Cathryn's Journal

Hi everybody. I am so sorry it’s been so long since I posted, and you all have been so supportive and kind, I should have posted sooner. It’s Just been hard with what we have been dealing with. So, I think the last time I posted, Judy had finally been moved out of the ICU into the telemetry (step down) unit. She spent a couple weeks there and I was there most every day. She slowly, slowly, slowwwwwwwly improved every day, until she finally was able to be discharged to a post acute skilled nursing facility just down the street from her home in Ellensburg. She came home by ambulance and my stepdad and I were there to meet her. She has now been there almost a month and has made incredible strides. The physical therapist and speech therapist are amazing and work with Judy every day. She is talking up a storm and is easier to understand every day. She has lots of intact memories from before the surgery and brings them up on her own. Her sense of humor is amazing and she cracks jokes all the time, even about her situation. Her right arm and right leg are strong and she works hard to exercise them. I got her to write her name on a sketch pad last week. Unfortunately her left side is still very very weak so she is still unable to walk, though we are not giving up. She has been working on swallowing and is doing well with ice chips. Friday she will have a barium swallow test at the hospital to evaluate whether she can safely start eating solid food. She understands what has happened to her, and the other day we were talking about her heart surgery and how well it went, and how Dr Lehr fixed her heart just like she wanted, minimally invasive, and he fixed her own valve, so she didn’t have to have a mechanical or cow valve, etc. Judy then said, “I’m so glad I went up him. I wouldn’t have wanted to go to anyone else.” It was so sweet she said that after everything that has happened. He had given me his personal cell # and told me to contact him any time so I texted him what she said and he was really touched. This whole thing has really upset him, I can tell. He just feels awful, although like I told him, “You did your job, you fixed her heart, and did it just like she wanted.”
We are just taking one day at a time and Judy is working very very hard to get stronger and improve to where she can eventually come home. Thanks everybody for your patience and understanding and support. ❤️💕❤️

Hi everybody. I know it’s been a long time since I posted and I feel guilty because you all have been so caring with listening to details about our bad outcome. It is now 3/17. After spending a couple weeks in the step down unit, Judy finally made it back across WA state to a skilled nursing facility just down the road from her house. She is getting good physical rehab and speech rehab and is talking up a storm. She is really cognizant mentally, and although her speech is s little slurred, we can understand her. Her right side continues to be very strong, but her left side is very lacking. 😔 Her heart is doing excellent and continues to heal as planned. Dr. Lehr did exactly what he planned to do and the heart repair went great. Minimally invasive , fixed her own valve so she didn’t have to have a cow valve. I have no fault with him whatsoever, neither does Judy. She even said yesterday on her own, that she was glad she went to him and she wouldn’t have wanted to go to someone else. It’s just kinda hard to deal with this outcome, but as my ex days, we have to deal with the hand we are dealt. Love and prayers to you all ❤️

I wasn’t going to make extra posts but I felt it was important to share that Judy is off the breathing tube, off the ventilator, is awake but very groggy. She’s unable to speak yet because of the tube being in so long but is able to communicate by using her fingers, one finger for no and two fingers for yes. She’s still pretty stable and improving but as they warned me a week ago, her left side is very slow to respond. I visit her every day for 3 -4 hours and each day there is a little bit of improvement. Thank you all so much for all your prayers ❤️

Hello all, I added a very long update to my original post op post. I decided to just continue to add to that one rather than keep starting new threads. Thank you all for all your support and prayers.

I wasn’t sure I was ever going to post here again, especially not until Ginny got through her surgery. But after the kindness and support everyone showed us here, I felt it would be inconsiderate to just disappear. Judy made it through surgery great. Anesthesia went great, surgery went great, they kept me updated throughout. Dr. Lehr repaired Judy’s own mitral valve, with minimally invasive approach, and there was 0 leakage postop. She was taken to the ICU, everything stable, breathing tube out. I was called by both the anesthesiologist and the surgeon, reporting how well everything went. I could hear the elation and pride in their voices. They said she was resting comfortably and they were going to start waking her up. We hung up and of course I called all the family with the good news. About 5 hours later I was called by the ICU doc and surgeon together on speakerphone. After not being able to arouse her after 3 hours they suspected a problem and started testing and it appeared she had suffered a stroke in her right hemisphere. I could hear the concern in their voices when they called me, completely different tone than the jubilant tone post op. Because she was non responsive they were concerned for her airway and decided to intubate her and put her back on the ventilator. It is now Monday and there has really been no change in her neurologic status, CT scans show a fairly sizable stroke and swelling of the brain. They continue to monitor her closely and are doing many tests nonstop but she continues to be unresponsive. I am sorry to have to share this news and I apologize if anyone is upset but I decided it was only fair to share our outcome. I dont blame anyone, the surgeon did exactly what he was supposed to do, fix her valve. The hypothesis is that while being on the bypass machine, a little piece of calcium or plaque broke off and traveled to her brain. This is a known risk of any surgery and Judy knew that going in. Needless to say our family is devastated and trying to deal with this unexpected outcome, since she was such a good candidate for surgery. However she is 82 which in itself is a pretty big risk factor. Her valve was really failing rapidly and the last few days here at the hotel I observed alarming signs of fatigue, confusion, forgetfulness, numb extremities, and when she got down on the floor to do her stretching exercises she had to stop because “her heart felt funny.” Not painful, just funny. We all knew without trying the surgery her time was limited, so we all decided the odds were in her favor to go forward. Unfortunately she drew a lousy hand. I’m not going to go into all the extreme emotion I have been going through, sitting in the hotel room a half mile from her and not being able to go see her because of covid, suffice to say the last 4 days have been the worst of my life. I want to thank you all for your encouragement and support and wish you all well in the future and I’m sorry to share bad news, but I think Mom just drew the short straw and her outcome is rare. God bless you all.

Judy is post surgery and in the ICU!! Surgery went well and the anesthesiologist informed me regularly. I was able to bring Judy into the hospital this morning and accompany her to registration and then to outside the entrance to the Pre-op unit, but then they came and took her and I had to leave 😢. Covid protocols. Let me tell you it was a very long stressful day in the hotel room waiting for phone updates. The anesthesiologist kept me regularly informed, and then Dr. Lehr called me himself postop, to say everything went well. He was able to repair her own valve rather than replace it, and he was able to do it with the minimally invasive approach. The breathing tube is now out and she is starting to wake up. I am hoping to visit her tomorrow if they will let me. Thank you all so much for your encouragement and thoughts and prayers, I think today has been the hardest day of my life so far!!!!

Well, it’s the night before surgery. Judy has drunk half her Gatorade (supposed to finish the other half at 3 am). We have finished the special shower with the special soap, have another special shower to take at 4 am. I’m really glad I am here because the hotel shower controls are wonky and she cant scrub her own back with the special soap. I don’t know how someone would do all this on their own! We are supposed to check in at 5 am Pacific time tomorrow. We have conflicting information about covid restrictions, surgeon’s nurse says basically I have to drop Judy off and leave the premises, which worries me because she is quite hard of hearing, but then the same nurse said I wouldn’t be allowed to accompany her to the pre surgery covid test yesterday, and I was able to go. So we shall see. I know I won’t be able to wait for the whole surgery, I have to go back to the hotel and wait for a phone call. 😳 So trying to be brave and positive but have to admit I am really anxious!

Question for all of you who have completed your surgeries: Judy’s surgery team have given us instructions that for TWO weeks post surgery, she is to sleep in clean pj’s AND fresh sheets every night. I see the clean PJs part, but if she is in clean Pjs nightly, why the sheets too? We really don’t have that many sets of sheets and the washer is very old and not working well. Dr. Lehr is planning on minimally invasive so she shouldn’t have any large incisions (knock on wood). Has anyone else been told this or hear of this before?

And finally, Judy says to tell you all, “it’s so great to see you all doing so great and up and around after surgery, but when do you all find the time to work on your jigsaw puzzles?” Lol 😂😂

I wasn’t going to say anything until it was confirmed, but Mom (Judy) and I are supposed to head back across the state of Washington to Seattle on Tuesday for Judy’s mitral valve surgery at Swedish Heart and Vascular on the 28th. So scared we will get postponed again. Hotel reservations confirmed, car inspected, work leave confirmed, just need to repack. Still hoping for minimally invasive repair. Things can still change with covid and we might get postponed again, we shall see. ❤️❤️❤️To all 💕

Hi all, haven’t been here for a while, since a few weeks ago when my Mom’s mitral valve surgery was cancelled at the last minute due to soaring covid cases and extreme weather caused a staff shortage so extreme that all “non emergency” surgeries were cancelled (after we’d traveled across the state and set up in the hotel). Mom is doing well considering, health wise, but we have no idea when we will get to go back for another try. Seattle area hospitals continue to be overwhelmed and understaffed and there is no end in sight. I have been really struggling with depression from the letdown and disappointment. Still glad to come on here though and see the inspiring stories! Best to you all ❤️

Very disappointing news. My mother’s mitral valve surgery scheduled for Thursday morning has been cancelled. We got the call from the surgeon’s nurse this afternoon, after having driven halfway across the state Monday and checked into the hotel. The reason given is a staffing shortage due to extreme weather and also the recent spike in covid cases. The administration of the hospital feels that they do not have adequate staffing to safely perform surgery and provide adequate post op care. It’s not just her surgeries, others are being cancelled too. The nurse cannot reschedule at this time but thinks we may be able to reschedule in January. We are just devastated after working so hard to safely get to this point and coming so far and spending hundreds of dollars. Plus I had to get FMLA leave approved from my job. We are still in shock. I had planned to be at the hotel for 3 weeks so brought an incredible amount of stuff which I had just got unpacked, and now have to pack everything back up tomorrow and drive back across the state over the Cascade mountains which is quite the harrowing trip. I am thankful they are cancelling rather than put their patients at risk, to be sure, but this is just so hard.

Hello all, finally got a picture uploaded of Mom (Judy) and me. This was yesterday morning as we left rural East Central Washington state for the Big City, Seattle, where Mom’s mitral valve surgery is supposed to happen Dec 30 at Swedish Heart and Vascular. Traversing the Cascade Mountain range here is quite dicey in December and we dealt with some snow and lots of big rigs speeding unsafely but we made it and got settled in our hotel room yesterday afternoon. Today is a day of tests. Meet and greet the surgeon, Dr. Eric Lehr. Patient Education. Ultrasound of the carotid arteries. Lab work and EKG. One snafu we are not happy about is that the abdominal aortic CT scan which was planned for today has to be postponed. Apparently Judy was supposed to have a coronary angiogram before this appointment to rule out any blockages, but no one told us or called to schedule it. Apparently if the coronary angiogram showed blockage then there would have been no point in doing the abdominal aortic CT today because minimally invasive would be off the table & Dr. Lehr would need to reconsider his plan. Because we live half a state away it’s not like we can just run across town to the hospital. SO… we do everything BUT that test today and then we try to get the coronary angiogram done in our home area next week (the week before Christmas, complicating matters more). Then have the abdominal CT done when we come back over here on the 27th. Plus the logistics of at least 2 Pre-op Covid tests in a particular timeframe. As if we weren’t frazzled to begin with!!! I have confidence in the surgeon and the facility, but the communications to us from the care team/schedulers has been disappointing. I think part of it is that we live so far away and they don’t consider travel time. I have to marvel at all of you who have traveled several states by air for your procedures, how on earth did you make all these logistics work? Sorry so long! Thank you for listening. This site is a treasure!

Hi Everyone, I joined this group several weeks ago now on behalf of my 82 year old mom, Judy, who does not have internet and who will be having mitral valve repair/replacement surgery at the end of December. I have a couple questions I'm hoping someone can help us with. 1). Judy is quite thin. She only weighs 105 lbs. (she is about 5'2"). I have suggested to her that she try to gain some weight before the upcoming surgery, comparing it to as if she was about to run a marathon or climb a tall mountain. She's gained about a pound. She also tells me that none of the doctors she has seen (family doc, 2 cardiologists, and a phone consult with the cardiac surgeon) have mentioned any concerns about her weight. My concern is that with the fact she won't be able to eat much the day before and the day of the surgery, plus the physical ordeal of the surgery itself, she will lose weight she can't afford to lose? How soon after the surgery can she eat? Will she feel like eating anything? Should we be concerned about her being too thin? 2) We live in a rural area of Central/Eastern Washington state and will have an approximately 2 hour drive to and from the surgery over a steep mountain pass to Seattle. I have an older Subaru Outback that has both a reclining passenger seat and a rear seat that can be folded down into a flat bed. The car is in good shape overall but it is not the cushiest ride and there will be bumps felt from the highway. Has anyone else had a long drive back from the hospital after surgery? How did it feel? Should she ride in the passenger seat or flat in the back? Should I get extra padding, blankets, etc, for cushioning? What all should we expect? Thank you so much in advance! ~Cathy