Funeral will be Thursday April 8, 2010
Location: Mary Mother of the Redeemer Catholic Church
1325 Upper State Road
North Wales, Pa 19454
215.362.7400
9-10:45 Receiving
11:00 Funeral Mass
Obituary will be in tomorrows (tuesdays) Inquirer
In Lieu of flowers
Contributions in Jens name should be made to the Fred Hutchinson Cancer Research Center
206-667-4902
Monday, April 5, 2010
Saturday, April 3, 2010
May 22 1971 - April 3 2010
Our beloved Jen left us today. There's a big hole in our hearts and it hurts like hell. She faced this illness with courage and grace. She is our hero. Everywhere we look, in every song we hear, in every thought we have, Jen is there. She affected all of us so deeply, her impact was so profound, her influence was so immense, that there is no escaping Jen at every turn, which is raw pain right now, but we have hope that someday Jen's inescapable presence in our lives will be seen by us as what it really is: Jen's spirit, Jen's legacy, Jen's love for us. We love you Jen.
Funeral info will be posted soon.
Funeral info will be posted soon.
Tuesday, March 30, 2010
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, March 10, 2010
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
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
Tuesday, March 9, 2010
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
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
Saturday, March 6, 2010
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.
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.
Friday, March 5, 2010
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.
Jen will get good rest tonight and tomorrow will be better.
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