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