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!!!