Good news today

John has had a really good day today. All the doctors making rounds today were all impressed with John's progress in different areas. His vitals look great. His lungs are very impressive and kidneys seem to be suddenly working a little better. The surgeons believe John's surgical wound is looking better and his bleeding has stopped. They also believe the Wegener's is "under control." John will only be getting the Prednisone; and will hopefully be reducing the amount he's receiving next week. This reduction should help the surgical and abdominal wounds heal that John has been battling.

This morning John had demanded to get out of bed to see out the window. So, the staff actually got him out of bed, set him in some type of supportive chair device and moved John to the window. Apparently, this effort has paid off in a major way for John's psyche. Since then, he's been amazingly coherent, and also seemed to have regained his sense of humor. John's positive attitude will help him fight and regain the strength he needs. This is a refreshing break.

Lastly, John will have surgery tomorrow. He'll be getting a new A-line in his neck and a new catheter at the same time. During these procedures, John will also be getting a filter inserted to help prevent the clots earlier discussed from reaching his lungs and heart.

So overall, a good report today - a high on the roller coaster ride of John's fight with Wegener's. I'm excited to see John tomorrow and this weekend. We'll bring some more familiar items from home to hang around him and his room.

More later from Charlottesville - Thanks for all your thoughts and prayers.

Unfortunately John's condition is not improving. We found out yesterday John has many blood clots throughout his body. When the doctors tried a blood thinner to help break the clots, John had heavy bleeding from his abdomen and they had to discontinue to treatment. They are fairly certain they know where the bleed is, however his current condition will not allow them to perform surgery to try to repair the bleed. John received a lot of platelets yesterday to counter the blood loss. They also feel that if John's health declines any further, they may not have any medical treatment to provide him at this time.

Everyone is hopeful he can find a way to climb out of this latest setback. Most of John's treatments are now on hold until his health can improve further. Please continue to hope for the best.

Thanks everyone.

Successful move to Charlottesville

Just got home from Charlottesville to see John. He was awake and alert today, still a little sleepy from the pain meds - But we were able to get him caught up on the NFL draft, fishing and the nurses that either passed by or visited his room. The staff at UVA are temporarily holding off on the Wegener's treatments in favor of doing everything possible to achieve as much progress and healing as possible in John's abdomen. He unfortunately has a lot of surgical trauma left from a couple weeks ago that Roanoke could not get under control.

Lisa is hopeful to talk to John's doctors tomorrow to better understand their plan of action and the timing of John's treatments. We're trying to pull a calendar together for making sure someone is with John each day. Lisa has two weeks of school left and then boards. So we'll need to be as flexible as possible for visiting John.

Lastly, I'll be adding information about a fund drive we've established in John's name. Donations can be made via credit card and/or PayPal, all done Online. As everyone can well imagine, John's condition and loss of his income is very difficult on the family. There are many ways to help, and obviously any donation would be very appreciated and helpful towards the family's recovery. As you also know, the weather is turning and yard & bake sale times are arriving - Believe it or not, these are Great opportunities for fund raisers. I encourage everyone to think about these opportunities - We all know people who are willing to help. Let's organize our communities and see what we can do.

THANKS EVERYONE! Plese keep the faith.

More later.

Insurance

Obviously John has not been moved yet. The insurance company has caused a questions, but had finally authorized the transfer to Johns-Hopkins. However, there still seems to be some confusion between J-H and the insurance company - hopefully this is just confusion and can be cleared up very soon.

More later.

John moving to Johns-Hopkins, Baltimore

Due to John's condition, treatment status and hospital resources, we've realized we need to move John to better facility. One with extensive resources and specialists who can better understand John's condition and treatment. Lisa worked extensively yesterday for a hospital or clinic that can better support John's needs and although there are only a handful of these places, we were able to get John into Johns-Hopkins in Baltimore. We realize this is quite a distance, but John should receive top-notch care and hopefully can receive the treatment he needs to get better.

We spent time with John last night. He was aware and alert that we were there but is not sure of the travel he is making. They were unable to transport him last night due to weather, but the transfer should be today or very soon. They understand his condition and are anxious to get him into their facility.

We should be traveling to Baltimore this weekend to see him and will work out a schedule to make sure someone is there with him as much as possible.

We'd like to thank everyone for their thoughts and prayers and to all those who have volunteered their time and kindness towards helping with the kids. The family will definitely need this continued support moving forward. Also, so you know, Lisa is two weeks away from graduating nursing school! We'll continue to support her so that she can finish up this great and much needed venture - I know this is a very difficult time to try to stay focused with school, but so close to completion of a life-changing venture is very important for the lives of the entire family.

Please continue to keep John and Lisa in your thoughts and prayers. Thanks everyone. More later.

John is unfortunately not progressing as well as we had hoped. We had a setback late last week with some post-surgery bleeding. At this point, the doctors and staff do not believe John is healthy enough to withstand another surgery right now. So, he is fairly sedated due to a large amount of pain and discomfort. As noted yesterday, we're still in a wait-and-see cycle for now. John is however, being monitored very closely to ensure his blood count does not drop too low. His nurses are certain they are "on top of it" and will catch any change. We can only hope that he regains some strength so they can repair the internal bleed, bowel tissue fusion as well as the surgical wound itself which had opened late yesterday.

More later. Thanks everyone.

John has been somewhat stable lately. Last week went very well as John was awake and alert most of the time. He has been getting a lot better communicating and using his trache to his advantage. And we're all probably getting better at understanding him too.

Unfortunately, John's doctors are not 100% convinced he's on the right track towards recovery. Friday, he had another kidney biopsy which did confirm the Wegener's disease - which some had questioned.

The doctors are supposed to be meeting early this week to discuss next steps and plans in John's treatments. Lisa is hopeful to be involved in those discussions very soon. As for his status right now, John has some lingering problems with the wound from last week's surgery - it simply isn't healing like it should and the doctors believe it's due to the Wegener's treatments, thus the reason for them to regroup and discuss the treatments in more detail, possibly suggesting alternatives in his care. So for now, its (again) a wait-and-see process. John remains breathing on his own without the respirator and is also receiving regular physical therapy visits - which he looks forward to.

Hopefully we'll know more later today or tomorrow. Thanks everyone.

A corner turned?

Hello! Quick post tonight... It turns out that John receives 'regular' blood work, which we all know, but we were never quite sure of every test the hospital staff was conducting. Well April 8th, John's blood work returned from the lab with results from several tests - one of these is for antibodies related to the wegener's disease. And those results were negative for wegener's. If this is for real, then John has certainly made a turn for the best. This could mean that john is in remission and although still very sick, can begin an aggressive (as much as possible) treatment strengthen enough to leave the hospital - at least the ICU and work more on physical and speech therapy.

Next up: John will have a kidney biopsy tomorrow morning. The biopsy will (hopefully) confirm the diagnosis of the blood work and next steps. He is starting physical therapy to help regain strength and mobility in his arms and legs.

There's still a long way to go. But this is very good news.

Thanks again everyone! As always, please continue to keep John in our thoughts and prayers. We've got a lot of work ahead!

Happy Easter!!

John was very alert this weekend. He is completely removed from the ventilator and breathing on his own, he's only helped by O2, but he's doing all the work ;-)

The latest surgery last week seems to have done the trick. He's performing quite well. We are all still waiting for results from the kidney biopsy, but we can report that there is "some" kidney function and he was not given dialysis treatments in a couple days. I believe they will continue to closely monitor his kidney function to help them make a call on giving him dialysis treatments. But so far, so good.

John was also in pretty good spirits this weekend. Yesterday, Sunday, he was looking the best I've seen him look in a long time. His swelling is down and his skin color looks very good. Since getting his trache, he's been aggressively trying talk. As frustrating as it is lip reading (and his frustrations when we cannot understand ;-), I think we're all getting better at this method of communication. He's been receiving visits from speech therapy as well, they are working with him to teach him best practices on talking with the trache tube in.

Hopefully, I'll be able to give John a haircut and shave this week - He really needs and wants it. He greatly appreciated and smiled profoundly while we read some of the many Easter cards he received yesterday.

I know I'm forgetting something... Perhaps Lisa can remind me of what else I have forgotten. As usual, please continue to think of John and support him in your thoughts and prayers. He honestly seems to be winning each challenge they and this disease can throw at him.

Keep fighting John - You're me best friend!

More later. Cheers, Bob

Good, quick news

John was completely removed from the ventilator today for a couple hours. He did well breathing on his own. Even though it was a "test," everyone thought it was a really good step in the right direction.

Tomorrow, John will have surgery to remove his multi-med line from the right side of his neck and move it to the left side. He'll need this for several reasons, but it was time to remove it since its been in for several weeks. He will also get a new catheter for the dialysis machine at the same time tomorrow.

All and all, he's doing pretty well. Again, any visitors will need to wear the infectious disease garb (mask, gown, etc.) because of his new meds, we can't take any risks of someone carrying anything into his room.

All for now. Thanks everyone!

THANK YOU!

I want to thank all of our family and friends who are concerned for John and praying for his recovery. All of your prayers, cards, phone calls, and hospital visits have meant so much to us. Everyday I let John know that all of you are praying for him. When he can, he always smiles when I tell him about someone calling or asking about him. I know he is grateful! It brings tears to his eyes!

Thanks to our NRV Elite basketball team and our Christiansburg Crushers baseball team for your prayers and being there for our family. We are so happy to be a part of these teams! I pray John will be able to see some baseball this season!

Thank you Bob, Kathy, Mom, Dad, Tommy,Judy, and Laurie for supporting me and the kids during this very difficult time. We love all of you and I don't know what we would do if you all were not there. We are so thankful to have you in our lives.



God Bless You,

Lisa

Steady as he goes

Sorry I haven't posted in a couple days. John is doing "well." We had a couple issues earlier this week with how he was looking and the attitude (some of) the staff had about John's prognosis. They also had several issues with the dialysis machine this week and an infection. But the past 2 days we think he's made some good strides in improvement.

Yesterday, Wednesday, they restarted his treatment with a new dialysis machine and also started John on a new medicine for the Wegener's - although this medicine will cause his white count to seriously drop, so all visitors will need to suit up with mask and gown before entering. We'll need to be very careful not to bring any virus of any kind into his environment.

John also got a trache tube inserted yesterday. The good news is his ventilator is on the lowest setting possible - which means he is breathing on his own. They'll need to keep the vent just in case he needs any procedures that require him to be on it. The trache, which replaces the tune in his mouth, should make him much more comfortable.

Last night I got the biggest smile from John. I went into his room and he opened his eyes real wide and had the biggest smile. Once he fell asleep just before we left for the night, Lisa, the kids and I left him some gifts hanging from the ceiling... 2 stuffed animals - a Hokie bird and his favorite, "Deputy Dog." I know the nurses will probably take them down, but I hope he could get a chuckle before they did.

Anyway, we're hopeful that the infection clears and some skin irritations clear up as well - they have caused him some pain and if he can get past that, hopefully he can get off some of the pain medicine and be able to communicate a little better - he's pretty sedated due to the pain medicine. More later! Thanks Everyone!

no problems through the weekend

John remained stable through the weekend. His O2 is looking good and blood pressure has been maintaining. The vent has been lowered to 40% so he's actually breathing more on his own. He's still in and out of sleep since surgery, but when awake he is able to communicate with hospital staff and family.

Please continue to wish John the best - we're hopeful he can remain strong and continue to fight through. Thanks everyone.

Surgery went well

A little late posting this... John's surgery last night went well and he is resting today. The family was able to see him for a few minutes late last night when he arrived back in his ICU room. Vitals look good and blood pressure is strong. As the surgeon told us last night, we're obviously back to a wait-and-see period to see John's reaction and recovery from the surgery.

More later... Hopefully we'll get some good news today as the staff checks in on John throughout the day.

Heading to surgery

OK, we're finally heading into surgery. John has been given and has lost a significant amount of blood from last night through today. The wait to get a CT scan complete to find the internal bleeding has apparently been caused by low blood pressure throughout the day. They have been unable to get John stable enough to transport him to a CT machine.

Please continue thinking of John as he heads back into surgery for the second time this week. More later as I have the info...

Possible surgery today

John unfortunately had a rough night. He had to be given additional blood because it is believed he's got another bleed somewhere in his body. The hospital is doing everything they can to locate it, but they believe they are headed for surgery today to locate and hopefully fix the problem.

I'll post something here when I have more information.

Hang in there, I am sure John will continue fighting through this and back on the road to recovery.

Happy April !

Even with Monday night's surgery, John was awake and alert yesterday. The family and hospital staff all astounded with his communication and knowledge with who was in and out of the room. John remains in stable condition as his caretakers watch closely how he recovers from surgery and abdominal infections.

We'll take these signs from yesterday as very good and continue to help John communicate and work hard to get back into a more functioning role. He'll receive dialysis and chemo treatments today so that may have some affect on how well he can tolerate our company and follow commands. It's simply a wait and see process for now.

So let's all continue to wish John the best in his recovery. He's a strong person.