Monday, March 30, 2009

TWINS

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 right....I was taller...Jenni 2 1/2 inches shorter.

None of that really mattered. We were best friends. When we 1st started school mama and daddy tried to put us in separate classes. Well, that didnt work. We missed each other too much. So we had the same classes all the way until our senior year in highschool.

I was so protective of her. To the day she died i was protective of her. She would call or come home saying someone hurt her feelings or did something to her and I would call and threaten them. They better not mess with my twin sister.

We had our ups and downs. One day we were on our trampoline fighting over a banana....She pushed me off and I ended up in the ER with my arm broken in 2 places......but Jenni got that banana.

Jenni ate oreos and milk every morning for breakfast. I didnt like them so much, but I loved the icing in the middle. So, one day I took all the oreos out of the jar, pulled them apart, ate the icing, put them back together, and put them back in the jar. Jenni cried. I ruined her oreos, but you know me, I thought it was funny (until i got in trouble).

On Jenni and Josh's wedding day...when I put on my dress it was cut 2 inches too short. I couldnt wear my heals, so I decided I would wear flip flops. Jenni wouldnt have it. So, I went barefoot...IN DECEMBER lol

Even when Jenni had her transplants we found ways of having fun; whether it be her standing on the iv pole and me pushing her up and down the hall as fast as I could or us making hot plates together....to us having deep conversations....only the kind twins could have.

Then in January, Jenni told me she had orthopenia (brittle bones) and the Dr.'s telling her she needed to walk 3 times a week. She said Judi I dont have the energy to walk, but if I had a Wii Fit I would do it every day. So what did I do? Bought it. I called Josh and told him to be expecting it. Oh when she got it; you could hear the excitement in her voice. I never got to play it with her.

Im gonna stop here, because im starting to cry...

Jenni, Just know that I would have given you the world if I could have. I love you so much and miss you terribly. I will always carry part of you with me (you are and always will be part of me). And when I graduate in May you will have a front row seat.
With all my love
-Judi (Jenni's twin)

Friday, March 27, 2009

Unforgettable

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 one time...
  • Rolling Jenni around on a hospital pole when we were supposed to be walking
  • The Spagettios and Kool-Aid dinner (on a blanket in the floor and candle lit) in Helder Hall after a bad day
  • Dressing up and going to a Broadway show just to get turned away at the door because we came on the wrong night
  • Seeing the Lion King on Broadway 24 hours later
  • Almost dropping her in the dip right after "You may now kiss the bride..."
  • Watching four episodes of Heroes a day until we finished the first two seasons
  • Cleaning the house and cooking dinner for our anniversary because I didn't have enough money for a real present
  • Writing papers and playing cards straight through the night at Waffle House, then going to class and crashing until late afternoon
  • Watching the sunrise on Christmas morning from a hospital room... twice...
  • Driving to Concord for two stops... Sticky Fingers and The Loft...
  • The trashcan, the mud, and the puddle... three battles in/around West Hall that I won... (she would disagree, though)
  • Wooter (water), Ford (forehead), and Deddy (daddy)
  • "Its a beautiful day in the neighborhood!"
  • Me: "Lawson can't be much shorter than me... 6'1 maybe?" Jenni: "No, Josh. He's 5'11." (She was right.)
  • Playing games on the laptop while she watched Grey's Anatomy or Desperate Housewives.
  • Wearing a hat all the time at WCU so hers wouldn't seem so out of place.
  • All of my students who flirted with her (she didn't like it... I thought it was funny)
  • Going to all of those Carolina games the first year we were married... Jenni bought us mini season passes for my birthday...
  • Dancing in front of all the kids at Rohanen
  • Getting accused of beating up on one another after we "fought" during dance practice
  • Listening to Casting Crowns songs for years because they were the only CDs she kept in her car 
  • Going to the beach with Melissa & Aladdin (and peanut butter & jelly sandwiches)
  • All the card games she won even though she claimed to not be any good
  • Seeing Jenni play with Maddie through a glass door because little kids weren't allowed in on 9200
  • "That was heavenly..." (when I shared my meatball sub with her in the Asheville hospital after she'd had nothing but hospital food for days)
  • Taking her "shortcut" through the UNC campus to get back to the parking deck and getting hurt climbing through a construction site
  • The look in her eyes when I gave her Coco on Christmas Eve
  • "Boys, boys, boys!" (when the Tar Heels were playing badly)
  • This story
  • This poem 
  • Long walks on campus at UNCP after midnight just talking
  • Too many thank you's
  • That horrible Willard movie
  • Our first date... Dreamcatcher and Bojangles
  • Second date... Bojangles and Walden Books (we were such nerds)
  • Breaking that chair in Pine Hall
  • Having to buy Fabuloso because she thought it smelled so much better than the other cleaners
  • "Mrs. Cornwell's Prison" at Rohanen Junior High... made with blue tape on the floor
  • Taking Ali and Hunter to Hickory Dickory Dock
  • And many more that I'll add when I have more time...
Please share your own fondest and funniest memories by posting comments below, and feel free to post again and again as you remember things and return to the site.


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Thursday, March 26, 2009

Jennibugg's Blogg Tutorial

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 important, in my opinion. Please continue to contribute.

Wednesday, March 25, 2009

Receiving Friends & Funeral Arrangements

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

A Few More Posts

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 once I wrap a few things up. I still want a memorial post so that we can all share fond memories, a tutorial so that other families in our position can do this, and a final thank you. People will still be able to post comments, but there won't be many (if any) more page updates.

I've heard that many people want to continue keeping up with me, but this site just isn't the place to do it. For those who are interested, I write occasionally on http://crazyteachermusings.blogspot.com (which needs a major face lift), so you can check me out there if you want. I won't be offended if you don't, so don't feel obligated. Jennibugg's Blogg has exploded beyond anything I ever intended or expected, but thinking about the number of people Jenni's story has touched brings me joy even now.

Tuesday, March 24, 2009

Honored to Be Jenni's Mother-In-Law & Josh's mom

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 Hickory. I was so honored that Jenni asked me to help take care of her through her two transplants. We spent many days at the clinic, hospital, apartment and Caring House and I treasure the closeness that we had together. I told her many times what an inspiration she was to me and to so many. Her faith and her courage were unbelievable. Through everything, she never complained. I thank her for loving Josh and being so devoted to him. I can't count the number of times that through her ordeals, she was worried about Josh. I am so thankful for the time that I had with her. I am glad that I could be a "stand-in-mom" until she was able to be with her mom again. There are no words to express the love that I had for her and how much I will miss her.

Thanks to Josh for being such a wonderful husband and son. Josh, you have amazed me with your faith, strength and courage through some difficult times. I have watched you take care of Jenni and many could take lessons from you. Your love and devotion to her has been evident to all. I love you and am so proud of you.

Thanks to all of you who have kept us going. Your words of encouragement and your prayers have helped in more ways than you can ever imagine. Please know that we have appreciated all that you have done whether it was a prayer, a phone call, a card, a hug, a comment on the blog, a donation, money slipped into Josh's pocket...whatever you did, we thank you. The outpouring of support from the blog and from family and friends has been overwhelming.

A thank you to all those that we have met in the waiting room, who have given us support. Our hearts go out to the families that we said good-bye to when they lost their loved one. Please know that you are all still in our thoughts and prayers. For those who are still waiting for a loved one to recover, our prayers are with you.

This special note to Selena's family: We still think of you and pray for you. Mary, I have read all your messages on the blog. Your words of encouragement have meant so much and we still think of your family. My email address is debbieroach@hotmail.com I hope to hear from you.

Keep praying, as the next few days will be very difficult. We trust God to see us through and we are comforted to know that Jenni is healthy and happy.

Monday, March 23, 2009

Jennifer Rae Wallace Cornwell

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

Grace and Peace
Layne

Safe in the Arms of God

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 to keep Jenni going.

Jenni did not want to be on the vent for long, and she would not want to be on the machine if there were no hope of recovery. We are honoring her wishes.

Thank you for all of your love and prayers. The outpouring of support has been more than I can really comprehend. It has carried us through these difficult days. May God bless you.

Grace and Peace
Layne

Patiently Waiting...

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 people have been touched (myself included). If I remember correctly, the last update Jenni got was that she had 8 followers and 20-something people signed up for email updates. If only she could see this now... I hope she will soon...

Thank you, everyone, for the love and support. Please continue to keep Jenni in your prayers.

Sunday, March 22, 2009

Torn

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 worse, her blood pressure and heart rate are fairly stable, and perhaps slightly improved. He seems to think that her condition isn't dangerous enough to attempt something so drastic.

Unfortunately, this leaves me in the same position I found myself in this morning... wondering whether I am making Jenni suffer for nothing or if I need to give her the time to fight back. When she struggles with the machine, she looks like she is panicked... terrified... I don't know how many times I can see that in her eyes before I have to let her be at peace. I just hope that I'm not already holding on longer than I should.

Please pray that God will lend me the strength and wisdom I need to make the right choices...

Sunday Afternoon

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 needed to see some improvement and have had none. It looks like factor VII through the IV has had no efect--at least to me. As a matter of fact she had to recieve blood today, this is another negative sign.

She was able to look at me when I spoke to her a few moments ago. She looked at me. It was good to see her green eyes--eye I should say. Her left eye is still swollen shut.

So, things here are deteriorating and we continue to ask for your prayers.
Grace and Peace
Layne

Saturday, March 21, 2009

good day with Jenni

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. Please continue to pray for this.

So as we wait diligently for tomorrow, we have enjoyed a few moments with Jenni.

All of us that have been in the waiting room day after day thank you for all of your prayers. All of your comments have given us strength and made us laugh and cry..... and we have appreciated them all.

Stephanie

Time to Move On

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 at 50% higher than yesterday, but lower than late last night. Her heart rate is quite low--a real concern. When they suctioned out her lungs today nothing came out. We are not sure what that means. We are coming to the end of the IV course of factor VII.
We'll wait 24 hours then reassess. Dr. Katz has e-mailed me and was rather gracious--he is heavily invested in Jenni.

We are waiting for tomorrow.

Grace and Peace
Layne

Friday, March 20, 2009

Dubious Docs Deliberate and Decide

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. She is now in the hands of God, where she has been all along.

Pray for the Docs--they have never done this before.
Pray for us we are trying to keep our emotions in check.
Pray for Jenni, and pray that this---or something else will work.

Grace and Peace
Layne

Unexpected Kindness from Chick-fil-A

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. (He remembered that it was my beverage of choice). Such a small jesture just blew me away. I have always loved Chick-fil-A becuase they are a Christian based company, but today they showed compasion for complete strangers...... WOW.

Speaking of being overwhelmed..... as I have sat in the waiting room day after day, I have read your comments of prayer for Jenni and the family. It is overwhelming to know that we have so many people praying for her and this family. Thank you all for your prayers, they have given us strength and we are grateful.

With all my love and gratefulness,
Stephanie Wallace

Thank You, World

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 these maps (and click to zoom in):


Thank you, World!

A Few Updates

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 meeting with those dubious doctors that Layne has been telling you about, I found Jenni worse than when I left. Her swelling had worsened on the left side (the same side from which they removed the chest tube earlier in the day), her oxygen had been raised to 60%, and she seemed a little flushed. I was informed that they had just performed a chest x-ray before I entered the room (proactive... good) to check on the swelling but I was still concerned about her color. The nurse checked her temperature and found it to be higher than earlier, so we turned off the heated blanket and turned it down so that it didn't cover her torso. The respiratory specialist also came in and fiddled with the ventilator. She is now down to 50%, but is breathing over the vent more often now. I'm not sure what this means in the long run... but I am encouraged by the doctors' willingness to follow up on Layne & Stephanie's research on alternate treatments.

When it comes to experimental treatments, there are never any easy answers. Please continue to pray for Jenni, but also pray that God will lend me the strength to make the tough calls that will be coming soon. I really need strength and guidance...
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Dubious Docs Reconsider

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 present the information to Josh. If Josh believes that it is in Jenn's best interest, we will do the proceedure. If not we will know that we gave Jenni our best effort. We are comfortable.

We believe that only God could have opened these doors. We are awed by your prayers and by God's mercy.

"This is no time for fear, this is a time for faith and determination. Don't loose the vision here--carried away by emotion. Hold on to all that you hold in your heart. There is one thing that has always been true, it will be true forever: GOD IS IN CONTROL"----Twila Paris.

Pray for Jenni's lungs to heal, for the bleeding to stop, and for us to see the evidence on the vent.

Grace and Peace
Layne

Dubious Docs

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 with Dr. Katz.

UPDATE I We will be meeting with Dr. Chute, not Dr Katz.
UPDATE II It is 4:00 and Dr. Chute hasn't shown up yet.
UPDATE III It is 4:30 and no Dr. Chute.
UPDATE IV Dr. Chute is supposed to meet with us at 5:00, and Dr. Katz is supposed to come with him.
UPDATE V 5:00 No doctors yet. 5:25 Dr. Chute just got in the building looks like we are going to a meeting.

Jenni remained the same last night, no change...none...nothing.
Time is not on our side

Grace and Peace
Layne

Thursday, March 19, 2009

You Guys Amaze Me

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 so.

Pray for Dr. Katz as he looks at the information late in the evening.

Pray for Jenni.  Her situation is unchanged through the day today.  She is very sick.  The doctors used the term "multi-system failure" today.  Very few recover from such failures.  We could really use some positive change before the am.

Awed by your love and God's
Layne

Case Study

 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



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We Need Your Help

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=1794493

The treatment is experimental and the article references 6 cases--not a lot, but it is better than any other treatment option we have.

Does anyone know how to contact the University Hospital? A phone number would be great.

Any other contact info would be very helpful.

As always pray.

"...whatever it takes..." Jenni Wallace


Grace and Peace
Layne

There is a Reason We Try Not Get too "Up"

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 vent.

Grace and Peace
Layne

Maybe Some Hopeful Signs?

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 tried to nod her head.  So we played Casting Crowns for her--her favorite band.

Currently they are doing an ultrasound to test to see if there are any blood clots on her left side.

I do not know if she needed any blood last night.

We feel encouraged, but we are trying hard not to get to "up."

Thanks be to God

Grace and Peace
Layne

Another Thank You

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 encouragement have been greatly appreciated (as I've said earlier), but I haven't previously mentioned the sick days that people have given to us to help us through this. Thank you...

Minor Update & Thank You

First of all, I want to mention a few things that Layne hasn't. He tends to be a lot less wordy than I am and that's probably a good thing, but I'm going to keep blabbing on here either way and add a few points that, alongside the other news, seem rather minor but I feel should be mentioned:
  • The chest tube in Jenni's left side is useless at this point, and they clamped it off yesterday. The doctors intend to remove it today. I asked if removing it would be more traumatic than leaving it but Dr. Katz explained that if it isn't functioning, it is more dangerous in than out (and Judi agreed). Out it will go.
  • Jenni's labs are showing signs of improvement in both the blood and the kidneys. The kidneys are probably only improving because of the dialysis (because she is still on several of the drugs that negatively affect the kidneys), but the improved blood work is a good sign, in my humble opinion. Yesterday was also the second day in a row that Jenni didn't need a blood transfusion.
  • Jenni's temperature dropped yesterday morning, so they put her under a heated blanket. Her temperature returned to normal, but I hope they keep the heated blanket. If she was awake and aware right now, she would want it on, so I hope it will still be there when I get there in the morning.

Now that those points are out there, I want to thank everyone who has been checking on Jenni...
  • everyone who has continued to pray
  • those of you who have helped accumulate the 7000+ visits over the last three days that I could check the numbers (and probably several times that number before Google Analytics started counting)
  • the people in all of the 18 countries who have visited the site (USA, Brazil, Canada, Finland, UK, Germany, France, Japan, Switzerland, Panama, Israel, Taiwan, Puerto Rico, Serbia, Australia, Latvia, Spain, Denmark
  • the people in all of the 45 states who have visited
  • the 75 followers and 157 people who have signed up for email updates
  • the people whose traffic has generated over $1500 through Adsense to help pay the family's expenses as we stand vigil nearby
  • the people who have donated money, both online and in person... unfortunately I've lost count of the amount... but it has helped
 I hope I feel like updating more often. Describing this as a rollercoaster of emotions would be the underestimate of... the year? the decade? my lifetime? However, I feel confident today that things will be okay... I am not in control. We all know who is... and I trust Him.

And I want to give Layne a special thank you for taking over "updating the peeps" in the times I've been a wreck.

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Wednesday, March 18, 2009

Conference with the Doc

We had a good conversation with Dr. Katz. He is one the few who seems to have any concern at all.

At this point he suggests that we continue on the course we are on. The dialysis is removing 100 ccs of fluid from her body per hour. This will help take pressure off of her body. We are trying two meds to help the clotting. One is a clotting drug one is an arthritis drug that seems to help in cases like Jenni's

If the bleeding Jenni's lungs slows or stops the evidence will be in the decreased need for the vent.

Please continue to pray for us

Grace and Peace
Layne

PS Dr Katz is actually rather kind---so scratch him off of the disturbed cottonmouth list.

No news

Well maybe no news is good news. Jenni is stable. We have had no setbacks today. All of this is good.

Jenni looks better. Her swelling is down, and numbers look good. However, I cannot emphasize this enough, if the bleeding in the lungs is not slowing or stopping she will not recover. When you pray pray that the bleeding will stop and that it will be demonstrated by a decreased need for the ventilator.

The doctors have all the charm of a disturbed cottonmouth, but seem to be on top of things. The one doctor we have liked is supposed to come by later and speak with us.

We are awed and amazed by your love and prayers. Thank you so much. You have my eternal gratitude.

Grace and Peace
Layne
Stephanie got to speak with a dr. She said that "possibly" and we want to emphasize possibly the x-ray indicates a slowing of the bleeding in the lungs.... we'll take it.

This moving thing is a problem. It means that Jenni is VERY fragile. If there is an emergency and they have to change her position it would be very dangerous.

Thanks for your prayers

Layne

Never Wake a Sleeping Wallace

Well we now know why Jenni's pressure bottomed last night. Every time they move her to do something, she bottoms. It's like her body is yelling, "leave me alone." Happens most of the time any Wallace sleeps (and yes even though she is married she is still Wallace to the bone). Wake a sleeping Wallace at your own peril.

They moved her again this am, and the same thing happened. On both occasions her pressure stabalized quickly--without any additional medication.

The x-ray on her lungs has shown no change. I'm hoping that is good. At least things have not gotten any worse. The nurse yesterday said that it would be very hard to see any improvement on the x-ray. So I'll just take the "no change" comment as a good thing.

Jenni is now on a continious dialysis machine. Her swelling seems to be down. This is good.

Things are still very grave. The lungs need to stop bleeding, if not all of the other things are irrelevant.

The doctor this am is the south end of a north bound donkey. He was by Jenni's room talking to some of his associates and I stepped out to ask a question. He took one look at me and said, "ask the nurse." Almost enough to make this preacher cuss. I'd love to shake the devil out of him in the name of Jesus.

We still need your prayers.

Grace and Peace
Layne

Tuesday, March 17, 2009

Another Near Miss

Jenni's pressure has stabilized waiting on x ray results still....

9:00

For some reason Jenni's blood pressure has dropped suddenly. An x-ray has been ordered. We are waiting the results...

Layne

7:00 Update

We have had a few frustrations this afternoon. First, during the 11:00-2:00 visitation period, they were supposed to be doing dialysis. They failed at their attempt, and did not inform the family. The frustrating part was that we missed an two and a half hours of time with Jenni. When you are measuring your remaining time with your loved on in hours, every one counts.

Second they did a bronchoscopy. Earlier in the day they decided not to do one because they believed she was to fragile. They failed to inform us about their decision. The doctors and I had a heart to heart about it, and communication seems to be a little better this evening.

She had a new port put in for a second attempt at dialysis that should start at 9:00 pm.

The doctor on the floor seems to be a little more optimistic. He thinks we can try a few things that have a chance to help.

Make no mistake, the situation is still very bleak.

Continue to pray for the lungs to STOP BLEEDING. All of this other stuff is rather academic if they do not.

Thank You,

Grace and Peace
Layne

Conference with the Doctor

Hey all this is Layne, Jenni's brother. I'm updating so that Josh does not have to do it. Jenni's situation is quite bleak. The steroid treatments normally used to correct her condition have not worked. The secondary treatment, factor VII has not worked, at least not well enough. At this point there are really no treatment options available. If Jenni does not begin to recover in the next couple of days, she will not recover.

We are out of treatments, and running out of time. We ask you for your prayers.

Grace and Peace
Layne

Blog Update, My Amazement, and My Gratitude

First of all, a few features that have been added:

  • A "New Comments" widget in the sidebar... now you can see the first few lines of the five most recent comments no matter which post the comments are posted on.
  • More pictures added to the picture page

Second, your traffic generated $218 yesterday ($1242 since we started this). Coupled with the extremely generous donations, I haven't stressed over money the way I might have without this resource and your generosity.

Third, you would not believe the cool stuff you can do with Google Analytics when you're stuck in a waiting room just itching to do something to get your mind off of everything that is going on. I added the Google Analytics html to Jenni's blog Sunday night and yesterday I found these facts that you might find interesting. I certainly did. On Monday...

  • the site received 1,235 visits.
  • each visitor stayed an average of 4 minutes and 16 seconds and visited 2.97 pages before moving on.
  • most of the people who followed a link to the site, followed it through www.facebook.com.
  • the site received visitors from 30 states (84% from NC but quite a few from Georgia, New York, Texas, South Carolina, California, and Florida as well... no more than 6 from any other state)
  • the site received visitors from Spain, Finland, Brazil, Switzerland, Latvia, and Canada

I am amazed at the outpouring of love and support from all over the United States and all around the world... and it is probably more widespread than this post suggests because I didn't insert the html code until March 15th. All of these stats came from just one day...the blog ran from March 9th to March 15th without any tracking.

To everyone who has spread the word about Jenni, you have my thanks.

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Late Night Update

A bunch of us are camped up in the waiting room outside of the ICU. We dodged the bullet tonight, but I've never been more scared in my life than when the doctor said, "Anything we do might make things worse, but if we don't do anything, she won't make it."

I don't want to repeat anything Judi already posted, but I've been advised not to read what she posted either, so I won't. For now, Jenni is about as stable as you can get when you're in critical condition (not very). She has a chest tube in each side. The right side is working and the left side appears to be worthless. She also has air around her heart that is affecting her blood pressure.

I believe the prayers helped. The doctor seemed pessimistic when he spoke to me privately but she came through this speed bump okay. With more prayers and perseverance, we can come through this with a positive result... and I'm taking Jenni to Sticky Fingers and The Loft just like I promised. And I'm going to get her a Psycho > Crazy shirt too.


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Monday, March 16, 2009

Letter To My Sister

This is Judi (Jenni's twin sister). I don't know what Josh has posted today, so Im just gonna tell everyone what I know and feel. Jenni's right lung has collapsed (pneumothorax). The doctors put in a chest tube on that side also. Since they put the chest tube in the right side her lung has partially reinflated. A small victory, but we'll take what we can get. Jenni is very very swollen. Things aren't looking good for her, but my sister IS STRONG. SHE IS A FIGHTER! Please pray for my sister, Josh, and my whole family. We really need it.

Dear Jenni,
I know things are bad right now. Worse than they've ever been. I dont understand why this is happening to you, my sweet sister. Jenni, I am sending you all the strength I have. You fight Jenni; fight for you, for Josh, for me and the rest of the Wallace family. Since the day we were born its been the girls. Judi and Jenni. I need it to be like that for much longer. 26 years isnt long enough. You are my world, by best friend. I made a promise to you that I will walk in May. I will graduate. I will keep my promise. You keep fighting Jenni. Dont give up.
With all my love,
your twin sister -Judi

Need Prayer

Jenni needs a lot of prayer right now. She's gotten significantly worse in the last hour... please pray.

Update From the Nurse

The nurse just came out and told me that they are not going to do the bronchoscopy yet. She has some swelling on her left side that I expressed some concern about before I left and they want to do another x-ray to make sure everything is okay. The nurse mentioned that the swelling might actually be air from the lung.

Still... stuck... waiting... for... results...

Its a good thing I'm a patient guy.
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Waiting While They're Testing

I had to leave the room so that the surgical team can work on cleaning out the clot in the chest tube. When he finishes, they will perform a bronchoscopy to get a better idea of how well the most recent treatments have worked.

Until then, I'm stuck in the waiting room just waiting on results.

Quick Update

Jenni appears to be doing a little better today. I didn't get the visitation hours problem fixed with the patient advocate, but he was at least able to get me Jenni's lab work each day and said that the visitation hours would be addressed later on. Most of her blood counts were closer to normal range and they didn't have to give her a blood transfusion today. The only exception is her number of platelets, so they were giving her more platelets when I left a few hours ago.

She coughed up some blood this morning (which scared me half to death) but the nurse said that it might be a good thing. If the blood is fresh, she is probably bleeding more, but if it is old, it may mean that her clotting has improved and her body is cleaning out the lungs naturally.

Her team of doctors is meeting this afternoon to discuss quite a few things (such as continuing the Factor VII, doing another bronchoscopy, and what to do about the chest tube) but I haven't heard any of their decisions yet so I'm still in the dark. Hopefully I'll be able to post some more definitive results soon.
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Sunday, March 15, 2009

Gratitude

Appreciation can be so difficult to express. I just want to say a quick thank you to everyone who has helped since all of this began, but especially to the following:

  • to all of you who have kept us in your prayers
  • to everyone who has sent a card, email, or text message to check on us or to give us encouragement
  • to all the visitors who have dropped by to check on Jenni and to keep us company
  • to everyone who has visited the site (which has generated $973 as of just a few minutes ago)
  • to each of you who has sent money through a friend, in a card, on the website, or just stuffed in in my pocket as you leave 
  • to everyone who has left a comment on the website
  • to everyone who has offered to help, even if we couldn't think of anything to ask for
To everyone who has pitched in, no matter how, you have my eternal gratitude.

Night Update

Well... today was a long day. I'm not even sure what to say about how things are going. It seems like every time I feel like things have gotten a little better, we have a major setback (like needing the ventilator, puncturing the lung, clotting the chest tube, etc). I keep getting frustrated with the doctors, but I realize that they are doing all that they can do... and right now they seem to be guessing almost as much as we are because the textbook answers aren't working. I'm just praying that God will guide them to the correct guess or the correct experimental treatment and her health will improve.

"Whatever it takes."
-Jenni-
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Chest Tube Update

We have preliminary CT scan results (from the nurse). The surgeon who put the tube in checked out the scan, said that the tube was positioned correctly, and decided to leave it for now. They will be starting dialysis soon, but her blood pressure has been higher than normal so they are going to do an echocardiogram first. I don't know much more than that at the moment... still waiting to see her again.
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Chest Tube Troubles

Not much has changed today as far as medication goes except that she is on the insulin drip again instead of getting shots. However, the tube they put in Jenni's chest yesterday to help reinflate her lung has clogged (the blood clotted inside it and stopped it up). They aren't sure what to do about it. They mentioned leaving it as is, taking the whole line out, or just trying to remove the clot. It depends on the results of the CT scan that they should have completed during the 2:00 to 4:30 "no visitors" time. It is clear that while the tube is clotted, no more fluid can be drained. However, the clotting may be preventing the lung from bleeding into the chest cavity. Hopefully I'll have good news when I get a chance to post again. I wish I knew whether this was good or bad news. It sounds bad, but if there is a possibility of an upside I am grateful for that.
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Saturday, March 14, 2009

Crashing With a College Buddy and Updating Before Bed

Today was my last day in the hotel, but a friend of mine in Raleigh (Ben) is letting me crash at his place.

Jenni was still heavily sedated when I left. They are trying to reduce the oxygen percentage that she's getting from the machine, but they can't get it lower than 40% without her oxygen levels dropping dramatically and having to raise it back up to 40. She also started a new drug tonight called Rituximab (a chemotherapy drug usually used to treat lymphoma and leukemia). I knew she was starting a new drug but didn't realize that it was a chemo drug until tonight.

They also decided not to put in another central line at all. They are going to put in another PICC line. I liked that news because it is a much less serious procedure putting in a PICC line.

Jenni's sleeping... and I need some sleep... I'd give an Adsense/donation update but I haven't been able to sign in to Adsense all day... will post tomorrow...

Just A Little Update

The Dr. put the chest tube in successfully! Hopefully this will reinflate her lung soon. The Factor VII that they are giving her seems to be helping. Which is a good sign. Josh is back there with her now. My sister is a fighter (just like my mama was)! She will prevail. Stay strong Jenni. I love you! <3 your twin

Another Mishap

The doctors called Josh this morning around 7:30. There was a complication while inserting her central line (a line in her neck to give her some medications). Her left lung was accidentally punctured (which enlarged her pneumothorax). Therefore, they didn't get the line in. Josh and I (Judi-Jenni's twin sister) went back this morning and stayed until they kicked us out to to put in the chest tube. (this will help to reinflate her left lung). She is stable and still sedated. She opened her eyes right before we left. We kissed her on the forehead, told her we love her and left.

Friday, March 13, 2009

Another Big Thank You

I just wanted to say thank you again to all of you who are praying and providing support for us through whatever means you have chosen. I have been overwhelmed by your generosity. Just to give an update, your traffic has generated over $400 in the last three days through Adsense, and your gifts have contributed close to $3,000 more. As I said earlier this week, I don't know how to thank everyone for this outpouring of love and support. I hope, for as many of you as possible, that Jenni and I can return the favor someday.

Late Night Update

Tonight, Jenni began receiving a drug that they are calling Factor 7. It has some dangerous side effects, but the doctors think that the potential rewards outweigh the risks at this point. They have to stop the bleeding in the lungs before they can stabilize her and fix the rest. The doctors also added another line to give her drugs, this one in a vein in her neck. They are also slowly decreasing the percentage of oxygen given to her through the breathing tube. They want to reduce it to fairly normal levels, so it is a good thing that it was reduced and she tolerated the lower level of oxygen well.

She was somewhat awake this evening and we talked to her some. She smiled when I told her that Carolina won today, and that really helped my peace of mind. She can't talk, but she can nod her head or squeeze your hand for yes/no questions.

She seemed okay when we left. I'll feel better when I'm back with her again in the morning.

Waiting Hours...

I'm a little less upset with the doctor I wrote about earlier. He made a point to speak to me when I came back in and he let me know everything that was going on. As long as he keeps me informed, I'm okay, although I still feel a little put off by not getting to be there for rounds.

I guess you could say that the team of doctors is working on a new game plan right now. They did another bronchoscopy this morning and informed me that the bleeding in her lungs is worse than it was last week when they did the first one. They also took some cultures, but they can't tell the results of those until later on. They have said before that they believe the condition of the lungs is driving all of her other problems and that the TTP is what likely created the bleeding in the lungs. 

The doctors are thinking about trying some special form of vitamin K, which they sometimes give to hemophiliacs to help form blood clots. They worry that the blood clots might be created where they wouldn't be advantageous (or perhaps make things worse), but now that they know that the lungs are worsening, they want to be more aggressive because it has become obvious that the treatments up to this point have not helped. They are also starting dialysis sometime this afternoon to remove some toxins from her blood that her kidneys aren't removing, and they are going to stop plasmapheresis for at least a day because it doesn't appear to be helping her.

Jenni looks peaceful. She is heavily sedated and has had quite a bit of pain medicine. Now I'm just waiting for the doctor to talk to me about vitamin K and for visiting hours to begin again so that I can go sit with her.
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Chat With the Nurse, Mad at the Doc

Jenni's nurse came out a few seconds ago and told me that Jenni is doing fine. The nurse seemed very sociable and nice... much better than many of the nurses I have encountered down here in the ICU. I'm glad someone with a good attitude is taking care of Jenni.

She also let me know that the doctor who won't let family stay in the room while he does rounds is on the hall again, so I'm not supposed to go back there until around 11:00 when he finishes. I almost left to go see if I could find a patient advocate, but then the nurse said I could come back. Before I even got the gloves and gown on, the doctor came back down the hall, looked at the nurse, pointed at me, and they kicked me out. He didn't even speak or make eye contact with me... jerk. I am definitely going to go talk to a patient advocate before the end of the day. I realize that she's out of it, but it just pisses me off not being able to be in there with her when the scheduled visiting hours say that I should be able to. It isn't like they're going to extend visiting hours later in the day to make up for the time he's taking away.

Anyway, while I was suiting up, she told me that Jenni has had moments when she was slightly aware. She is responding when people talk to her and she let the nurse know (not sure how... she didn't explain... maybe a nod?) that she wasn't in any pain. The nurse told me that she is constantly on both a sedative and a painkiller, so she feels okay.

In any case, I'm not going to talk to anyone yet because I've got the feeling that this nurse will try to sneak me in if she gets the chance and I want to stay close just in case, but when visitation hours officially end and I know no one will let me come back, I'm going to go have a discussion with someone even if it doesn't amount to anything. Jenni made me promise to be proactive and make sure the doctors do the right thing, so I intend to.
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Better Than I Sound

I apologize to anyone who freaked out after reading last night's post. I was an emotional mess and needed to vent, so I got it out. Last night, I wept like a baby. Today, I'm ready to fight. Jenni has conquered too much to lose to this. I broke one promise last night. I won't break the other. She will be okay (and so will I).

God is our refuge and strength, an ever-present help in trouble. Therefore we will not fear, though the earth give way and the mountains fall into the heart of the sea

Some of the Toughest Words I've Ever Written

Tonight was tough. Jenni's oxygen level dropped suddenly again (the third time today) and they sent a doctor in to talk to us. He explained the pros and cons of starting Jenni on a ventilator, and Jenni told him to do it. I'm only going to explain the pros because I don't want to write about the cons.

Pros:
  • Jenni's lungs and muscles will get a much needed rest. They have been working overtime for a couple weeks now trying to keep oxygen flowing and the machine will take over for her.
  • Jenni will be asleep most or all of the time until she recovers and she won't experience any pain.
  • She will get closer supervision in the ICU.
The doctor told us that the medicines she is receiving usually work, but for her they are taking unusually long to make a difference. He said that if things continue at the rate they are going now, that she would be on a ventilator in the next day or two anyway and that it is always better to do the procedure under controlled conditions instead of in an emergency situation (such as if her oxygen level dropped and they couldn't get it back up). This was the first doctor I heard say that there was a possibility she wouldn't make it. He said that he still thought she would, but that she should keep it in mind when she made the decision about the ventilator. Jenni just kept saying, "I'll do anything to get better. Just do it. Do whatever you need to do to make me better."

So the doctor put things in motion, getting an ICU room ready and whatever else needed to be prepared. I made a few phone calls and we spent two hours talking about the ACC tournament and how I'm going to take her to Sticky Fingers and The Loft as soon as she wakes up. She also made me promise to make sure the doctors keep trying to get her better because she doesn't want to be on it for long, and to stay with her until the doctors made me leave because she was scared. Those of your who know Jenni know that she doesn't get scared. I was worried... but the severity of the situation still did not hit me until Jenni admitted that she was scared.

Then the nurses came to get her and asked me to leave for a few moments while they unhooked all of the machinery and got her ready to move to the ICU. I did, and when they pulled her out of the room they even let me walk with her down to the waiting room of the ICU (which the nurses wouldn't let me do last time). I waited in the waiting room until they got her settled and they allowed me to come back for a few minutes before they sedated her.

She gave me that look, like she was worried more about me than about herself, but I don't think she noticed when my voice cracked. I didn't do as I promised. I told her that I was going to hurry and get out of the doctors' way so they could get her better quicker. I squeezed her hand, kissed her on the forehead several times, told her I loved her, walked away, and held myself together. If I had stayed and kept talking, I think I would have lost it, and I didn't want her going to sleep with that on her mind.

As far as holding myself together, I think I did quite well until I got back to the hotel and started writing this...

I'll post an update as soon as I know something tomorrow. If I don't answer phone calls, I apologize ahead of time. I would rather not do a whole lot of talking right now. Goodnight, all.


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Thursday, March 12, 2009

Quick Update

About an hour ago, Jenni's oxygen levels dropped and they had to raise the oxygen she's getting through the mask to 80%. They lowered it to 70% about ten minutes ago and her oxygen levels have remained stable. 'Twas just a scare, apparently.

Frequently Asked Questions

Q. How does Adsense work?
A. Adsense is an advertising service run by Google. Companies pay Google to post their links all over the place. In turn, Google pays the people whose websites show those ads each time a large number of people see the ad and each time someone clicks on an ad. If you add Adsense to your website, you will earn a little just for page views and a larger amount for each person who actually clicks on an advertisement link.

Q. I see that there is a number of comments at the bottom of each post, but how do I see them and/or post my own?
A. There are two ways to get to the comment form. One is to click on the link for the number of comments. The other is to click on the title of the post itself. Either way, you should see what others have written and there should be a blank form at the bottom of the post that you just fill out and click on "Post Comment."

Q. Why do I have to have a Google account to post comments?
A. You don't anymore. I realized this and fixed it. Now anyone can post.

Q. I signed up and I'm not getting email updates? Why not?
A. First of all, the email updates only happen once per day. I'm working on a solution to this problem but I don't have one yet. Second, you have to confirm your subscription. If you haven't yet, it won't send you anything. If you didn't get a confirmation email, make sure you check your spam folder in your email account. By the way, if you know how to make Feedburner send email updates more often or if you know of a service better than Feedburner, please let me know.

Q. I have updates, but I don't see pictures and sometimes it looks like you didn't finish writing!
A. The email updates only show the title and the first part of the post (I'm guessing 200-300 characters but I'm not sure). If the update was longer than that or included pictures, you'll have to click the title to see the whole post. The email updates also don't include any of the hyperlinks, so if I linked the word pneumothorax to a page that explains the term, you won't see it on the email update.

Q. What happened to the posts at the bottom of the page?
A. After a certain number of posts are reached, the older ones rotate off. You can still find them by clicking on "Older Posts" at the bottom of the page. Also, I have added a linkbar at the top of the page that links to stuff that I think should stay on the front page of the site.

Q. What can I do to help?
A. Keep praying and keep coming back to the website / hospital to check on Jenni. Forward the web address to folks to whom we haven't sent it. Post messages for Jenni. She's been reading them and they make her smile (which I like to see).

Q. You didn't answer my question!
A. Just post a comment on this page and I'll try to get to it as soon as I can.

Another Little Scare

I was sitting in the room with Jenni just a few moments ago, typing some responses to questions about the blog, when her oxygen levels just randomly dropped. The nurse came in almost immediately, rechecked her stats, raised her oxygen to 80%, and called for the doctor. By the time the doctor made it to the room, her oxygen level had stabilized and she was asking what happened. She didn't even realize she was breathing with any more difficulty.
Three doctors came in (one was Dr. Chute, the others I'm not sure) and checked her out. They couldn't discern what caused the drop, but suggested that your body naturally fluctuates some and that it was probably natural. However, (and this is why I like Dr. Chute so much), even though he talked like it was probably perfectly fine, he still called in a specialist to come see her and is going to order a CT scan. I don't know how quickly either of those will happen, but it makes me feel better that even though he thinks things are probably okay, he's staying on top of things just in case they aren't.

Right now, other than her oxygen being at 80% instead of 60%, she looks and sounds like nothing is any different. The lung specialist just said that he was going to add an inhaler to her treatments (the name just slipped my mind; I'll have to fix this later). It should help with the lungs as well. He also said that he would step down her oxygen from 80% back to 60% in small steps this evening, so this was probably just a false alarm even if it did scare the mess out of me.

I'll keep going with the FAQ and I'll keep updating as I learn new things.


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Pictures of Jenni

I know that quite a few people who are visiting the site don't even know us, so I wanted to make sure that people can put some faces with names that you're reading. These are all pics of Jenni in healthier and happier times. If you have pictures of Jenni that you would like me to add to this slideshow, post a comment with a link and I'll add it as soon as I have time.


FlCreated with Admarket's flickrSLiDR.

A Busy Morning: Lungs a Little Worse & New Breathing Treatment

This morning, the nurses noticed that her oxygen level had dropped, so they changed the oxygen mask a little. They added a tube on each side that should help keep the concentrated oxygen close to her mouth and nose longer. It wasn't a huge change, but it put her oxygen level back up into the normal range again. We have been joking about how the new tubes make it look like she has antennae, so Jenni suggested that I take her picture and show everyone her new mask. I didn't even know that she had a camera here, but she brought one for some reason.



When breakfast came, she tried removing the mask long enough to take a bite of food and then replacing it while she chewed, but her oxygen level dropped dramatically when she did so I broke a plastic fork in half and fed her through one of the holes in the mask. That was a fiasco... we only got about a fourth of her food through before we replaced the blue tube, but she did get in all of her fluids (sweet tea, apple juice, and a cup of water).

When the doctor arrived, he started her on a new treatment, a bronchodilator called albuterol. I'm not sure exactly how the drug works, but they hook it up to the mask so she breathes it in and it is supposed to help out her lungs. Her kidney functions are slightly worse than yesterday, but no worse than they were last week so it may just be a small fluctuation.

She is also off of the insulin drip, but they are still giving her insulin shots. I'm not sure if that's good news... it means she needs less insulin but it also means that they are poking her more often now.

Judi is visiting and she brought a friend from nursing school. We took some more pictures, so I thought I'd share. Jenni gave the "ok" on these as well. I'll post a slide show with pictures of Jenni in good health soon and I still plan on posting more information about the Adsense program later today. It has just been a busier morning than anyone expected.


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Wednesday, March 11, 2009

A Big Thank You

I just want to say thank you to all the people who have visited the hospital and/or the website. All of your thoughts and prayers are very much appreciated. Yesterday, your website traffic generated approximately $16. Today (assuming no one visits between now and midnight) your visits generated approximately $136, not to mention the $20 in direct donations.

I feel like I should say something really eloquent and profound, but everything I start to type seems horribly inadequate. Just... thank you, everyone.

Tomorrow, in addition to updates about Jenni's condition, I plan on answering some common questions about the website, the Adsense program, and the email subscription service. I also recognize that this blog has extended far beyond our circle of friends, family, and coworkers, so I'm going to add some information about Jenni's history and some pictures so those of you who don't know us can put a face with the name.

For now, I'm crashing... thanks again, everyone. Goodnight.

New Bed and a Wendy's Dinner

They ordered Jenni a new bed this evening and it is nice. It is definitely better than the one she was in earlier. They said that it would be better for her as far as preventing bed sores (which she doesn't have, to be clear... they just want to make sure she doesn't get them). It also adjusts without the grinding noises that you hear most of the beds making.


Wendy'sImage via Wikipedia
She didn't eat much of the dinner they brought her, but the nurse said that a grilled chicken sandwich should be okay, so my mom and I dropped by Wendy's and bought her one. She only ate about a third of the chicken and didn't touch the bread, but any calories I can get into her are well worth a half-wasted sandwich.

As I said earlier, she is much more attentive and alert than she has been in days. She didn't need any pain medication today. Unfortunately, her lung functions have not improved much at all (on 60% oxygen that she is receiving through a mask).

I'll post again tonight before I hit the sack. I doubt anything will change in the next two hours for Jenni, but I want to talk about all the visitors (both at the hospital and online) and Jenni has asked me to hold her hand so this paragraph has been chicken pecked and I don't have the patience to write much more with only one hand.
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Youtube Video About 9200

I just wanted to share this video I found online about the ABMT unit that Jenni is staying in (9200). Even though she isn't having a bone marrow transplant (which is what the video describes), they still bring her to this special unit whenever she is seriously ill to make sure she is working with nurses and doctors who understand her background. Many of the doctors and nurses shown in the video are the people who are responsible for taking care of Jenni every day. The nursing staff in this unit is awesome... couldn't ask for any better.



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Moving Back to 9200

I just left the room because they are moving Jenni back to the ABMT unit and they don't let visitors walk with the patients while they are being moved. We're excited because there aren't visitation limits and the nurses are a lot more sociable on 9200 (as a group... there are exceptions on both floors). I'm outside of the unit, waiting for her to make it upstairs. I'm a little calmer after this morning's mess, but I'm still planning to talk to a patient advocate about the issue. I just don't think it is right to make a husband leave while the doctors make decisions about his wife.

In any case, her oxygen levels haven't improved but she's stable and she is a lot more alert than she has been the last few days. I think it is because they haven't given her many pain medications today. Hopefully, her joint pain won't return and she won't need the pain medication at all. That would be awesome.

Upset With a Doctor

There is some doctor in the ICU today who is really grating on my nerves. According to the sign in the hallway, visiting hours start at 9:00, but there is a doctor who isn't letting anyone into the unit at all until he finishes seeing every patient. They wouldn't let me in at 9:00 but they finally let me come back when Jenni got upset and asked for me. But even then, when the doctor got to her room, they kicked me off the hall. Somebody mentioned violations of HIPAA as the reason for clearing the hallway, but shouldn't the primary caregiver be allowed to be present when the doctor makes his rounds? I don't think it would bother me so much if Jenni was fully aware and understood what the doctor was talking about... but she's not fully comprehending everything and she knows it... and as I was leaving she just said, "No, I don't know what's going on."

I'm trying not to explode..........

Luckily, Martha (see the sidebar if you click the link; Dr. Chao was the doctor over her bone marrow transplants) was in the room when the doctors came through. I don't know her exact title anymore, but she's one of the head honchos on the ABMT team. She was able to stay and she let me know that they really weren't changing anything today. They're keeping her in ICU until her breathing improves and they're going to continue the Amicar and Enbrel medications.

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Early Wednesday Morning

I don't have an update on Jenni right now (and probably won't until lunchtime because of visiting hours in the ICU), but I wanted to give a quick update on the finances. I just read an email from Tracy Sigmon that really took a load off of my shoulders. Apparently, I can apply for shared sick leave. I was under the impression that I couldn't and was going to apply for Family Medical Leave (which is unpaid), live off of savings, and try to make money online somehow (starting with Google Adsense on this site).

I just wanted to thank everyone who visited the site yesterday. I've found myself coming back continuously just to reread the info on her conditions and medications. When there are so many it can be difficult to remember, especially when so many of them are acronyms or nearly impossible to pronounce. All of your traffic produced $16 in earnings and I greatly appreciate everyone's thoughts and prayers. I'm going to get ready so I can head to the hospital, and when the first round of visitation hours end I'll post another update.
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Tuesday, March 10, 2009

ICU Waiting Room (Part II) and Fixing an Email Issue

I'm sitting in the waiting room again, waiting for the next set of visitation hours. I was able to speak with one of the doctors about her and he told me that her case of pneumothorax is mild... not the fully collapsed lung that I envisioned when I started researching the condition online. There is air in her chest cavity outside of the lung, but it isn't one of the more severe cases of pneumothorax.

I also just learned that the email subscription that I set up on the site only provides updates once per day. I'm about to check the settings on the service to fix this issue, but as of right now, if you want up-to-the-minute news you'll have to either subscribe to the RSS feed (which you can check with Google Reader or other services) or keep checking the site. I'm working on it, but I only have a few minutes before visiting hours resume and I don't know if I'll be able to fix it until later. Hopefully I'll find a quick fix... sorry for the delays on information...
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ICU Waiting Room

I'm sitting in the ICU waiting room. They have taken her back and wouldn't let me come with her, but they're supposed to be coming out to get me when she has settled and all of the machinery is connected.

The nurse who just visited mentioned that the last x-ray showed evidence of a pneumothorax (collapsed lung). Judi described the treatment for that, and I'm praying that isn't the problem.

Hopefully I'll know more soon...

New medication

Dr. Chute was just in a few minutes ago and is going to start some new medication that will hopefully turn things around for Jenni. They will be giving her Amicar for the bleeding in her lungs and Enbrel for the Graft vs. Host disease. The new drugs will be given every six hours. They have just finished giving her the plasmapheresis. Dr. Chute has decided to move her back to ICU to better monitor her breathing.
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Another Scare

no original descriptionImage via Wikipedia
I came to the hospital earlier than normal this morning. The nurse called my phone (which didn't show a missed call... odd) and then called my mom's (who was with me at the hotel). They had to put her on an oxygen mask last night, but this morning they had to raise the oxygen to 80%. (Note: That isn't Jenni in the picture, but its the same exact kind of mask that she's using.)

What is frustrating is that they really don't know why her oxygen levels keep dropping all of a sudden. It seems like every time they feel like she's improving, something like this happens and she's back on a mask.

In any case, they did an ABG (arterial blood gas) and another chest x-ray. They will decide based on those test results whether or not to move her downstairs to the ICU.

Right now she is stable. Hopefully I'll know more soon.

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