Karen is Home! Update from Mike 3/30

Well the journey began some 3+ years ago leading up to a double lung transplant and a 70 day rollercoaster ride. Karen's finally home. Needless to say everyone has been anticipating this day for a long time. It was so weird having her in the car on the way home without any tubes or oxygen tanks, just her breathing on her own with her new young lungs. Inside, there is no rumbling of the two concentrators. Noone is tripping over Karen's 100ft air hose that lurks around on the floor waiting to attack. What a miracle this really is to witness.

This was all made possible on January 20th when a tragic motorcycle accident took the life of a 20 something year old Nebraska young man. Due to his thoughtful and unselfish act of signing up to be an organ donor, Karen was given a new lease on life. Unfortunately one family's hardship became another's happiness. We think about the young man and his family everyday. I hope the young man is looking down upon us and seeing how happy he has made others with his contributions. Thank you so much! YOU ARE OUR HERO! We continue to think of the family left without their loved one. I hope they can find peace and realize that their son/husband saved lives with his unselfish act of being an organ donor. I hope one day to meet them and thank them.

I want to thank the entire staff on the 6th floor PPCU: the nurses, doctors, techs, physical therapists, respiratory therapists, housekeeping, dietary servers and volunteers for their professionalism, dedication, and their genuine caring attitude they gave to us everyday. What made these people so special was their ability to know when to push and work Karen and when to give the much needed TLC. They got to know us as individuals and that their care needed to reflect that as well. Plus they had to listen and deal with me and in case you don't know I speak my mind. All those years with Kelsey in the hospital before she passed away taught me that you have to be the advocate for your loved one. Sometimes they may not like what I have to say, but I know something they don't, I know Karen. They came to understand this and listened to what I had to say about Karen and how she was feeling. To me the sign of an excellent care giver is when they realize they don't have all of the answers all of time. Sometimes it comes down to listening. There is a reason Barnes is a world class hospital. They hire world class employees who dedicate themselves to excellence. Thank you so much. You will always be in our hearts and in our minds. The good lord blessed us with miracle makers.

I also want to thank all of you for your thoughts, prayers, and support (meals/doations/gift cards). Each one of you have your own burdens to deal with and yet you took the time away from your own family to help my family. Without your support I don't know how we would have survived. Your love and generosity will never ever be forgotten. You will always be part of our family.

I also want to thank our families and neighbors for stepping up and helping when we needed it even if it was at the last minute, you were always there to help. Our neighbors were always there to help with Kiersten, whether it was getting her off of the bus, taking and staying for Kiki's gymnasics or volleyball or just letting her hang out with you until Morgan came home.

I want to thank my son Patrick for giving up his college life of studying and spending long hours at the library to come home and giving Morgan a rest with taking care of Kiersten. I especially want to thank my daughter Morgan for taking on the surrogate parent role that was placed upon her. There were some moments when she wanted her life back, but in the end she stepped up and let me take care of her mother. I love both of you so much.

Well it's day #70 and we're home and out of the hospital, but the recovery continues tomorrow morning back at Barnes for reoccurring tests and rehab everyday except Sat and Sun for the next three months. THE JOURNEY CONTINUES..........................................
I don't know what magic powers my pompoms still possess, but if you need them I'll be there.
PEACE, I'M OUT OF HERE!!!!

Update from Mike 3/23

When is enough, enough. I'm sorry, I'm in a self pity mode right now.
Karen is doing better, but tonight she was having difficulty breathing after they downsized her trache. She made it 4 days w/o the ventilator so they downsized her trache and capped it. For the first time since Jan 20 Karen was breathing on her own. However her sats dropped so they had to hook some oxygen back up to it. They are going to try for an hour off oxygen and then back on for an hour. They'll w...ork on trying to extend her time off of the oxygen as long her sats don't drop.
My dad is having heart surgery on Thurs at Barnes, and might be just across the hall from Karen.
Then tonight, Kiersten during PSR class at Holy Infant, had a pretty significant seizure. Of course it had to be in the middle of class with everyone watching as she then urinated all over herself and the floor so I had to race to go get her. She's wiped laying next to me. Nice! She never gets asked to play with any of the girls at school or go to any birthday parties and I don't think this will improve her chances. Kiersten is a good girl and right now my heart is breaking.
You know what's really troubling me, is that there are millions of people that have it worse than us and for that I'm sorry that I'm complaining.

Fundraiser

Please see below for a fundraiser dinner - it will be very simple - just dinner and a raffle- but a fun way to support the family!

http://www.signupgenius.com/index.cfm?go=s.signup&useFullSite=true&URLID=10C0D49A5A62DABF58-support

Update from Mike 3/7

The Road to Recovery. Day 47
Well it's been another fantastic rollercoaster ride this week. Sorry I didn't get it out to all of you sooner, but it has been quite frustrating. Physical therapy continued to shine for Karen. She currently is doing 30 minutes on the treadmill with only 2 rests. The amount of time Karen rests has gotten shorter and shorter with each passing week while her speed has increased. Her afternoon PT continues to improve as Karen cruises around the floor. I swear I saw smoke coming off the bottom of her special hospital socks. As a matter of fact, due to Karen's antics with her special push cart
and zooming around the halls, they now have speed limit and fines doubled signs posted in the halls.
Karen had three episodes this week with her heart going haywire. Her heart rate elevated high enough to bring nurses and doctors in to hook Karen up to an EKG to monitor her heart. She was in Afib again so they gave her medicine to bring her heart rate down and get her back into sinus rhythm. The first episode this week was caused by the medicine she was taking to keep her heart in normal rhythm. The medicine works, but it levels have to stay within a very tight window. Above or below the necessary level can send the heart into a situation that the medicine is suppose to prevent. On Tuesday, Karen was in and out of Afib from early morning into late afternoon before they were able to get Karen to stay in sinus rhythm. The third time this week was on Thursday and I have to say it was one of the most frustrating and depressing. Physical therapy has been the only consistently positive part of Karen's rehab. However, in the middle of Karen's treadmill session her heart started racing once again. What the heck! Great. The one positive has now been hit negatively.
The other area of concern lately has been Karen's CO2 intake. She is taking in too much CO2 which is also not healthy. As the day goes on Karen starts getting headaches which is a sign of excessive CO2. Every time Karen gets to 48 hours off of the ventilator things start malfunctiong. Her heart, CO2 intake, diarrhea, and headaches start acting up, so Karen has to be placed back on the ventilator, which is a step backwards. I don't think we'll ever get out of here.
The doctor doesn't know why Karen's CO2 and heart issues contiue to cause problems especially after 48 hours of breathing without the ventilator. Every day Karen goes back on the ventilator that's more time we'll have to stay in the hospital.
Friday night we had some more tremendous excitement. Kiersten had seizures while Morgan was getting a car wash. So I high tailed it home. Morgan did a great job with Kiersten during her seizures remaining calm and doing what we've taught her. Great job Morgan! What more can happen.
Karen has started to nibble on food which is a positive sign, although this morning she was throwing up again. We brought her Chick-fil-A, her favorite this afternoon and she ate all of the nggets. Today she looked better than I have seen her look in a long time, so much that we took her on a wheelchair ride outside in the beautiful weather. Karen was so excited to get out of the hospital and breathe some fresh air outside with her brand new lungs. You should have seen the look on her face right when we stepped outside for the first time. Priceless!!
Hopefully we can get off of this ventilator. This week they are going to do a sleep study to see if the raised CO2 levels are due to sleep Apnea. Well plugging along!
Continued thanks for everyone's positive thoughts and prayers. Once again, thank you for the meals, cards, and donations. Without them I don't know where we would be!!

Update from Mike 2/28

Saturday 2/28
The Road to Recovery. Day 40
The rollercoaster continues. Physical therapy continues to go well. We now have two therapy sessions a day and Karen just keeps moving along.
After our trip through psychedelic CO2 world and the 60s and 70s on Tuesday, Karen had a bronchoscopy downstairs to see how her lungs were looking inside. Her Dr was hearing a rattle on Karen's left side and Karen was still complaining about having shortness of breath, so he wanted to check it out. The Dr told me I could stay in and watch as long as I wasn't squeamish. It was incredible to see the anatomy of Karen's new lungs again. The Dr was very happy with what he saw. He said the lungs looked incredible. They also took 7 biopsies of different sections of her lungs.
The next day, results were very positive about her bronchoscopy and the biopsies. Everything was normal and looked great although the Dr had no answers as to why Karen continues to complain about shortness of breath.
Thursday they did a breathing study and found out her diaphragm on her left side isn't working properly. It's not letting Karen fully inflate her lung on the left side. They also found out that she's getting too much CO2 into into her bloodstream. It could be that the CO2 isn't be pushed out of her lung on the left side, so it just sits there and gets absorbed into her bloodstream. So they have to cut back again on her ween from the ventilator. She's off of the ventilator during the day, but needs to be back on it during the night time. They also found out she has an infection that they are doubling the antibiotic on to get that under control quickly.
The speech therapist came in and brought a voice piece that goes onto the end of her trache tube that then forces air upward causing her vocal chords to vibrate and walla, we have verbal communication Houston. (Sorry) Karen looked the best she has in a while. Definitely more with it and coherent..
Thursday night we celebrated Karen's Birthday for the second year in a row in the hospital. One of Karen's best friends Suzanne Meldrum and her daughter Cassie started the celebration. Then Karen's mom and dad, her brother Brian and his wife Christy took part in celebration #2. Then Morgan, Patrick, Kiersten, and I, along with our very good friend Judy Mundle took care of celebration #3. My sister Robyn, surprised Karen with two dozen of the biggest and ripest chocolate covered strawberries that everyone thoroughly enjoyed.
Friday the nurse pulled out her feeding tube with the idea of starving Karen enough to heighten her appetite forcing her to eat. Karen was looking better than she had in weeks. Later Friday, I left to pick Kiersten up because we were given tickets to Frozen, Disney on Ice, by a very thoughtful family from Kiersten's school. We had a very good time, however Karen had some difficulty at the hospital. My sister Patty offered to stay with Katen Friday night so Kiersten, Patrick, and I could go to Disney on Ice. Well during the night the alarms on the ventilator started going off. Karen's sats plummered so the nurse came in to check things out. They wound up replacing the ventilator thinking it was defected. The second one started going off as well and this time 4 nurses and a doctor came in and worked with Karen to bring her heart beat down from 190. They did an EKG and it showed Karen in A fib again just like 3 wks ago. They were able to get her back into sinus rhythm again and found out the medicine that they were giving her to keep her heart in sinus rhythm was now putting her into A fib. The levels of the medicine in Karen's body had risen causing her to go into A fib. Everything finally calmed down and she rested.
Saturday, she was pretty wiped out so she rested most of the day. I had promised Kiersten a sleepover 3wks ago with one of her best friends so I was going to have to leave her by herself for the first time in 6wks and it was killing me, but with the weather I was not going to ask anyone to come down and stay with Karen. The weather was getting bad so we had to leave about 5pm. I felt horrible leaving her because I could see she was a little bothered. I checked with her nurse throughout the night and he told me Karen slept just about the whole time. Still not eating. I use to really like rollercoasters. Right now I think they really suck.
As always I can't say it enough. Thank you so much for all of your support. Please keep Karen in your thoughts and prayers.