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.