tag:blogger.com,1999:blog-82124013660123928382026-08-29T18:13:23.934-04:00In loving memory...theoutsyder83http://www.blogger.com/profile/06498206412285063607noreply@blogger.comBlogger70125tag:blogger.com,1999:blog-8212401366012392838.post-63129945152969148702009-03-30T02:43:00.003-04:002009-03-30T03:09:16.596-04:00

I just wanted to share a few memories I have growing up with my twin sister, Jenni.Growing up as a twin was awesome. I always had someone to play with, someone to argue with, and someone to tell my deepest, darkest secrets.As much as Jenni and I were alike, we were that much different. She was the smart on...me not so much...I was more outgoing, Jenni, the quiet type....she was left hand, me

Judihttp://www.blogger.com/profile/12591457064663023590noreply@blogger.com10tag:blogger.com,1999:blog-8212401366012392838.post-39125908279912769782009-03-27T16:00:00.038-04:002009-05-02T08:42:32.674-04:00

Jenni will never be forgotten. Her faith, love, and inspiration will remain with us forever. However, it is an unfortunate truth that memories do fade with time. To celebrate all of the best times we had with Jenni and to help hold on to those memories, I want to share some of the fondest memories I have of Jenni. I'll add to this list over time... there just isn't any way to list everything at

theoutsyder83http://www.blogger.com/profile/06498206412285063607noreply@blogger.com26tag:blogger.com,1999:blog-8212401366012392838.post-29840274476495328232009-03-26T15:44:00.001-04:002009-04-03T15:48:43.926-04:00

I mentioned a while back that I intended to create a tutorial showing others how to create a blog like this one. That project has begun, and you can find it at http://jennibuggtutorial.blogspot.com. It will take a while to explain each step in detail, but the basics are online at least. I'm backdating this post so that the memories posts will remain at the top of the page. Those are the most

theoutsyder83http://www.blogger.com/profile/06498206412285063607noreply@blogger.com0tag:blogger.com,1999:blog-8212401366012392838.post-23422871659627924852009-03-25T15:00:00.001-04:002009-03-25T15:13:25.052-04:00

We now have arrangements for the receiving friends and funeral. Both will be in Rockingham, NC (Jenni's hometown). Receiving Friends 5:00 pm to 8:00 pm on Thursday, March 26th Carter Funeral Home 705 South Caroline Street Rockingham, NC 28379 Funeral 4:00 pm on Friday, March 27th Beverly Hills Baptist Church 110 Kimberly Street Rockingham, NC 28379

theoutsyder83http://www.blogger.com/profile/06498206412285063607noreply@blogger.com7tag:blogger.com,1999:blog-8212401366012392838.post-13815796761022844882009-03-25T14:30:00.004-04:002009-03-27T10:36:19.987-04:00

There will be a few more posts, but not many. I don't have the time or energy to write them yet, but once they are finished, I am finished. Some people have expressed interest in continuing to follow me, but that shouldn't be done here. I can't speak for Judi or Layne or my mom, but I want this site to remain focused entirely on Jenni. I will not remove this site, but I doubt I will post anymore

theoutsyder83http://www.blogger.com/profile/06498206412285063607noreply@blogger.com2tag:blogger.com,1999:blog-8212401366012392838.post-54790056796052033272009-03-24T09:44:00.004-04:002009-03-24T12:45:29.858-04:00

As I write through tears, I know that my words will in no way express all that I want to say or all that I feel. I have many "thank you's" to express and the first is to Jenni."Thanks for being the best daughter-in-law ever". I am so thankful for all the fun times that I had with Jenni...visiting Josh and Jenni at Pembroke, visiting at their house in Rockingham, and celebrating their new home in

Debbiehttp://www.blogger.com/profile/06360062496304253823noreply@blogger.com24tag:blogger.com,1999:blog-8212401366012392838.post-45300230877897907882009-03-23T21:18:00.001-04:002009-03-23T21:20:06.474-04:00

Just a few moments after 9:00 Jenni passed. She went peacefully, surrounded by family and friends. Grace and PeaceLayne

Laynehttp://www.blogger.com/profile/00769138077351298027noreply@blogger.com138tag:blogger.com,1999:blog-8212401366012392838.post-90378284623607116162009-03-23T15:23:00.002-04:002009-03-23T15:35:50.868-04:00

We just had a very sad conversation with Jenn's Docs. Jenni's condition continues to deteriorate. They are out of treatment options. Factor VII given through the lungs was ruled out because the doctors believe it would cause a very painful passing and not help at all. Therefore, tonight when all of the family can be gathered, we will discontinue the extraordinary means that we have been using

Laynehttp://www.blogger.com/profile/00769138077351298027noreply@blogger.com92tag:blogger.com,1999:blog-8212401366012392838.post-68324997729373276522009-03-23T10:08:00.000-04:002009-03-23T10:08:20.702-04:00

I don't have any news yet this morning except that last night was uneventful and that Jenni tolerated the x-ray this morning at around 5 AM (which they have had to skip a few times due to her fragility). Jenni now has 98 followers, 220 people signed up for email updates, and hits from 48 states/31 countries. I am still amazed at how this little project has grown. I am still amazed at how many

theoutsyder83http://www.blogger.com/profile/06498206412285063607noreply@blogger.com22tag:blogger.com,1999:blog-8212401366012392838.post-3293952531067716782009-03-22T17:01:00.000-04:002009-03-22T17:01:34.572-04:00

Jenni's lungs seem to be worse today. Her oxygen is up to 60% and she had to be given extra sedation because she is struggling with the ventilator. I asked the doctors to make a decision on whether or not they are willing to do the experimental procedure, and the doctor returned a few hours later without the answers I was really hoping to get. She explained to me that although Jenni's lungs are

theoutsyder83http://www.blogger.com/profile/06498206412285063607noreply@blogger.com42tag:blogger.com,1999:blog-8212401366012392838.post-7005569894331454112009-03-22T13:08:00.004-04:002009-03-22T13:42:11.587-04:00

Jenni's situation has deteriorated from last night. They just had to up her oxygen on the vent to 60% she continues to work against the machine, a sign of rigidity in her lungs. Her level on the vent is still at 250, no change.They did not take an x-ray this am. When they gave her a bath her pulse fell, but it came back on its own.Ordinarily the word stable is a good thing, not now. We have

Laynehttp://www.blogger.com/profile/00769138077351298027noreply@blogger.com22tag:blogger.com,1999:blog-8212401366012392838.post-13254770468124033282009-03-21T14:46:00.002-04:002009-03-21T14:59:55.017-04:00

As we have gotten to visit with Jenni today she has opened her eyes some. She has been able to communicate with us by nodding her head. She was able to turn toward Josh's Mom when she spoke to her today. It is good to see her eyes. This may be due to reducing her sedation a little. When she is moved she still has issues with her heart rate dropping. This has been an issue for several days.

Laynehttp://www.blogger.com/profile/00769138077351298027noreply@blogger.com20tag:blogger.com,1999:blog-8212401366012392838.post-53451707170529020252009-03-21T11:55:00.007-04:002009-03-21T16:54:38.497-04:00

After brooding about this all day I have come to two conclusions, 1 I wish it had never had happened, and 2 I am not going to blog about our--or my--interactions with staff (some of whom are excellent) anymore. This is about Jenni. She is sick, and needs us--not a sideshow.So back to Jenni.As Steph wrote before, we have seen her eyes today, which is very nice. Her Oxygen level on the vent is

Laynehttp://www.blogger.com/profile/00769138077351298027noreply@blogger.com18tag:blogger.com,1999:blog-8212401366012392838.post-73509391724295768222009-03-20T19:54:00.002-04:002009-03-20T20:08:18.046-04:00

After communicating with their peers in Denmark, the doctors have decided to try Intrapulmonary administration of recombinant activated factor VII. The proceedure that Stephanie discovered online. They will likely attempt the proceedure---pending the attendings approval---after the IV factor VII has run its course.The family and I feel at peace. Come what may we have done our best for Jenni.

Laynehttp://www.blogger.com/profile/00769138077351298027noreply@blogger.com35tag:blogger.com,1999:blog-8212401366012392838.post-45860941142839650052009-03-20T19:34:00.002-04:002009-03-20T19:53:31.176-04:00

I just wanted to take a minute to thank the Chick-fil-A on Hillsboro Street in Durham. Tonight the owner recognized Mr. Wallace and me as we made our pilgrimage to get chicken for the family. He came over to speak to us and asked us how we were doing as he remembered that we had been up at the ICU. As a kind jesture he offered a gallon of lemonade and cups of ice to make our waiting better. (

Laynehttp://www.blogger.com/profile/00769138077351298027noreply@blogger.com3tag:blogger.com,1999:blog-8212401366012392838.post-3501862310180934182009-03-20T19:29:00.000-04:002009-03-20T19:29:24.925-04:00

I'm posting quickly to just give everyone a visual on how widespread concern for Jenni has been. Every location that is highlighted in green is one from which we have received visits to the website since March 16th. The darker the green, the more hits came from that location. Obviously, most came from the US, but check out the light green. We currently have 47 states and 22 countries. Check out

theoutsyder83http://www.blogger.com/profile/06498206412285063607noreply@blogger.com1tag:blogger.com,1999:blog-8212401366012392838.post-27528620891128060292009-03-20T19:14:00.000-04:002009-03-20T19:14:42.893-04:00

I've been spending virtually all of my waking moments in the room with Jenni, so I'm still not posting regularly the way I was earlier in the week. However, during shift change I get booted out regardless of any extended visitation hours. While I'm out here doing nothing better, I thought I'd let everyone know what has transpired in the last hour or so. When I returned to Jenni's side after the

theoutsyder83http://www.blogger.com/profile/06498206412285063607noreply@blogger.com4tag:blogger.com,1999:blog-8212401366012392838.post-12291984310319507772009-03-20T17:58:00.002-04:002009-03-20T18:21:12.447-04:00

Well we had a good conversation with the doctors. Jenni's condition has not improved at all. It is very grave and not improving. They are trying IV factor VII through tomorrow. Then after 24 hours we will evaluate where we stand.Meanwhile, the doctors will contact their collegues in Denmark! They will evaluate the process of doing factor VII in the lungs and gather information. They will

Laynehttp://www.blogger.com/profile/00769138077351298027noreply@blogger.com6tag:blogger.com,1999:blog-8212401366012392838.post-23640808511986745952009-03-20T13:41:00.010-04:002009-03-20T17:26:33.952-04:00

Dr. Katz and the rest of the team seem very dubious about the studies we presented to them. They seem to believe that there is no difference between factor VII applied in an IV or applied directly to the lungs.However, they have restarted factor VII in an IV. At least they are trying something. We are going to get a second opinion, as soon as we can.At 3:30 we will have our daily conversation

Laynehttp://www.blogger.com/profile/00769138077351298027noreply@blogger.com16tag:blogger.com,1999:blog-8212401366012392838.post-66830056756395800232009-03-19T22:27:00.002-04:002009-03-19T22:36:32.292-04:00

After our last post, you guys sprang to work.  Thank you.  After reading the first journal article, an investigator called us with one of the authors' pager number, office number, and schedule (he gets into the office at 3 am our time).  I have forwarded this information to Dr. Katz.  If Dr. Katz thinks this is worth trying, he now has all of the contact info he could need, at least I hope

Laynehttp://www.blogger.com/profile/00769138077351298027noreply@blogger.com19tag:blogger.com,1999:blog-8212401366012392838.post-73547522380786153272009-03-19T19:38:00.002-04:002009-03-20T00:11:20.935-04:00

 I don't have much more to report... the doctors haven't said anything more about this new procedure... but I did find another case study in which it had positive results. http://www.casesjeditorial.com/content/1/1/150 Not sure this one will help, but it might be worth reading anyway... http://www.theannals.com/cgi/content/full/42/6/771

theoutsyder83http://www.blogger.com/profile/06498206412285063607noreply@blogger.com9tag:blogger.com,1999:blog-8212401366012392838.post-14062287993243715022009-03-19T17:32:00.002-04:002009-03-19T17:39:27.186-04:00

While counting the hours in the waiting room, Stephanie (my wife) discovered a treatment of diffuse alveolar hemorrhaging--the bleeding in the lungs that I have been referencing. The treatment was done in the University Hospital of Copenhagen, Rigshospitalet, Blegdamsvej 9, DK 2100 Denmark. The article is available at http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=1794493The

Laynehttp://www.blogger.com/profile/00769138077351298027noreply@blogger.com7tag:blogger.com,1999:blog-8212401366012392838.post-53696657550495981872009-03-19T14:07:00.003-04:002009-03-20T00:12:11.879-04:00

We just had a conference with Dr. Katz. He was gracious as always. He told us some things we already knew. Jenni's lungs are not demonstrating enough improvement, they are out of treatment options and we are running out of time.We probably have about 36 hours for things to get better.Please continue to pray for things to improve with the bleeding in the lungs and that we would see it on the

Laynehttp://www.blogger.com/profile/00769138077351298027noreply@blogger.com13tag:blogger.com,1999:blog-8212401366012392838.post-1355082925972023002009-03-19T11:18:00.001-04:002009-03-19T11:31:48.955-04:00

Today seems a little better at the start.  Jenni's need for the vent seems to be decreased.  The oxygen load has been decresed from 45% to 40%, a slight improvement.  The volume has been decreased from 300 +/- to 250.  They moved Jenni to do her x-ray without crashing.  All of these are good signs. When we asked if she wanted to hear some music, she opened her eyes and

Laynehttp://www.blogger.com/profile/00769138077351298027noreply@blogger.com6tag:blogger.com,1999:blog-8212401366012392838.post-3479636548077093522009-03-19T10:21:00.000-04:002009-03-19T10:21:13.210-04:00

I haven't thought about school much recently, but I just checked my school email and I wanted to say a quick thank you for all of the support Jenni and I have received from all of the teachers and faculty (from our school system and from others) who have donated sick days to Jenni and me. To those of you associated with the school systems, know that your thoughts, prayers, donations, and

theoutsyder83http://www.blogger.com/profile/06498206412285063607noreply@blogger.com0