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

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

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.

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-

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.

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.

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.

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.

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.

Image 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.

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...

Introduction

Jenni has now been at Duke Medical Center for eight days. We don't have too much information on exactly what has been happening with her health, but we do know that things went downhill fast the first weekend of March and have pretty much stabilized since we arrived. We do know the following:

• She has graft vs. host disease in her eyes and mouth (not the primary concern, but frustrating for her).
• She has fluid in her lungs, and a bronchoscopy showed evidence that there had been bleeding in the lungs as well (DAH). They are treating the fluid with lasix (which will also help her kidneys, from what I understand) and the rest with steroids.
• She has CMV, which appears to be the main thing affecting her lungs.
  
• She has TTP (thrombotic thrombocytopenic purpura), which is what the focus of the treatments have been on. They're treating this with plasmapheresis. The doctors seem to think that this is the driving factor behind the other issues.
  
• Her blood sugar is bouncing all over the place. This morning it was 96 (normal range) but it has been as high as 500+. They have a bag of IV insulin running at all times.
• She has extreme joint pain in her legs that no one seems to understand, but that they have treated with diloted (hope I spelled that correctly). It might be because of the increased steroids, but it might also be due to fluid buildup from her poor kidney functions.

In any case, there are so many things going wrong right now that I have probably forgotten something, so please forgive me if I have. I'm beginning this project to help fund Jenni's caregivers (short term goal) and cover any other medical expenses that arise due to her current condition (long term goal). On this site, you'll mainly find updates on Jenni's condition, but you may also see the occasional post about Adsense or my goal of making money online while Jenni is out on disability and I'm missing so much work.

Hopefully we'll be able to generate enough traffic to help pay the bills. Notice the emphasis on traffic. Although there is an option to donate at the bottom of the page, all you need to do is visit the page to help us out financially (thanks to Adsense). Thanks for everyone's support and prayers!