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.
Friday, January 29, 2010
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!Thursday, January 28, 2010
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!!!!!!!!!!!!!
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!!!!!!!!!!!!!
Wednesday, January 27, 2010
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.
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.
Sunday, January 24, 2010
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!
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!
Saturday, January 23, 2010
Thursday, January 21, 2010
Wednesday, January 20, 2010
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.
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.
Sunday, January 17, 2010
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!
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!
Thursday, January 14, 2010
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.
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.
Tuesday, January 12, 2010
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.
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.
Sunday, January 10, 2010
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!
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.
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)
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
Wendy
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