Update from Mike 4/7

Karen's surgery went well. Dr. Hawkins, the surgeon, said her gall bladder definitely needed to come out. It was inflamed and filled with stones, but came out easy without any complications. He did say that there is an infection under one of her breasts that was oozing, so he's going to let the vascular people know about it. Im not sure why he couldn't address it, but I'm sure there must be some protocol for the situation. Ill get to see her after 90 minutes in recovery.... Then I'm going to get in my car that's broken and imagine that I'm going on vacation somewhere anywhere before I have to come back to reality. I thank the good Lord once again for giving the doctors and nurses the knowledge and skill to care of Karen. Thank you everyone for hanging in there for us for your thoughts and prayers. So I guess we'll wait for our next challenge.

Update from Mike 4/6

Well the surprises keep on coming. Tomorrow at an undetermined time Karen will be going under the bright lights of the OR to have her gall bladder taken out. They aren't 100% sure that it is the culprit of Karen's severe stomach pain, but due to past history, that is what they believe is causing the problems. The problem with transplant patients on all of the immunosuppressant meds is it's very tough to determine if that's the real problem or only problem. So they'll know for sure when they get in her belly. The good news is they believe her lungs can handle the surgery without any problem. Infection is something they do worry about since Karen is immunosuppressed. So if you have any more good thoughts left, please crank them up for tomorrow. Sorry this seems like a broken record. Thank you for all of your support

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.

Update from Mike 2/18

Our. Road To. Recovery Day 29

First I'd like to thank my Oak Brook Family, parents, students, and faculty, for all of the incredible support through the wonderful cards, meals, gift cards, donations, and your continued thoughts and prayers. It is through all of your love and generosity that has helped us to make it through each day. I especially want to thank the third grade classes, Mrs. Gianino, Mrs. Powell, Mrs. Wolf, and Mrs. Bates, for their creativity and kind words that were expressed in their get well cards that brought a smile to my wife's face. Thank you so much.

Last night Karen's blood test showed that her potassium level was very high so they had to give her a bunch of medicine to counteract her high levels. They had to get the potassium level down because it effect the rhythm of her heart.
They monitored her level throughout the night and were able to bring it back down.

Physical therapy went very well this morning. She is up to thirty minutes now on the treadmill with only three resting times.

Karen has been off of the ventilator now for a total of 14 hours. She still struggles with her confidence a lot gasping for air when she is awake, but is absolutely relaxed when she is asleep. Karen is starting to get some discolored mucus, so they took a sputum culture to make sure there is no infection. She is getting a lot of secretions that is causing her to gag and throw up when she tries to cough them up. Besides her back hurting her a lot, her stomach is really hurting her and making her nauseous. She is taking so much medication, and some of it is extremely hard on the stomach like the anti- rejection meds, that she doesn't want to eat which is making her stomach hurt even more and giving her heartburn. I am trying everything I can think of to try and get her to eat. Putting the meds in her empty stomach becomes a viscous cycle. I know her stomach does hurt, but she has to force herself to eat.

They say it's common for people to lose their appetite. I guess I kept thinking once her lungs became stronger everything else would just fall into place. Right now her lungs are waiting for everything else to work itself out.

Update from Mike 2/14

Thursday/Friday/ Saturday 2/12,13,14
The Road To Recovery Days 24,25, & 26
Sorry for not updating yesterday's status. I fell asleep.
First, I can't say it enough. Thank you again and again to our families and everyone else that have been so supportive to my family in every way during this very difficult time. I am truly humbled by the amount of love and kindness that has been given to my family. Thank you from the bottom of my heart. Most, of all, I want to give my eternal gratitude to the young man who unfortunately lost his life way to early, for signing up to be an organ donor. Without his unselfish act my wife would not be in the situation to begin a whole new life, breathing on her own for the first time in three years. Every day I think of the family that lost their loved one and hope that their mourning gets a little easier with each passing day.
Both Thursday, Friday, and Saturday pretty much mirrored each other. Physical therapy was the same for both days. Karen did four sets with seven minutes for each set, totally 28 minutes. This is the most she has done so far. She also pedaled a floor bike while sitting in the recliner for 20 minutes. Like I've said before, she has been an overachiever on the physical circuit since the beginning.
Breathing, however, has been another issue. Karen's has been meeting her breathing trials of 12 hrs for the past 4 days. Her problem continues to be breathing off of the ventilator when she's awake. She does very well when she's napping/sleeping while off the ventilator.
No problems at all. When she's awake she panics still and hyperventilates for a short time complaining that she can't breathe. She thinks she's not breathing but her numbers have been outstanding and X-rays show that her lungs are functioning perfectly, just like they are suppose to do. Her problem is all mental. When she's awake she goes in and out of these gasping for air episodes thinking she still has those same nasty lungs, but she doesn't have the oxygen hooked up to her anymore so she panics. It's like being underwater with you air running out then racing to the surface to breathe and when you get there you gasp for a breath of air. It's scary when you have been so dependent on something for a very long time when all of a sudden it's taken away from you and then you're told you don't need it anymore. I'm sure the brain is confused. That would confuse me, but I walk around confused any way. That's probably due to college and teaching two classes of kindergarteners. That's a topic for another day.
Right now I'm focused on reinforcing her positive breathing times and trying to get her to eat so she can get that stinking feeding tube out of her nose and small bowel. It goes in as a liquid it's going to come out that way. That would wear the crap out of me. (Sorry I couldn't resist) To go along with that she's taking oxycodone and the rejection medicines which are all hard on the stomach, especially with no food in the belly.
Well I guess I am going to have to break out the moves to go along with the Pom poms. Karen's needing some more Mojo. It might be time for the splits. Not from me, but someone. I'm not stupid. So keep the Mojo flowing. As soon as that brain realizes those lungs are desperately waiting to be unleashed, WATCH OUT! Thank you everyone for caring so much. We couldn't do it without you!

Update from Mike 2/10

Tuesday 2/10
Road To Recovery. Day 22
Every day up till today we knew what the plan of the day was going to be and the goal that Karen would be trying to meet. This really helped me to get Karen ready for the next day. Karen knew what the goal was instead of having a bomb dropped on her at the last minute. ...
6:00am we were awakened to find out she was to be taken off of the ventilator at 6:30 and begin her breathing trial. Needless to say Karen became very anxious and struggled right from the beginning. She hadn't struggled like this in the beginning of her trial since last week. It was really difficult to watch her struggle when she had been doing so well. All we needed was to be included like we had been for the last 3 weeks. The new doctor had a different philosophy. But I don't want to focus on the negative because this day belonged to my wife. It was one the gutsiest and most courageous experiences I have ever witnessed from Karen.

After an hour and fifteen minutes Karen took a break from her breathing trial and went to physical therapy. She again did twenty minutes on the treadmill, but only took two breaks this time instead of four. From here Karen came back to the room for a little rest before she continued her breathing trial. We also had some time to focus on not letting the negatives of the morning dictate what her performance would be for the rest of the day.
10:50 Karen was taken back off of the ventilator and continued her breathing trial. As hour after hour past, Karen began hurting in her chest and having episodes with shortness of breath as well as anxiety that was plaguing Karen. But I kept changing her focus away from the clock and her pains to things she will be doing with her new young lungs. We talked about the donor and his family. She would doze off for a while and then come right back into reality. We talked about things she wants to do that she couldn't do before and places she wants to visit. She continued to fight through the anxiety and pain. There many times she wanted me to call for the respiratory therapist to put her back on the ventilator, but she had come too far to quit. The longest she had ever gone without the ventilator was six hours and fifty minutes. Well today our girl(the beast) met the goal they wanted her to reach by the end of the day. Karen went twelve hours and ten minutes today and she was going to quit somewhere between 20 -50 times. I am so proud of Karen for hanging in time
Thank you everyone for your positive thoughts. We could not have made it without all of you.
Thank you. Karen I am so proud of you!!!

Update from Mike 2/9

Our Road To Recovery Day 21

Today started as usual, a date with the treadmill at 8:30 sharp. Karen is becoming a rock star with the physical therapist. Karen has really become much more confident with every step. She is so much more sure footed and her pace has improved 100%. Her rest time between sets has declined during her twenty minutes on the treadmill.

Karen's breathing trial goal for the day was 8 hours. She reached her goal of 6 hours the last two days, but it was a struggle for each of them. So today's 8 hours was a little worrisome, but Karen knows the only way out of here is to keep battling and improving everyday. The first 4 hours went pretty smoothly without and any major struggling on her part to breathe while also keeping her numbers up. For the third day in a row Karen made six hours on her own off of the ventilator. Now we were in unchartered territory. Her breathing became much more labored and brought along with it pain in her chest. Karen started taking deeper breaths which put more pressure on her chest cavity thus pushing against where her chest was cut open from one side to the other. She began to have more difficulty with every minute, but she battled through the pain for each minute. At 6 hours and fifty minutes the respiratory therapist saw that Karen was really laboring to breathe so he put Karen back on the ventilator. Karen was disappointed that she didn't reach the goal the doctor's wanted her to reach for the day, but as I pointed out to her, she did not fail. She went fifty minutes longer today and that is a success not a failure. Small steps will lead to big ones. Great job Karen!

Update from Mike, 2/5

Thursday 2/5
Tough Day!
Well our road to recovery started early at 6am this morning. The respiratory therapist came in and took Karen off of the ventilator and away we went. We only got about 2hrs sleep, so I was a little worried as to how our breathing session would go. Plus the doctors were expecting Karen to go 6 hrs today off of the ventilator breathing on her own. Trepidation consumed my mind since Karen had only gone 2hrs off of the ventilator so far and now she was being expected to go 3 times as much this morning.
Right from the beginning Karen was having difficulty breathing on her own. She was complaining of her chest hurting and not being able to breathe. All of her numbers were saying just the opposite. They showed that she was breathing just fine yet Karen was in pain and gasping for air. She struggled through the first two hours with me encouraging and pushing her. During the third hour Karen wanted to quit, but the doctors told her she had to keep going. I was between a rock and a hard place because I need to be Karen's advocate with the doctors yet I also know she has to be pushed. Karen was in a great deal of pain, but I wasn't letting her quit which made her even more upset and mad at me. Then her numbers started dropping and the alarms began going off. The nurses had to come in and give her assistance since she was struggling so much. For t first time I found myself really wondering whether Karen was ever going to be able to get off of the ventilator. It was a very difficult time watching the respiratory therapist put Karen back on the ventilator. The goal was 6 hrs and we just made 3. The way things are going I don't see us going past 3 hrs. My Pom poms had no magic in them today and I failed to help Karen reach her goal.
One of the doctors came in to talk to us about Karen's situation. She is still in training and always comes in every day with the lead doctor, but never really talked. She saw how upset both of us were in not reaching the goal and how depressed we were with 3 hr struggle. She told us that she is going to be changing the plans for Karen coming off the ventilator. She is going to slow things down a little because she doesn't want Karen to get so upset when she is attempting to come off of the ventilator because she wants Karen to always see success thus building confidence within herself. They are always going to be progressing every day, but in smaller steps. I'm still worried about Karen getting off the ventilator and getting to go home because the way things are going right now, that's not going to happen for some time. I tried to tell the doctors that Karen needed different a different plan. They were pushing her so hard because Karen had been soaring through the physical therapy objectives so quickly, they figured the respiratory part of getting Karen off the ventilator would follow right along. Well they were wrong and they surprisingly admitted it. So tomorrow we will try to go from 3hrs to 4 hrs. So keep your fingers crossed for a successful session. We have to get off the respirator.

Update from Mike (Tues/Weds 2/3-4)

Tuesday

 Karen kept moving forward on her road to recovery. Her physical therapy continues to improve everyday. Today Karen made it up to 17 minutes on the treadmill, stopping at times to rest. This is the most she's done post surgery. In Karen's attempt to get off of the ventilator, she was aiming for two minutes breathing on her own. She worked very hard to reach her goal of two hours breathing on her own, but she fell thirty minutes short because her chest started hurting. The respiratory therapist assured her that she was fine, but he decided that it was best to not push things due to her recent heart issues. She is still backwards with her sleep cycle. She has to work so hard in the morning and into the afternoon that she crashes the rest of the day and then we don't sleep at night. I won't go to sleep until she does.

Wednesday

This morning our road to recovery continued. We started the day striving for a successful 2 hr hiatus from the ventilator. I put on my cheerleader outfit, which I might say I look pretty hot in, and kept Karen focusing on her goal. Her numbers were great, but Karen feels like she's not breathing so she gets very anxious and upset. She continued to focus on her goal of 2hrs even though she was very scared. We played cards and watched rerun episodes of The Big Bang Theory and suddenly our two hours were up. She took a short break and then she was back in the hands of the physical therapists. It was treadmill time. Karen did 4 sets of 5 minutes for a total of 20 minutes which is the most she's done so far and without any heart issues. But her day was not done. The doctors came in and decided that Karen needed to try and crank out another 2hrs of breathing without the ventilator. Karen thought she was done so I don't have to tell you the kind of look she gave to the doctors. If looks could kill, AEDs were needed for all four.
So Karen rested for a bit and I fluffed up my pom poms and we started the timer. She got through the first hour and set her sites on the second. I won't lie, the second hour was a tremendous struggle. She was exhausted but hung in there and finished her objective. Finally she could rest.

Please send positive thoughts our way because tomorrow morning at 6:30 we start all over again except we'll be shooting for 6 minutes tomorrow. I knew Karen's recovery would be very difficult with ups and downs. I just wish I could jump into her body just for the recovery mind you and do it for her. It's a very helpless feeling. Again I want to thank everyone for all of their support. Thank you for the get well cards, gift cards, meal tickets for the hospital, meals for Morgan, Patrick, and Kiersten, your prayers and also for the many donations that have been given. I know we're not finished with this journey, but without the support from all of you and so many others, we could not have even hoped to be where we are today. Thank you from the bottom of my heart!

Update from Mike, 2/2

After a long night and morning, Karen's heart settled back into normal sinus rhythm at about 5:30am. Finally I felt comfortable enough to get some sleep. Thank you to Matt our nurse, who our daughter Morgan thought was extremely cute, and a very helpful short doctor who I can not pronounce his name. They stayed close by the entire time helping to get Karen's heart beat back to a regular rhythm.

The doctors came by late today, which was great because it gave Karensome time to rest. Well the doctor's attitudes definitely mellowed a little into a more cautious, but still pushy care giver. The objective is still clear and remains the same. Karen has to get off of the ventilator entirely and the longer it takes, the more difficulties present themselves. However, there is a fine line between pushing someone with the focus being on moving forward while also building confidence and achieving success at the same time, versus pushing someone with the only consideration being reaching the final objective. Everyone can not be pushed the same way. They all have the same objective, but they are not all clones of each other. Seeing success while also building confidence seems to me to be the path to take.

So today instead of setting the goal at 8 hrs breathing on her own, they instead set a more realistic goal of one hour, hoping to show Karen that she can do it by herself. After the other day Karen had no confidence in her ability to breathe entirely on her own. If we could get her through the hour. Then she could see that she can be successful. It seemed like the longest hour ever. Karen struggled from the first minute, but there was no way I was going to let her fail. So I was her cheerleader the whole time. Karen successfully made her hour on her own. Great job Karen.

Next she got on the teadmill and walked for a total of 16 minutes, with an occasional stop to rest, which was one minute more than yesterday. Karen was beat the rest of the night, but all in all it was a very very successful day!!!

Update from Mike, 2/1

Today started on a very positive note especially with what happened yesterday. Karen had a swallow study done to see if it would be safe for her to start eating and drinking. She passed with flying colors. So Karen drank some Sierra Mist and chewed on some ice chips. Then she had some chicken noodle soup. You would have thought from the huge smile that emerged acrossed her face that she had just won the lottery.
Evening time came and along with it came ...some changes. Karen was having trouble again with her heart. Her heart and pulse rate have been jumping all over the place. It was up to 180 but they've been giving her medicine to help it. It's lowered it a little, it's now been between 111 and 155 but her blood pressure is 83/54. They are keeping a close eye on her and they keep telling me not to be worried because they see a lot of this behavior in transplant patients due to the trauma the body has taken. They are considering moving her back to the ICU if the meds don't seem to work. The ICU doctor isn't that worried about her condition right now. There is no way I'll be able to sleep tonight with these alarms going off all the time and constantly staring at the monitors every second. The doctor said it's only a little setback. No one said it would be easy.

Update from Morgan 2/1

I'm so incredibly proud of my beautiful mom. She passed her swallow test so now she's able to eat and drink. After a very scary day yesterday she had the strength and courage to push through it. You are my inspiration mom and I can't tell you how many people are here for you and inspired by you. Keep working hard and as much as your body lets you & get better soon. We love and miss you at home! 

 

Update from Mike 1/30

They said it would be like a roller coaster ride after the transplant which we knew from 13 1/2yrs of hospital stays with our angel Kelsey. You never forget, but you do get a little desensitized after a period of time. Well that roller coaster came and smacked us right in the face this afternoon.

Karen went off of the ventilator today again, in the attempt for her to start breathing on her own. After a few minutes she became very agitated and nervous, but she kept plugging away keeping her numbers where they needed to be. At about two hours of breathing on her own, I felt her pulse where I was holding her hand start to elevate. I looked up at the monitor and saw her pulse rate climbing rather fast. Karen didn't look bad, but I buzzed the nursing station to have them check it out. Nobody answered. I rechecked her pulse rate and it had suddenly climbed up to 190 so I buzzed them again. They rushed into the room and I told them that the machine is going haywire or Karen is in a little trouble. Her pulse went up to 210 and more nurses and doctors rushed into the room with a crash cart. They were giving her different medicines and hooked her up to an EKG. The doctor called her situation A Flutter. So it got very crazy and quite a bit scary, especially when they brought the crash cart in the room. It was a little hairy for a while. The female doctor was fantastic during the whole episode. They were all set to move Karen to the ICU when her heart beat went back into sinus rhythm so the tension in the room eased up quite a bit rather quickly. So Karen's condition was back to normal and out of any danger. I think this experience will now change their attitudes a little about how fast they push from here out. I'm looking forward to see the main doctor's face tomorrow morning and wait to hear him say "Maybe I was pushing Karen a little too fast. Well, more years and more hair just vanished from my body. Again thank you everyone for all of your love and support.

Update from Mike, 1/29

Karen picked up right where she left off yesterday. Today she took on the treadmill. She did three reps for three minutes each, resting in between each rep. She was winded, but she gutted each one out for the whole three minutes. Then she sat in the recliner for about six hours today. For the Per de resistance, Karen endured twelve hours of initiating her breathing with the ventilator. She has to initiate the breath and then the ventilator shoots air through t...he trachea tube. She was wiped at hour number ten, but refused to give up. She was not going to settle for anything less than the whole twelve hours today. She is absolutely exhausted after her hard work today, but I hope we have a better night than last night. She could not go to sleep so we were both up all night because I will not go to sleep until she crashes. Keep your fingers crossed for a restful night. Again, thank you everyone for your continued support.

Update from Mike 1/27

Well we didn't get into the new room until after 9 last night and it was probably 10. She was in a lot of pain, but they can't give her any more because it could actuall cause more problems for her. It was after 4 this morning before she was able to get a little sleep. The doctors want her to push herself with the rehab she is going to start. This floor is all about getting them up and moving in trying to strengthen her new lungs and off of the ventilator. The key to everything is being able to get off of the ventilator which is tough when you haven't taken a breath on your own for 3 years. Once she gets off of the ventilator she can really strengthen those new young lungs. We are so so thankful to the young man who lost his life in a motorcycle accident for choosing to be an organ donor. Please continue to keep the young man's family in your thoughts and prayers. I want to also thank each and everyone of you for your incredible support through your thoughts, prayers, encouragement, meals, and donations because we could not get through this without you. Thank you from the bottom of my heart.

Update 1/26; Specific Prayer Requests

Mike sent an update saying it has been a little rough today, and they did a bunch of tests  to try to determine the cause of pain she is experiencing.  However, Mike passed on some good news:

The good news is they are going to move Karen to a different ICU specifically for lung patients. This will be good because it is smaller, less noisy, and specific to her illness.  It is difficult to get a bed in this ICU, so it will be great for Karen to get moved! 

And more great news from Mike: "Today our Rock Star went for another lap and for the icing on the cake, she got up and used the porta-potty!" (I am sure Karen never thought that her using a porta potty would be something we would all celebrate, but yay for Karen!!!)

Please keep the whole family in your prayers. Specifically, please pray that Karen will get some relief from the pain she is experiencing and will be able to sleep comfortably.  Mike said the doctor told him today she probably has at least 3-5 more weeks in the hospital. 

Also, Mike has gotten little to no sleep as he has had to stay strong for Karen and interact with the doctors and nurses (and has been "sleeping" on the floor in a waiting room with no couches), so please pray for his continued strength and health so he can focus on Karen.

 Please also pray for Morgan as she is juggling the huge responsibility of caring for Kiersten and trying to go back to work while at the same time worrying about (and missing) her mama and trying to visit the hospital as much as possible. 

Please pray for Patrick as he goes back to school because we know it is tough for him to be away from his family during this time (but per Dad's orders, he had to focus on school work!). 

Finally, please pray for Kiersten as she deals with a different schedule, having "fill-in" childcare providers, and taking orders from her big sister on top of the normal 4th grade stresses.

Thank you again for everything you have been doing - the McGinnis family truly appreciates all of the prayers and words of support.  They still have a long road ahead, but they are strong and will get through it together and with all of the support of their friends and family!

Update from Mike 1/25

Saturday night and Sunday morning were very difficult and a step backwards Karen had a very hard time breathing and was also in a lot of pain. Her numbers fell throughout the night causing them to raise her oxygen intake. She didn't sleep causing her to be exhausted this morning. She became very anxious which in turn made it difficult for her to relax and take deep breaths. The doctors wanted her epidural taken out so Karen would have less chance of infection. With the epidural out, Karen really became uncomfortable so they had to raise the level of the pain meds they were giving her.

Later in the day it was time for some physical therapy, but she was having none of it. She was hurting so bad and she was also extremely exhausted. I know you might find it hard to believe, but Karen became very stubborn. Karen stubborn? I know right!
Well I had a talk with her and she reluctantly gave in and slowly with the help of the PT and some nurses, got out of bed.

I wish you could have seen our girl. She made a full lap around the entire ICU. Feeling very embarrassed, I had to plead with Karen to slow down because she was going too fast causing my pulse to skyrocket, in trying to keep up with her. The Roadrunner would have been jealous.
Our tough tough girl made the lap without having to stop and sit. It brought tears to my eyes. I am so so proud of you Karen!

Update from Morgan 1/23

I know I had posted an updated on my mom earlier, but deleted it.  Here's an update from my dad:

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Well Karen was doing very very well overnight and this morning so they felt extremely positive about taking the tube out of her mouth and turning off of the ventilator. They never want to take the tube out unless they are 100% sure it's going to stay out. It started out well, but Karen was very anxious about breathing on her own and her numbers started falling. She was struggling to breathe while her blood pressure rose significantly. 

 

 

So they all felt that Karen had to go back on the ventilator to keep her safe. They took a chance that they were very confident with, but it just didn't work. Nonetheless, they will give it some more time. There's a real good chance they might have to perform a tracheostomy. This isn't as bad as it sounds because they'd have the tube out which reduces the chance of infection settling in on her new lungs. Plus it's much easier to suction and she can start physical therapy getting up and moving around which will help strengthen the new lungs. Even though Karen and I were a little disappointed,  some lungs take a little longer to get going 100%. The lungs themselves have been severely traumatized. First they were harvested, moved around before being packed in ice, cut on, manipulated, and probably bruised while being put into Karen.

 

So we were going to have to wait until Monday or Tuesday,  but an OR (Operating Room) team wandered up on the floor and had a little time, so our nurse practitioner told them about Karen. As I finish writing this Karen is getting the tracheostomy right now in her ICU room. That truly is fate. So keep those prayers and positive vibes flowing because they are working. When has anything in the McGinnis household been easy?

My dad meanwhile was downstairs getting a Cardiac Catheter done. Things turned out better than we thought. It turns out he has Aortic Stenosis which we new, but everything else is good. He'll still have to have surgery,  but a new procedure that he can have done will be much easier to do.

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Please keep praying for my beautiful mom!

Look Here for Updates; Ways to Help

The McGinnis family is completely overwhelmed with all of the texts, calls, emails, and offers of support!  Since so many people have been asking for updates and for ways they can help, we thought we would set up this blog so you could find everything in one place. We will try to update it daily!  Also, feel free to leave comments on this blog for Karen and the family as they will be sure to check it often, so I am sure she would love to hear from you!

The surgery went well and she has started the very slow recovery process.  At the end of this post is the latest facebook post update from Mike.

As for ways you can help:

***the links referenced below aren't seen in "mobile view" - if you are looking from your phone click on "view web version" at the bottom of the page and it will bring up the links on the right***

1. Thoughts and Prayers - This is most important to the family and they really appreciate everyone's thoughts and prayers! As noted above, please leave a comment on the blog for Karen to read!

2. Food - On this site is a link for the food calendar. There are no allergies and the only food that is not a favorite for all of them (but some of them do like it) is seafood.

3. Other Gift Cards - If cooking is not your thing, they would always be happy to have gift cards.  The gas costs are piling up as the kids drive back and forth to the hospital.   Grocery store gift cards and gift cards to places like Walmart or Target for household items would also be very much appreciated.

4. Monetary Donations - the GoFundMe site is also linked on the side of this page.  They have recently found out that insurance isn't covering Karen's last hospital visit, which is costing more than $17,000!  Also, they will be eating a lot at the hospital over the next several weeks and that money can add up as well.

--If you would like to donate something but can't get it to their house (or mail it), please let me know and I would be happy to pick it up and deliver it to the family!  stacey.grote@huschblackwell.com

Update from Mike:

"She's ok. They took her off of one pain med causing her to be in a lot of pain. So they have another one she's taking that isn't as strong. They want her to work the lungs more so she is on and off the ventilator. She hasn't been able to do it by herself yet. So they'll keep trying until she can do it by herself.

I know there's joy but also sorrow. We've lost a child and there isn't anything worse than having to bury one. We all need to pray for the family who lost their son. Through his unselfishness he saved the lives of others with his donations.I pray that they will have peace after their grief knowing that their son is still living in the bodies of others. Their son gave life to others. I know he will always be inour minds with every breath Karen takes. He gave us a miracle through the grace of God."