March 30 2010......Hope Floats

It's been really hard to find the time, energy and courage to post. Thank you to all of you who are still asking, hoping and praying for Jen.

She is having a hell of a time...to say the least. I can't begin to catch you up on all that has been going on. Jen was on the ventilator and showed signs of healing. They extubated her a week or so after she was put on...that only lasted a day. She was struggling and they intubated her the next day. The drs were confident that Jen needed a few more days to heal. We also needed to find a happy medium between Jens sedation and her level of consciousness. She was having high anxiety and that hindered the success of her doing the work of breathing on her own. Turns out now her lungs were not as healed as much as we thought they were and that other major problems were coming our way. At the two week mark they had to do a tracheotomy because prolonged ventilation (tubes down her throat) leads to infection. The trach was not so bad. They seemed to have her in a comfortable place and Jen was beginning to show signs of consciousness. She could shake her head and even at times smile. Squeeze your hand etc. Those events were short lived and within a couple of days our worlds took an even more dramatic turn. Bad news on top of bad news on top of bad news. Days of one problem after the other was all we had. All I can do is sum up what has been happening. Jen has three major problems...none of these problems are treated the same way and in fact treatment for each problem only aggravates the other...so much so that the drs have expressed how concerned they are and that they are doing everything they can. Basically, they are exhausting every option trying to find a balance in the treatment.

Jen has severe cmv(a virus) gvhd (graft vs host disease) and her lung issues. She is heavily sedated and is on the ventilator at an elevated setting. It's all a waiting game and unfortunately it takes days to hear results.

We are asking you to keep the prayers coming. It helps us to stay hopeful. We do still have hope. Jen is our miracle girl...all we ask each day is to receive good news to keep us going. We will take anything. And FINALLY today we did (really good news)......so we continue to hope, pray and be grateful.

Love you all.

Wednesday 3/10
I can get used to this. Sitting in a chair besides Jen and Doctor after Doctor entering her room and telling us that Jen's lungs are improving as she's doing more breathing on her own. Today they moved her from 60% to 50% and she was down to 40% when I left. The beginning of the weaning off the ventilator has begun. At this writing, there is a chance that she might be off the ventilator by the end of the week if she continues to make the progress she has in the last couple of days. We are very encouraged and will definitely keep you up-to-date.

Talk to you soon. Think good thoughts.
jo/mom/gran

Sunday 3/7
I won't even try to be as eloquent as Meggie in expressing how this experience has changed our lives. But only I can express how proud I am of my daughters and what wonderful women they have become and how much I love all three of them and, in Jen's and Meg's case, their wonderful families.

Today was an unbelievable day. It was pretty obvious to us that the doctors/nurses were at odds on how to care for Jen's sedation problems. It just didn't seem like they could keep her in a comfortable place. No matter how much they played with the dosage she was receiving, she remained agitated and hard to comfort. They moved the vent back up to 100% to take the load off her and try to ease her restlessness. She was still very agitated.

So, in their infinite wisdom, they assumed we were playing a part in her condition and decided to ban us and all visitors from her room indefinitely. Of course, you know we will do anything to help Jen get better so, like little lambs, we heard them out, and hovered in the "family room" waiting for our next orders. In the meantime, the doctors still had to figure out what to do about her sedation. So, they finally called in an anesthesiology consult who recommended a new drug for her that they use in surgery. Once it was administered, she settled down into a peaceful rest, and at the end of the day, we were allowed to re-enter her room.

The remainder of the day went very well. Jen remained calm and immediately her stats improved so by night, she was back down to 60% on the vent (where she had started that morning). These ups and downs take their toll on all of us, most especially Dave who has been staying at the hospital 24/7 and wanted to try to get home to see his kids, etc. but was afraid to leave her side. If you remember back in Seattle we started switching off nights staying with Jen and we will begin that plan now. Dave went home and I stayed and we will alternate as before for as long as needed.

Monday 3/9:
Jen had a good night - in comparison to yeterday, JEN HAD A GREAT NIGHT! And, what a good day for me to be there as every consult who walked into the room seemed to have good news - her lungs are improving. They moved the vent down to 50%. Her blood work and blood gases look good. We believe the next step is weaning her off the ventilator all together. They have also started to cut down on some of the sedatives she's getting (not the new one so far) but the others. She started moving around more but they say now this is a good sign as they want her to get used to moving about and breathing more on her own. She wasn't combative in her motions, just mostly leg movement and now they believe some physical therapy can be started to get her joints active again after lying so long in the bed. Every day brings news - some good - some bad- but today was filled with only good and we'll take it and cherish it and look ahead to more of the same tomorrow.

We thank you every day and you are all in our prayers as we are in yours.

jo/mom/granny

March 6th

When I left the hospital last night at 7pm jens ventilator was set at 80%. When I woke this morning she was at 60%. WONDERFUL news!! We are just waiting and trying our best to sit tight and be patient. It's crucial for Jen to be heavily sedated and that girl needs A LOT of sedation! It's the best way for her to heal. It's hard to watch her when she's not getting enough of the sedation. Hard is an understatement. It's frustrating and painful. She gets very stressed and her heart races..it's a very helpless feeling. But, when she bounces back and settles down - we settle down with her. I don't have very much to say tonight. I hope and pray tomorrow her vent will be set to 50%. I hope I hope I hope.

I know this blog is suppose to be about Jen and her progress...but I just have to express the huge life lessons we are learning. The pain and heartache we feel is horrible but we are learning more than ever how precious life is. How not to wait to express what is in our hearts. How special family and friends are. We are learning so much about gratitude and about what matters..And once again Jen is at the heart of it. She continues to bring us all together.

March 5th

Every morning before heading to the hospital we check in with Dave to see what kind of night Jen had. Unfortunately, he did not have good news to report. Jen struggled throughout the night and things only got worse when the nurses came in to give her her bath. She gets very agitated when she is "messed" with. Her oxygen levels dropped, her blood pressure and heart rate soared. The progress Jen has made the last couple of days has been really encouraging. This really set her back. It took a very long time to calm her down. Poor Dave. Watching Jen struggle for 5 min is horrible - to see it go on for any longer than that had to be absolute torture. She was on 100% oxygen for most of the day. It took a lot out of her...not a good day. She did start to improve as the day went on. They are seeing now just how much sedation Jen needs to get adequate rest. They do not believe her lungs are any worse than they were. The lung biopsy did not happen and who knows if it ever will.

Jen will get good rest tonight and tomorrow will be better.

March 4th

Jen is moving at a slow and steady pace. Each day she is showing signs of improvement. Her ventilator is set at 60%. 10% lower than yesterday. We are shooting for 50% tomorrow. We now believe that her lungs are extremely inflamed. The steroids are working. It doesn't look like they will be doing the lung biopsy tomorrow. There is a small window of opportunity and as the pulmonary guy put it you are either too sick or not sick enough. Jen has been on steroids for a couple days now and because she is improving there is a chance that they may be biopsying a healthy piece of her lung and therefore won't be able to come to a definitive conclusion. The lung biopsy is a very invasive procedure. There are risks of infections and it will be very hard on Jen given all that she has been through. The decision will be made at the last minute. As we have all seen this week.. minds are always changing and the changes happen quickly.

Her sedation level will change too in the days to come. It is high now because it's important that she rest and is comfortable. BUT...she has had moments where she will blink, move her arms, and things like that. She gets pissed off as you can imagine. It usually happens when the nurses are tending to her or moving her. Or as Dave says when he's bugging her...but today...Dave asked Jen to squeeze his hand and she did! So we know she knows we are there. Cheering her on, calming her down and loving her more than we ever have!

Thank you for all the love and support...We sit at the hospital and talk about how amazing it is to be surrounded and supported by such good people.
Keep the prayers coming!
Goodnight.

March 3rd

Jen definitely had a better day today than yesterday. She is still heavily sedated. The test done yesterday showed no signs of infection. Which in some ways was disappointing because they would be able to narrow in on and infection and treat her accordingly...and less of a guessing game. We are so anxiously waiting to find out what is causing all these problems. She was not stable enough to do the lung biopsy today. However, she is showing signs of improvement. The dr's have started high doses of steroids. She had a restful night last night and day today for the most part. We believe the steroids are helping...and as the dr put it...jen took baby steps in the right direction. Her dependency on the ventilator has decreased slightly. Huge and happy news for us. There is still a whole lot to figure out. Wish I could tell you more...and I have left out a lot of important things I am sure..that is all for now.

We are so grateful to ALL of you for the prayers and phone calls emails and messages! Thank you so much!

I also want to say a extra special thank you to Pam and Courtney...love you guys xo

Jen

The latest on Jen is that she was admitted to the hospital last tuesday for pneumonia. Unfortunately, she has only been getting worse. Once again please forgive me for not knowing all the medical terms. As things stand now they believe that she may have a bacterial infection that has started in her heart and has moved to her bloodstream. It has caused her lungs to fill with fluid. A severe eye infection in both eyes...along with other problems I am sure but these are the biggest. She will undergo a test today for her heart and a lung biopsy tomorrow. The goal is to find where the infection is and then aggressively treat it. Nothing is confirmed but based on the symptoms she is having they think the infection started in the upper chamber of her heart. We will HOPEFULLY know more today or tomorrow.

In the meantime Jen was put on a ventilator last night because she was struggling too much to breathe. This was an agonizing decision for her...for everybody. Everything happened so fast. It became apparant that we had no other choice. She would have been put on the ventilator today to undergo these tests -- so this gave her body a break and a chance to rest. She is heavily sedated. Dave has not left her side. My mom is caring for the kids and making trips back and forth. The kids do not know the latest changes so please use discretion if you are talking around your children. We are hoping that we get to the source of the problem and beging treating it...with the goal of getting Jen off the ventilator as soon as possible. The dr's are saying 2-3 days.

We need your prayers and positive energy. We are scared. Jen is scared.
Thank you all so much for your support. We know your prayers work! I will blog again when I know more.

xo Meg