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.