Steve's Journal

Steven is home!

After a slow & lovely chauffeur ride home, Steven has settled into his Lazy Boy chair to binge TV! 

Now begins phase 2 of his recovery. Slowly, ever so slowly he has to regain his strength! In my opinion, he is off to a stronger start than 11 years ago. He is more mobile and having less pain. That is not to say he won't have hurdles as we move forward, but his foundation is more solid. 

Time to buckle up and get started....
tomorrow!

Woo hoo! Steven is getting released today!! 

He is no longer bloated and has been cleared to eat regular food! He was very happy with this Jersey Mike's number 7 for lunch today! 

We are not sure when he will get released, but he will be in his own bed tonight!! Yay!

My day at Kaiser Sunset is coming to a close and I feel like a can leave with a happier husband. 

First, the jokes, memes, etc. were great! We got some good laughs and then we laughed some more because we were laughing. This is a very different end to the way this day has started. Thank you!!

Steven did some unflattering procedures today to relieve the pressure in his bowels. I do not need to go into detail here. I am sure you all can figure it out. (Plus, it's dinner time!) These procedures seem to have helped. We have had some significant "releases" as of late! Yay! I never thought I would be cheering for these, but to see the smile on Steven's face afterwards makes it all worth it. (No, that does not change the policy we have at home about these "releases", Steven & Conor!)

Our nurse today, Thess, was the same as yesterday and she is a doll! Not sure if she will be on tomorrow, but we appreciate the love and patience she has shown Steven when has been so uncomfortable. 

Thank you all! The jokes have been helpful! I have witnessed some good giggles, but, unfortunately, I haven't caught them on camera, yet...!

Steve's current situation is a waiting game. His intestines need to kick back in after his surgery. They are giving him medicine to help with the process. He is also walking more and hopefully that will help. He took 3 laps around the ward in one jaunt!! Woo hoo!!

He won't be released until this is cleared up, so not today. There is a small chance that he could be released tomorrow. Fingers crossed!

Happy Tuesday! Unfortunately, Steven is still feeling yucky (that is the medical term - I researched it). He is bloated, nauseous, and cramping. Like I said, yucky! 

The Metroprolol has kept his hear rate down which is excellent. 

The CT scan shows that there is no more blockage, but he most likely has something called ileus. It can be a result of surgery. It is basically a build up of gas that is stuck. I missed the visit from his PA, but I haven't missed the doctor's visit. When the doctor is here, then we will come up with a plan of attack. 

Steven is incredibly frustrated of the situation. He isn't having any issues with his heart. Yes, he is still very sore and doesn't have a ton of energy, but his heart is on the mend. The ileus has kicked his legs out from underneath him and he is having trouble keeping his spirits up. 

So, people, I am sending a request - I need jokes. He needs a distraction. Please post any and all jokes here. My kids say I am not funny so I need help to lift Steven emotionally with some laughter. He has done this for me, more times that I can count. I need to return the favor!

The day is coming to a close and there has been a few changes. His heart rate has gone down. It is hovering in the 80-85 region. This change happened after he was given his dose of heart rate medicine. He has had about a liter of IV fluid. He is still waiting on the CT scan. That was supposed to happen at 6:30... He is still bloated and uncomfortable. He did another walk around the ward with Max as is chaperone. That is about all for the day. We won't have the results of the CT scan until tomorrow since it is already so late. 

Until tomorrow! 

It has been a busy hour. 

The doctor came in and thinks that he is doing well considering the given challenges. 

He ordered fluids through an IV to see if that helps with his heart rate and possibly the obstruction. He has also ordered a CT scan to look over his bowels. It is possible that the heart rate and the bowel obstruction could be linked. His body his working on the bowel obstruction. He has not had a solid movement and so he could be dehydrated causing the heart rate increase. He has also been put on a clear liquid diet as well.

PT just came in to work on stairs with Steven. He killed it. He did start to feel lightheaded afterwards and so has returned to bed. 

The doctor is still happy with Steven's progress. He told him he is not dying. "I will send you an email if you are!" We got a good laugh from that!

Steven hit another snag today. This morning, around 1 AM, his heart rate went up to 112/ 113. It has been there ever since. He still has the bowel obstruction as well. These two issues have made him uncomfortable and very frustrated. The PA came earlier this morning and does not think he will be released today. We are waiting on the doctor's visit. Once we see the doctor, we will have more information. 

Unfortunately, it looks like Steven's stay will be extended until tomorrow. The doctors visited and saw that his bowels were full of air. They took another x-ray and saw that there was some blockage. He was given a variety of, what will hopefully be, remedies to this uncomfortable situation. 

Steven is rather disappointed about this development. He has been doing so well in his recovery and this setback kind of kicked his legs out from underneath him. He has forgotten that his recovery is not a straight line, but more of a zig zag. His competitive nature pushes him forward, but there is no winning in this scenario. You can't be "first" in recovering from open heart surgery. He has to slow down and increase his patience in preparation for the bumps in the road.

It is tricky because from the outside observer he looks great! If you were just looking at his face and the pictures we have taken over the last couple of days, you would never know that he had his chest cracked open 5 days ago. What those pictures do not show are his "zipper" or the sutures of where the chest tubes were or the pic line in his left arm or the scabbed over holes in his neck where another variety of tubes were inserted. He does not REALLY see these as well. Eventually, he will see these reminders as badges of his courage, as his willingness to endure pain in order to live his life to the fullest, with joy and happiness with few physical restrictions.  

We have a few signs hanging in his room. Once is drawn by one of Max's buddies, Tyler W., who is a gifted artist. His art is a reminder for Steven to stay strong. Thank you, Tyler! The other sign is one given to us by our dear friend, Dena. It is a reference to Ted Lasso's "Believe" in the face of challenges. We are huge Ted Lasso fans and this keeps Steven believing and puts a smile on his face! 

Happy Sunday! 

It has been a bit of a rough Saturday night/ Sunday morning. Steven started to feel bloated again and was very uncomfortable. He has been up since 3:00 AM. While his night nurse was incredibly sweet, she wasn't steering the ship, so to speak. She kept asking Steven what he wanted and he didn't know. This was not his area of expertise and he wanted some direction/ guidance. He took an aggressive measure to relieve the discomfort, but to no avail. 

His current nurse, Alina, is fantastic. She is taking charge and making decisions that she believes will help Steven feel better. 

He has walked, eaten breakfast, and I am pushing water (my friend, Ariel, calls me the water Nazi). There has been some more activity as of late, but not quite enough. He is concerned that the doctor's won't release him if he is feeling this way. The doctor's are currently making rounds so we will know if a few hours. 

Another busy day!

He had his second walk of the day and it has memorialized below. I washed his hair with this cool shower cap thing again - memorialized above. The last big thing was the last chest tube was removed!! Woo hoo! This most likely means he will be released tomorrow! Let's just say that happy tears were shed by me!

Good morning! Happy Saturday!

Steve is a new man this morning! He had some significant "movement" last night and this morning which has provided an incredible amount of physical relief. As Steve says, "It was epic!" 

Steve's nurse took the bandages off and gave him a sponge bath. (Gentlemen - no virtual high fives for Steve. His nurse at the time was Warren!) He also brushed his teeth this morning. Like a said, a new man!

Steve's recovery is moving in the right direction. He had a walk this morning and will take another one shortly. His spirits are good! 

Fingers crossed that the day will continue on this trajectory. My morning started with my latte. I am taking it as a good sign!

Day 3 is coming to a close. 

Steve did another lap around the ward. This one was a bit slower, but after a lot of getting up and down today he is pretty sore and tired. One of Steve's chest tubes was removed today. That was big! Steven was not looking forward to that, and that has also caused a great deal of discomfort. However, it is out! 

We have been truly blessed with the staff here at Kaiser Sunset. JJ, Steve's current nurse, is incredibly kind. He also has pretty good sense of humor. He is just as invested as we are in Steven's "second movement"! We also got a visit today from Kaiser administration asking us our opinion about the facility. They are truly invested in making a patient's stay as positive as possible. The patient's food needs some work, but the overall experience has been good. As Steve likes to say, "We are a Kaiser family!"

Day 3 & April Fool's Day is upon us and Steven has done more in the last 5 hours than most people do in a day. 

He has been up since 5:00. He finished his Wordle for the day (5/6 - not his best showing, but we will give him a break...). He has already taken two laps around the ward more than doubling is 100 feet from yesterday. He sat in a chair for about an hour and has sat on the "throne" 5-7 times (working on "that" second movement - see Day 2 post if you REALLY need more information). 

He looks great on his walks - he is not strolling or sashaying yet, but he is moving at a pretty fast clip! He greets all the nurses and doctors has he passes by and they are all impressed at how well he is doing. 

The hard part is getting in and out of bed. That is the most uncomfortable and it takes a lot out of him especially this last time where he had to get into bed more unassisted. These moments are important for him to do so he can continue to make progress, but they take a lot out of him. He gets shaky and has trouble regulating his temperature. Initially, he is very cold and then he gets hot. I do have a vague memory of this happening before. 

The doctors are making their rounds so we will have more information after they see Steven. 

Today was a day of movement for Steven. 

His first movement was walking. With the support of a physical therapist, he walked 100 feet. Now before you roll your eyes at this distance, let's remember that about 21 hours ago he had his chest cracked open! That 100 feet is a marathon for the rest of us! So, roll out the finish line tape and let's cheer on Steven for his 100 feet!

His second movement (no, not "that" movement - we are still waiting on that) was to the step down unit. He is no longer in the cardiac ICU and lots of tubes have been removed, including the tubes in his neck which were very uncomfortable. Thankfully, he and his extra long bed were gently rolled down the hall by his lovely nurse, Michelle, flanked by his current visitors, Max & Johnny. 

It was a big day for the big guy! While the movements were good, they have also tired him out and he is quite sore. But, once again, the love, well wishes, and prayers have all been incredibly powerful. Your support has kept his spirit up, and, in spite of the pain, he continues to be strong!

Day 2 is upon us and so far it is looking to be a good day!

Steve is in his new bed! He has about 6 inches of extra room in this bed. (Insert size joke here!) He is way more comfortable! 

They had him out of his bed sitting in a chair from 7:00 - 9:00 AM. He hit a wall at 9:00 and was back in bed at that time. They want him up and walking in a bit. He will also be moved to the step-down unit later today. Steven said he will be carrying this longer bed on his back to the step-down unit.

The nurses have been incredible. We already knew this from past experiences, but I wanted to state is again. They are taking great care of him!

Woo hoo! Collective sigh of relief!

Steve is out of surgery and all went well! He has a new bovine valve and the aneurysm was repaired without any foreign material. This is great news since the material causes more scar tissue. This could be problematic for future surgeries. Now, that is something we don’t have to worry about!

He will be more alert in a couple hours. A new update then.

In the meantime, we are enjoying a celebratory drink and lunch (like we did the hard work)! Ha ha!

Just got a call from Gladys - she’s my new favorite person! Steven’s surgery is wrapping up! Woo hoo! Rob and Lori have joined the festivities here at Kaiser! Bon Bon & Pops are on the way. Hopefully, we will see the surgeon soon! 

Modern technology is such a trip!

I have been texting with family and friends all morning - getting the message out. One message I got from a long time friend said, "You are such a badass, Anne." I quickly responded with "I wish. Steve is the real badass." Immediately following this response I got a call from Gladys, Steven's nurse. She was calling to tell me that they had started Steven's procedure. I believe her words were "We have opened up Steve's chest and everything looks good." Wow! Technology! She was standing in the room with my husband as he starts this journey!

Truly, he is the real badass. He is courageous and strong - making tough decisions about which valve to have in order to have the quality of life he has worked so hard for. He is the one with his chest open getting this work done, knowing he will do it again in 10-15 years. He is the badass who maintains composure in the face of all this and shows our family such strength despite any fears he was/ is having! He is also the same badass who expresses those fears knowing they don't define him, but make him real! A real human, man, husband, brother, uncle and friend. A real badass!

Good morning!

Well, the day has arrived! We checked in this morning at 5:00 AM after at not so restful night of sleep. (Our neighbor was a chatty Cathy at 1:30 AM. Thankfully, her husband was somewhat non-responsive. That was until he was snoring around 3:00! )

After all the necessary check-ins (name, DOB, today's procedure - definitely want to get this one right), Steven talked to the anesthesiologist and surgeon. The surgery will take 4-6 hours and then recovery another 4-6 hours. 

It will be a long day, but the love and support will buoy us through! Words cannot express how supportive everyone has been. The outpouring of love is humbling! Thank you all again. Please know that I don't have enough words to express the gratitude we have. We know that Steven's medical team is amazing, but we also know that our family and friends (the emotional support team) is even more incredible! 

I will continue to update through when I have more information!

 Anne

It’s GAME TIME!!

Surgery is tomorrow morning. Some quick facts and a timeline:

• 22 years ago I was diagnosed with a leaking aortic heart valve. I was given a 10-20 year time frame before I would need open heart surgery to replace the bicuspid valve (birth defect).
  
  
• 11 years ago had the open heart surgery and they put in a bovine tissue valve.
  
  
• 4 years ago I had an ablation procedure to address atrial flutter which is a type of heart arrhythmia. Around that time, I was told that I also had an Ascending Aortic Aneurysm and would have to stop playing water polo or doing any exercise that would max out my heart.
  
  
• In Feb 2021, in my yearly tests, the valve started to show some significant deterioration and I could definitely feel it via symptoms:  shortness of breath, occasional chest pains, quick to fatigue.
  
  
• Oct/Nov 2021, testing results showed it was time to replace the valve again -- due to calcification, I have severe aortic stenosis. I was told the necessary tests would take about 6 weeks to complete and then the surgery would likely be scheduled approximately 2 months after that.
• One of the tests that is necessary prior to this surgery is an angiogram. In my pre-op Covid test (Dec 27), I tested positive. So that pushed everything back a month.

So, here we are with surgery scheduled tomorrow. So many friends and family have been asking “how are you doing with this?” From the day that they said I would need the surgery until the surgery itself, last time it was 6 weeks. This time it will be 4 ½ months. For the way I am wired, that has been rough. But I am really in a much better mental space this time than last time. Much improved in my ability to cope with that stress.

I am really eager to get in there, get it done and start recovering. A huge incentive for me is that the surgeon said that I could go 100% after recovery. Hoping a 4 year hiatus isn’t too long for water polo and my body can handle the pounding again. I need that in so many ways – fitness, endorphins, self-esteem, camaraderie, purpose. It is food for my soul and I need to get it!

Thank you to so many friends and family who have been giving me love and sending strength. It is a huge help and I am very grateful!

Well, we are back again! Steve's valve lasted 11 years. We found out right before Thanksgiving that it was time to fix the valve. It was almost 11 years ago we found out the first time. As you can see from the picture below, all the boys are grown up (J is 19 and M & C will be 24 on Wednesday)! We are in a very different space this time around. They will be more involved this time and will be the in-house support team, even though M just moved out! Here is the status as of today: Steve's surgery is scheduled for March 30th. It was later than what Steven wanted, but hopefully COVID visitor policy will be less restrictive at this time. He is getting a tissue valve again and his aortic aneurysm will be repaired at the same time. Once he is fully recovered this will allow him to return to playing water polo. Steve is incredibly happy about this development! We are ready! We know what to expect and since he is having the same surgeon as last time, we are completely confident that the surgery will be a success!

As I was driving to work this morning, it kind of hit me. This time last year Steve and I were at the hospital waiting for him to be admitted to surgery. It was the waiting that was the most challenging part of this process (for me). As we were sitting in the waiting room, surrounded by strangers, who were also waiting for their procedure, my mind is processing everything that is about to happen. At no point could I think past the surgery. Now, a year later, it is so far removed from our day to day lives. I knew his year anniversary was coming up because I have been planning a little (very little, Steven) dessert - to memorialize the day. But, beyond that, life has resumed and Steve is doing great. His spirit is up, his energy is up and he is thankful everyday that he picked the tissue valve. He almost has a renewed spirit! I am looking forward to a wonderful and productive 2012! Lastly, I want to reiterate how thankful Steve and I are for everyone\'s support. We are truly blessed to be surrounded by such wonderful family and friends who at any point were willing to step up and lend a hand. Thank you all! Much love to everyone in 2012! XOXOXO Anne

Hard to believe it has only been 3 months since my Jan 20 surgery. It feels like a lifetime ago. Here is a run-down of how I am doing… I said in my 5 week journal that I was working for a couple hours a day and as many as 4 hours. The next week I started going for a full day and so I have been working full-time for 7 weeks now. The first couple of those weeks were difficult relative to stamina. I found a grove at about 10 weeks where I was able to go full time without crashing afterwards. Then I kicked it up a notch and I am back with an 8-10 hour work day with no ill effects. That is a fantastic thing! It is no coincidence that the last journal entry here coincided with the beginning of full-time work. Sitting down and writing a blog is not something that I make time for in normal circumstances. The fact that I stopped at 5 weeks was the beginning of a “return to normalcy” for me. My restrictions at this point are self-imposed. I saw the cardiologist 3 weeks ago and was cleared for exercise. So, I have been walking a lot – couple miles at lunch, a couple miles at Max’s soccer practice or a couple miles in the morning. I am trying to get a couple miles in every day. That is getting the heart pumping but it definitely is nothing like running hard, swimming hard or a water polo scrimmage. I swam for the first time a couple weeks ago and was wiped out after a couple hundred yards. I passed the water polo ball for 5 minutes and then took a couple shots on goal before refereeing my club’s scrimmage for an hour+. Total exhaustion and I paid the price the next day. That is okay though because whenever I start to get back into it I will be exhausted. So the sooner I get that out of the way the sooner I will get into a comfortable regimen. To be able to do that before month 3 was huge for me. At this point, the sternum should be just about “fused” back together. The cardiologist said that the pain I still feel in that area is probably from my nerves being sensitive. When the saw cut through my chest bone, of course it cut through everything else there as well -- including nerves. The nerves will take some time to recover. I haven’t take any pain meds for a while now so when I push it I will pay the price – like dunking on an 8 foot basketball hoop in a game of horse with Johnny. Considering the pain I felt in my chest dunking a basketball a week ago was the same pain I was feeling putting on my shoes a month ago, that is progress. Hopefully it will be gone a month from now. It is all part of the recovery process. Interestingly, I would have thought that I would be back in the pool swimming as soon as the cardiologist said the word “go.” While I have dabbled a little bit, the last month has shown me that I really do not care for “chasing the black line.” I’ll play water polo all day long but lap swimming just doesn’t do it for me. Given my past reluctance to “swim train,” I suppose it should not be a big surprise but I definitely envisioned that I would be chomping at the bit to get in the water even if it was just to swim. Uh…not the case. I’ll continue with some water polo baby steps and hope to be back at a full clip in several months. As I noted before, the decision to put in a tissue valve instead of the metal valve was based on the lifestyle restrictions of the blood-thinner Coumadin. With the metal valve I would have been on Coumadin for the rest of my life. With the tissue valve I had a 3 month course of Coumadin which is now over!! I never saw any adverse side effects of the drug other than possibly fatigue. But fatigue is a hard one to quantify because maybe I am simply tired from work, kids, etc. I remarked to somebody recently that I have been tired since the twins were born 13 years ago – really. So in the last year or so it was hard to determine if fatigue was from a decrease in activity tolerance due to my heart inefficiency. Similarly, I have been asked repeatedly in the last 3 months if I can feel a difference with the new valve in place. Considering I just had a major invasive surgery, at this point I cannot determine whether I can feel a difference due to the new heart valve because my body isn’t at a place yet where I can sustain a high heart rate. I think at 9 or 12 months post-op I should be able to see a difference when playing water polo; but I don’t think I will be able to see much of a difference in the normal course of a day. Lastly, some folks have asked whether this drill has been a perspective-altering, life-changing event. I don’t think so. The way I am wired doesn’t particularly lend itself to sweeping, life-changing epiphanies. I do think that it has been very re-affirming in a positive way. Sometimes we can all lose sight of the positive aspects of our lives – love and support from our family; love and support from our friends; doubts about our own strength and abilities. I think this entire process has driven some very positive perspectives of “who I am” and “what I have” back to my conscious thinking. That is a beautiful silver lining.

I had a checkup today with my cardiologist. I knew she was going to tell me everything looked great -- and that\'s what she said. I went to the appt with an agenda though -- I want to drive again! They told me from the get-go that I would need to wait 6 weeks before I could drive and before I could lift more than 5 pounds. Well, she said I could start lifting more but to be very careful and to not be an idiot about it. That\'s good. But after pleading my case and pleading my case and pleading my case some more, I got denied my driver\'s license. Too much upper body twisting and turning that we take for granted while driving a vehicle. So I\'ve got to wait another week. I have been dabbling for a couple hours at a time with work. Yesterday I was in the office for 4 hours, walked home from lunch and then went to Max\'s soccer game last night. I was feeling pretty good about that. Then today I crashed for most of the day. So....the lesson continues. I\'ve just got to keep on taking it easy and not get down by my lack of stamina. On another note, the 10 inch scar is responding very nicely to some gel called Mederma. Initially I named the scar \"the rat tail\" but I think the gel is really starting to reduce the scar which is pretty cool.

So today’s the first day back at work for Anne. It is always hard for her to go back to teaching after summer vacation and Christmas vacation. I think it is probably tough for her to go back now even after putting up with me for 3 weeks. I will miss her during the days right now but frankly it is a good sign that she is back at work – it means I am taking another positive step in recovery. Other than Anne, the other amazing lady through all of this has been my sister Lori. Along with Maygan and Christina stepping up and handling business at S & R Sport, Lori has been a machine. She was like an extra nurse for me in the hospital – staying late hours to just sit with me or accommodate my whiny needs -- all the while running S & R Sport and a household of four. It is gratifying and inspiring to be surrounded by such overachievers. I am very proud of them and lucky to have them in my life.