seen it before, let alone dealt with it. Everyday day Dave has to put faith in the medical field that they are doing their best to get him well again.

So as you read this, please take a moment and say a prayer .It means a lot to all of us the positive words all have been sending Dave’s way. It helps keep everyone going. I smile when I think of Sharon saying to Dave "Ok Dave, here’s the list!" and then she gives him all the well wishes she received for him. Believe me he is listening too! Positive thoughts and prayers will help Dave find strength and to keep on fighting.

6 days in ICU

It is Sunday night and Dave has been in ICU for 6 days now.  Much has happened in the past week and there have been ups and downs.  The hospital did cultures on his blood, sputum and urine and found he had 2 infections; a URI and pneumonia.  The good news is that they found no bacteria in his blood which would indicate sepsis.  Sepsis is an extremely serious condition and thankfully we do not need to add this to the list of things that Dave needs to fight.  By doing the cultures Dave's Drs have been able to identify exactly which bacteria are present and were subsequently able to get him on the exact type of antibiotics to fight the infections.  This has seemed to really help and the past few days he has been showing some improvement each day.

As I mentioned in my last post, Dave was put on a ventilator when he went into ICU.  This is essentially a tube, about the same diameter as a dime, that goes down his throat into his lungs.  As you all can imagine this is extremely uncomfortable for Dave and as a result they keep him heavily sedated to make him more comfortable.  Remarkably, Dave can breath on his own quite well but his lungs continue to produce secretions that Dave is unable to cough up.  They use the ventilator to go in and suction the secretions.  Each morning they back off of the sedation and see how his lungs handle it.  During this time Dave is awake and responsive and showing improvement each day.  I was lucky enough to be visiting Dave this morning during this time.  He was awake and recognized me right away.  He cannot talk because of the ventilator but he was trying his hardest to anyway.  He looked good, so much better than the last time I saw him.  When the Drs came in they said he had defintely improved since yesterday and it was decided that tomorrow Dave would be taken off of the ventilator!  This is a huge relief and will do so much towards making Dave more comfortable.  It is important to note that he is not out of the woods yet.  Once he is off the ventilator they will monitor him very closely to ensure that he is not having any respiratory difficulties and continue with the antibiotics.  At this point Dave will stay in ICU until the team of Drs, respiratory therapists and nurses there are confident that he is recovering from the pneumonia and are comfortable with him moving to a regular hosptial room.  There is more left to fight but from what I saw this morning Dave still has a lot of fight left in him.

Tomorrow is a big day.  Everyone continue to send prayers and happy thoughts to Dave and Sharon and I will let you all know as soon as I can how it goes without the ventilator.  Stay tuned...

Karen - there are actually 5 dogs!
Sharon - the pics are great but I think you need to find one with all 5 of them.
Dave - sounds like you need to get back to work...someone is a having a good time in your bar!

photos of DB

A lot has happened...

...in the past couple of days.  Monday night, Dave spiked a dangerously high fever and was rushed from Old Orchard to Lehigh Valley Muhlenberg Hospital.  He was admitted and they were able to initially get control over the fever however, overnight his oxygen level went down and they had trouble stabilizing his heart rate and blood pressure.  In the very early morning hours he was transferred to ICU and put on a ventilator.  Although a chest x-ray that was done when he first got to the hospital was clear, a second x-ray that was done yesterday morning showed that 1 lung was almost completely filled and he was diagnosed with pneumonia.

Several of us were at the hospital and although it was a long day with a lot of unknowns, Dave's condition did improve as the day went on.  By the end of the day yesterday he was breathing on his own a bit and his oxygen levels had improved significantly.  They were also able to stabilize his heart rate and blood pressure and the Drs were saying they were cautiously optimistic.  As most of us left for the day, Sharon was settling in for another all nighter at the hospital.  Matt came down to watch over both Dave and Sharon and Sharon was able to finally grab some sleep.

When I spoke to Sharon this morning she was really upbeat and feeling positive for the first time in days.  Dave's vitals signs were all good and had been stable thru the night.  He was breathing mostly on his own and had even opened his eyes and looked at Sharon. 

Although this set back is very serious it is important to keep in mind that this is independent of the BBE and does not change Dave's neurological condition.  We just need to put that aside right now and focus on Dave's recovery from pneumonia and then once he is doing better we can focus again on his neurological recovery.  Before this happened there were some small signs of improvement and we all need to stay positive and believe that once Dave beats the pneumonia he will be able to get right back to working with all the therapists and continuing on the journey of recovery.

Have I mentioned...

...how proud of my sister I am.  Growing up we all used to make fun of Sharon because she wouldn't even call and order a pizza, she was that shy!  She's come a long way.  Her days now are filled with discussions with hospital administrators, insurance company representatives, Dave's Drs and nurses...the list is endless and throughout out it all she still spends as much waking time as she can at Dave's side giving him 200% of her love and support!  My little sister is really amazing.  For anyone who may feel slighted that Sharon has not been able to call and keep them updated personally, please try to remember what she is going through.  We all have our own difficult lives with family, kids, and jobs and as hard as that seems at times it doesn't even begin to touch the enormity of what Sharon is dealing with everyday, all day long.  While still in Baltimore I had asked Sharon if she missed home.  She said, "No, I miss my life and my best friend".  I think that statement says it all.

By now I think you have all read Amy's comments about Dave being moved back to PA.  He is at Old Orchard, 4100 Freemansburg Ave., Easton, PA  18042.  As with any transition, sometimes it takes time to get used to new people, new schedules, etc.  Yesterday was Dave's first day there and Sharon said he slept for most of the day.  The day before was a long one for both Dave and Sharon.  Dave did great during the ride and that night however, it really wore him out.  The good news is that the chest congestion that he was experiencing seems to be getting better.  Sharon said that yesterday he hardly coughed at all and although he slept for most of the day, it was a good sound sleep, just the kind his body needs.

Dave, Danny and Katie wanted to say "Hi" and hope you are feeling better soon.  They told me that you will get better soon because, "he has to keep Aunt Sharon company and help her with all the dogs".  We all love you very much, Dave!  Continue to be strong!

A Good Day!

I am very happy to report that today was a GOOD day for Dave! He worked with both the Physical Therapist and the Ocupational Therapist and both commented on the improvement from their last session. He is moving his hands more and is really putting in a lot of effort to do the finger exercises, even when they are not in the room! This is so encouraging. It doesn't sound like much but it is these little milestones that we need to focus on. Most encouraging is that Dave is really fighting for this!

Our Mom is down there with Sharon for a couple of days and it sounds like this is just what Sharon needed. I caught them when they had just come back from dinner out and it is the most relaxed I have heard Sharon in weeks. Now this could be a result of some cocktails and wine at dinner, but I think Mom has a lot to do with it also. It sounds like Dave really responds well to Mom also. Apparently she was cracking some jokes that she knows Dave would find appealing and whereas Dave cannot laugh or respond verbally, I am told he definitely had a smirk and twinkle in his eye.

Sharon has read the blog to Dave. She admitted that this has been hard to do because everytime she starts to read she starts crying because, "it is just so touching!" She is overwhelmed with the love and support she finds here and it means so much to her.

I will leave you with the best news so far and that is that it looks like both Dave and Sharon will be headed back to PA in the next day or two. Amy and Sharon have been working hard at finding the right place and they have narrowed it down and Dave has been accepted to a couple of them. At this point it sounds like it is a matter of exactly which place it will be and working out the final details about transport. He has had some chest congestion so Sharon does want to speak to the Drs and ensure that this is not something to worry about, but as long as the Drs clear it he will be able to be transferred. I hope next time I am able to give everyone clearer details of exactly where and when this will happen.

3rd IViG is done!

I spoke to Sharon this evening after she left the hospital for the day. Dave completed his 3rd IViG treatment last night (it was given over 2 nights). The past 2 days he has been holding steady. Even though there weren't any significant improvements, there weren't any new issues either. So steady is good. A highlight for today was some improvement with the Physical Therapist. Dave was very responsive to them and was actually able to make a fist, which he hasn't been able to do for a while. Sharon says he worked really hard with them and she was proud and happy with this. Keep up the good work Dave!

They have also spoken to the hospital Social Worker and are investigating where in the PA/NJ area he could be transferred to. It is very important to find a facility that has some knowledge about Dave's condition and can provide the best type of therapy and care. Amy (Dave's sister) has been calling a lot of places and doing a lot of research and it sounds like they are making some headway in that area. Amy, this is so helpful to Sharon, thank you. We still do not know exactly when he will be transferred but hopefully this week it will be worked out and he can come back closer to his family and friends. I think Sharon could really stand to come back also and be in their home with their dogs! I know she misses them very much and shows Dave their pictures everyday.

Sharon has been able to get on line and read the blog. She is going to try to get on in the next couple of days and post an update for us. Keep adding comments as this is very uplifting for her to hear from everyone and she can share our words of encouragement with Dave.

Leaving Sharon in Baltimore

Leaving Sharon in Baltimore was one of the hardest things that I have ever done. Our entire family is extremely impressed with how strong she has been throughout this whole thing. Thank you from all of us to Dave's family, Matt, Katie, Paige, George and all their other great friends at Sky Top who are helping her get through this. While I was there Sharon shared some pretty great stories of how you have all helped her and I speak for my whole family when I say we are all very grateful for the love and support that all have shown.

When I left Dave was not having a great day. It was not a bad day either, kind of somewhere in between. He was less responsive than he had been the 3 days before and seemed to be really fatigued. This was disconcerting as both Sharon and I were really positive after speaking with the Drs the day before. It is important to keep remembering that there will be good days and bad days and that you really need to take it one day at a time.

When I spoke to Sharon again this morning she told me that the Drs had been in and they have decided to move forward with another IViG treatment rather than discharging him to a subacute care facility. Sharon thinks, and I agree, that this is good. Once he is released from a hospital it will be difficult to get him these treatments if they are needed and she still feels that he is not stable enough to be discharged even if it is to another facility. So, whereas yesterday we thought that she would be able come back up to PA towards the middle of next week, it now looks like that may not happen. This will be his 3rd IViG treatment so cross your fingers that 3rd times a charm!

John Hopkins Hospital

On December 30th, Dave was transferred to John Hopkins Hospital in Baltimore, Maryland. The decision to move Dave here was not an easy one. This is far away from where they live and makes visiting Dave very difficult for Sharon and Dave's family. However, it was really important to get a second opinion and John Hopkins is a leader in neurology in the US. So on that day, Dave travelled via ambulance down to Baltimore while Sharon and Dave's brother Bob followed in their cars. Dave's brother Rick came down the following day. When Dave was admitted he was having problems swallowing and he was running a fever. They feared that Dave had aspirated on something and this was causing the fever. He was given a high dose antibiotic and a naso-grastic tube was inserted. Until the swallowing issues resolved, Dave cannot receive any food or drink by mouth. For the first few days that Dave was at John Hopkins he was very sick, however the fever did break and he started showing some signs of improvement.

One of the first things that they did at John Hopkins was another spinal tap. Based on that they were able to see that protein and WBC levels in his spinal fluid had gone down, which is a really good sign that the plasmapheresis and IViG that was done at Lehigh Valley had worked however based on his symptoms he was actually worse than he was at LV. They quickly ordered another round of the IViG and confirmed the diagnosis of BBE. Again, confirmation of this diagnosis is good news. All research that you can find on the internet points to complete recovery or recovery with some risidual symptoms, recovery being the important point.

I was in Baltimore January 6th thru the 9th. I met Sharon, Matt and Katie the evening of the 6th after they had been at the hospital that day. They were all very positive as it had been a good day. Dave was communicating with them and answering questions as best he could. It is important to note that even though his speech and motor deficits are severe he understands what is going on and can follow your conversation. I was unsure what to expect the following day when Sharon and I went to the hospital. I relieved when we went in to see Dave that he looked good. His color was good and his eyes were clear. He did not recognize me at first but that is understandable as he doesn't see me that often. By the end of the day he knew it was me and he was able to respond to me when I asked him questions. On the second day of my visit, Dave had a more permanent PEG tube inserted for feeding and he was much the same as the day before. Sharon and I were able to talk at length with the Drs and learned that they really feel he is a good candidate for rehabilitation however felt that he needed subacute therapy rather than the acute therapy. We spoke to them about what Dave's body is doing to iteself and how to know when it stops so that recovery can begin. They were honest and said they do not know if that has occurred yet. They felt that Sharon is extremely in tune with Dave and that she is the best gauge of his progress without doing another invasive spinal tap.

Leading up to John Hopkins

To bring everyone up to this point I will try to summarize the last few months. It seems that everything started around labor day of 2009 when Dave had a sinus infection that resolved. A few weeks later in mid September he started feeling a tingling sensation in his hands and feet that progressed over the next few weeks to trouble walking, slurred speech, fatigue and double vision. On October 9th he was admitted to St. Lukes hospital in Allentown and underwent extensive testing. St. Lukes was not able to find a diagnosis and thought that this was likely caused by a viral infection and sent Dave home with instructions for outpatient physical therapy. At this point Dave was able to walk with help but was still experiencing the tingling senstions, visual problems and slurred speech. Over the next several weeks he went to PT however the therapists were not seeing an improvement and in fact told Sharon that he was getting worse.
On November 11th Dave was admitted to Lehigh Valley Cedar Crest also in Allentown. At the time that he was admitted he could barely walk even with help. His visual problems were getting worse and his speech was also getting worse. Testing at Lehigh Valley was even more extensive. Originally they thought perhaps this was Paraneoplastic syndrome but after having every cancer screen or scan performed they could not find any cancer that could cause this. They also extensively looked for antibodies in his blood and spinal fluid that would indicate Guillain-Barre Syndrome (GBS) or paraneoplastic syndrome and were unsuccessfull. Both of these conditions were ruled out and eventually Dave was diagnosed with Birkenstaff's Brainstem Encephalitis (BBE). The diagnosis of BBE was relatively good news as all the information that you can find on the internet suggest that full recovery is the norm. Lehigh Valley treated Dave with Plasmapherisis and Immunoglobulin therapy (IViG). Plasmapheresis is a procedure where the plasma is removed from the blood and replaced with hemoglobin, it essentially cleans the blood as the plasma is where all the bad antibodies that Dave's blood is producing is stored. This procedure was really rough on Dave and left him extremely fatigued. This was then followed with a course of IViG and initially seemed to help. There were signs that he was improving and it was thought that the combination of plasmapheresis and IViG had been enough to kind of jump start his immune system in the right direction and he was then released to Good Shepard Rehabilition Center to begin recovery.
Good Shepard admitted Dave to their acute rehabilition center where he would receive at least 3 hours of physical and occupational therapy a day. When Dave was admitted to Good Shepard he could not walk, sit up unaided and his speech was severely impaired. At first, the increased PT and OT was good as we all looked at it as the start to Dave getting his life back however the 3 hours of therapy a day proved to be too much for him. On December 9th, Good Shepard requested a second opinion of the BBE as they were not seeing any improvement in his condition. On December 30th, after a couple of really difficult weeks, Dave was transferred down to John Hopkins Hospital in Baltimore for that second opinion. It is important to note that BBE is so rare that Drs at Good Shepard had never treated anyone with this condition and really did not have a good understanding of what it was. We have sinced learned that Dave does not need/cannot tolerate Acute therapy (>3 hrs a day) but rather SubAcute therapy (<1 hr a day)

Dave Barry's Blog

This post has been created to help share Dave's progress as he battles Bickerstaff's Brainstem Encephalitis (BBE). I am Wendy, Sharon's sister, and just recently returned from a brief trip to Baltimore where Dave is currently at John Hopkins Hospital. Sharon is so very thankful to everyone who has been expressing concern and love for Dave and who continue to ask about his condition. She is really in awe of how many people love and care about both her and Dave. We thought this would be a good way to get updates out to everyone as Dave, Sharon and his family and friends fight this and will try to get them out as often as possible.

Wendy