Tom Musgrove - Heart Valve Journal

3717 days ago

• TRUST in your surgeon and his team It is trusting your team that allows you to remain positive. • A POSITIVE ATTITUDE & whatever you need to remain ...Read more

• TRUST in your surgeon and his team It is trusting your team that allows you to remain positive. • A POSITIVE ATTITUDE & whatever you need to remain positive and confident that you are going to have an excellent surgical outcome. In our case, guided visualization and soothing music was very helpful. Others might find that drawing/painting, playing a musical instrument, meditation, prayer, or reading works for them. Whatever it is that enhances your feeling of confidence that your outcome will be successful, TAKE IT WITH YOU. • 2 CELL PHONES & CHARGERS (one for patient, one for caregiver/advocate) It never failed, just when I would leave Thomas' room for a minute, there was a reason he needed to communicate with me at that exact moment. Sometimes it was as simple as "Hey, pick me up some frozen yogurt on your way back, please", and sometimes it was more serious. But each of us having a cell phone came in really handy. • PROPER CLOTHING – comfort above all else During our stay in the hospital Thomas didn't need much. He had packed flannel pajamas, and slippers, but he never wore them in the hospital. Instead, he found the most comfortable thing for him was standard issue surgical scrub bottoms and a T-shirt. No zippers, no elastic, just a drawstring waistband so he could adjust the fit to his needs. The slippers were too much trouble, so he just used the hospital issue socks with the sticky bottoms. • HEALTHY FOOD/SNACKS Because of the anesthesia and all the pain medication, Thomas was either nauseated, or his sense of taste was "off", so there was very little (including the food I brought with us) that he found appetizing. I, on the other hand, was very thankful I had it, especially the first few days when I was rarely out of his room. I found that I would forget to eat because of everything else that was going on, then all of a sudden realize that I needed food. Having something I could grab on the spur of the moment became very important. • NOTE TAKING MATERIAL (pencil and paper, computer, whatever) My reason for wanting to be with Thomas 24/7 after the surgery was to assist him in any way possible so that his recovery would be all it could be. That meant I needed to learn what they wanted accomplished, and how I could assist in accomplishing those things. Well, somehow in the learning process I always managed to forget some aspect of the instructions. I could move his bed up and down to make him more comfortable, but only within how many degrees? He could be turned on his side to make him more comfortable, but only how far over? He could have ice chips, but only how many/session? He could stand by the bed, but only if his pulse stayed above how many beats/minutes? He needed to inspire into the spirometer at least how times/hour? He should be in an upright position at least how many hours/day? He should begin walking the day after surgery, and increase the distance walked each day by how much? He should have the compression socks on when? day?, night?, both? And each day, as Thomas progressed the when, how many, how much, for how long might change; plus there would usually be more things added to the "to do" list. Adding more things to the list was a good thing, because it meant Thomas was recovering and could do more things, but keeping notes really became a necessity! And even with lots of notes, we made mistakes. (Anyone remember me journaling about "Our Rookie Mistake" when we overdosed Thomas on two of his heart rate meds for two and a half days, and his heart rate dropped as low as 45 beats/minute!) Thankfully, none of our mistakes were disastrous. • THROW BLANKET They keep hospital rooms pretty chilly, so since I was staying with Thomas in his room 24/7 to act as nursemaid, with emphasis on "maid", I was glad that I had my own blanket. The hospital had blankets available, but somehow I found having my own "blankey" to be very comforting. Sherry Enjoying the Dance

Tom Musgroveposted a journal

3719 days ago

Prior to arriving at the University of Michigan, Frankel Cardiovascular Center (CVC), we read that many of the best heart surgeons had a "team" they worked ...Read more

Prior to arriving at the University of Michigan, Frankel Cardiovascular Center (CVC), we read that many of the best heart surgeons had a "team" they worked with. We took this to mean a surgery team (surgeon, anesthesiologist, etc.) We now realize it is much more than that. You may have heard the saying, "it takes a village to raise a child", well it also takes a village to repair a heart and ensure a successful recovery. We traveled from California for Thomas' Mitral Valve surgery, and for 14 days, the CVC was our "village". A successful valve surgery was, of course, our number one goal. But once that goal was achieved, we moved on to the recovery phase. And here is where the quality of aftercare became really important. Aftercare is something we really hadn't given much thought to prior to arriving in Michigan. Now we recognize that how well you progress in recovery has everything to do with the quality of your aftercare. I reported in an earlier Journal entry that 12 days post surgery we flew home from Michigan to California. Thomas' recovery was proceeding so well by then that he did not need any "assistance". He walked through the snow, got in and out of cars by himself, and walked from the cab through the airport terminal to our gate without help. In Phoenix our arrival and departure gates were as far apart as they could possibly be, AND, we didn't have a lot of time between flights. Nevertheless, he wanted to walk! He did fantastic and was barely puffing when we got to the departure gate. Why was he able to recover to this degree in such a short amount of time? Well, it wasn't just because he was "lucky", or willing to work harder than anyone else. It was because of the efforts of both Dr. Bolling, and his team of Physician's Assistants, Nurses, Technicians, and support staff at the CVC. Each and every one of these people played a role in his recovery. Over and over these individuals went above and beyond the call of duty. Not only did Dr. Bolling repair Thomas' heart, but the CVC team monitored, encouraged and assisted us through every step, no matter how large or small, of the recovery process. They were never just doing a job, rather they were our "caregivers" and our cheerleaders. As I said, "it takes a village". Be sure you have a great one when you schedule your open heart surgery. Sherry Enjoying the Dance

Tom Musgroveposted a journal

3731 days ago

Thomas is doing great. Monday night (January 27), I had a meltdown. Too much coming at me, too fast; too many things to do; too overwhelming. Got a good 4 ...Read more

Thomas is doing great. Monday night (January 27), I had a meltdown. Too much coming at me, too fast; too many things to do; too overwhelming. Got a good 4 hours sleep, and things were much improved on all fronts the next morning. On Tuesday morning Thomas had the final lines removed from inside his body (the pacemaker leads), so we were no longer tethered to the hospital. It is amazing what a difference that makes. Mentally it was a relief to know that he was now functioning completely on his own. In addition, the number of lines you are hooked up to is directly proportional to how easy or difficult it is to function, how mobile you can be, and how long it takes to perform the routine "activities of daily living. By afternoon they confirmed that he would be released that day and we would be moving to MedInn. As usual, everything is hurry up and wait, but the transition from the hospital back l to MedInn went perfectly. First I transferred all our belongs that had accumulated in the hospital back to the Med Inn and put them away, while they were doing all the paperwork to release him. The recliner had arrived so I rearranged the furniture to be more user-friendly, and got the room set up to our liking. I even had time to go to the gift shop and bought some flowers for our room. Fittingly enough, since we will probably be watching the Super Bowl from here, the vase was in the shape of a football. By the time I got back to the hospital, Thomas was ready to be released. So in the wheelchair he got, and we set off for the MedInn. A quick stop at the hospital pharmacy to pick up all the new Rxs he is on now, and by 6:15p.m. made it to the MedInn. After a few minutes in our room, I wheeled him to the cafeteria, grabbed some food, and returned to our room to eat. Then we needed to organize all those meds (and there are a TON of them) into am and pm weekly pill dispensers. After that we watched TV for a little while, and went to bed. Thomas was able to do all the transfers himself except for in and out of bed where he stills needs a little help. We both said it felt a little surreal, almost like the surgery never happened and we were just on vacation in Ann Arbor. (Except for the giant scar down his chest, the occasional nausea, and the chest pain which he says by occasionally taking a little pain killer, is very manageable.

Tom Musgroveposted a journal

3734 days ago

About midday on Saturday they removed the catheter to Thomas' bladder. That was the first high five. Then we wanted to see him begin urinating on his own ...Read more

About midday on Saturday they removed the catheter to Thomas' bladder. That was the first high five. Then we wanted to see him begin urinating on his own (this is a good indication that his urinary tract is restarted and functioning properly), and this occurred later that same day. Also before leaving ICU they removed the tube in his neck (as opposed to the breathing tube in his throat which came out earlier). This one went directly into his heart. They explained what it was for but I can't remember right now. He was really looking forward to getting that out ASAP so that he would have more options for positioning himself in the bed in order to be more comfortable. That rated a high TEN. If anyone feels it would be helpful to see a photo of this tube, email me and I will send it to you. He was delayed a bit in being able to start walking because every time he stood up he would get nauseated and his blood pressure would drop unacceptably low and they would make him lay back down. Finally, by early evening, he was able to stand and walk a few baby steps, maintaining an acceptable blood pressure, and that is when he was allowed to move to the stepdown unit. Something that I found interesting was the process for getting him weaned off the pacemaker. First I should explain that since Thomas' surgery included a Maze Procedure to hopefully (we won't know for sure for about 6 months) eliminate the episodes of AFib, during surgery Dr. Bolling implanted a temporary pacemaker so that he could artificially maintain Thomas' heart rate at a steady 96 beats per minute. He explained that he wanted to manually regulate the heart rhythm at this relatively high # of bpm. By doing this the heart would not have time between beats to throw in irregular beats and potentially trigger AFib. The goal was to establish the pattern of the heart pumping in regular rhythm via the use of the pacemaker. Then after a period of time using the pacemaker to maintain the rhythm at 96bpm, Thomas would be weaned off the pacemaker and his heart would maintain a regular rhythm on its own. The method used to accomplish this is to gradually reduce the bpm the pacemaker is signaling and observe via the ecg(ekg)?? whether or not the heart maintains a steady rhythm on its own. If it does not, then the pacemaker is adjusted back to the steady 96 bpm until they determine it is time to try again. In Thomas' case, it was not until about 10:00 yesterday morning that his heart was ready to accept the job of maintaining a steady rhythm on its own. That in itself was worth a high five. However, even though it continued beating at a steady RHYTHM (time between beats), it was beating at only a marginally acceptable RATE (# of beats/minute); in Thomas' case only 40-45 bpm. This resulted in a blood flow that was barely enough to keep Thomas from being unacceptably lightheaded. They explained that the longer the heart is stimulated by the pacemaker, the more difficult it is to get it to maintain a steady rhythm on its own, so they wanted to try to let the heart take over the responsibility of regulating rhythm asap. After considering the risks and rewards, and Thomas indicating that the amount of lightheadness was "bearable" they decided to let the heart continue beating on its own at this rate, and see if it would gradually strengthen enough to beat regularly, but at a faster, more acceptable rate. In the meantime, the pacemaker remains in place, set to automatically take over if Thomas' heart rhythm becomes irregular, or the rate drops below an "acceptable" level. And they will continue to carefully monitor both his rhythm, and rate until they are satisfied there is no longer a need for the pacemaker. Good news is that throughout the day the rate was been gradually increasing (currently holding at about 50-55 and Thomas' is no longer feeling lightheaded. In addition, during exercise the bmp increases which at this point is exactly what we want it to do. We are heading in the right direction. Another high five. Finally, for Thomas the best milestone of all was getting the chest cavity drain (2-3/8" tubes) removed. Again I have a photo if anyone is interested. Not sure what determines when this drain can come out, probably has something to do with the volume and/or clarity of drainage coming out of the cavity. But it makes a HUGH difference in your comfort level as well as ease of mobility once these are gone. Generally speaking, once all the above happened, Thomas' quality of life took a big leap forward. The day ended very well, with us accomplishing all the goals we had set for that day. 1) out of bed, sitting in a chair, all day; - check 2) walk in hallway at least 4 times, increasing distance each time; - check - last walk of the day was 400 feet 3) inspire into the spirometer 10x/hour; - check 4) drink 5 oz water/hour; - check 5) eat protein with every meal - check A very good way to end the day. Sherry Taking One Step at a Time, but they are getting bigger with each passing day

Tom Musgroveposted a journal

3734 days ago

Learning as we go. Rule # 1: Hospitals are NOT meant for sleeping. This morning our PA made it quite clear that studies have shown that recovery goes better ...Read more

Learning as we go. Rule # 1: Hospitals are NOT meant for sleeping. This morning our PA made it quite clear that studies have shown that recovery goes better if you are either walking, or sitting up in a chair all day - NOT laying in a bed "resting". For everyday you lay in bed, you loose a week's worth of conditioning. YIKES, already lost 2 weeks worth. And if you think you will sleep at night when you are in bed, think again. During the night you still have meds to take every few hours, vitals to be checked, blood to be drawn, IVs to be flushed; and on and on it goes. Nevertheless, both Thomas and I were able to get some good cat naps in last night, so life was good this morning. Rule #2: No work, no reward. Set daily goals for yourself , write them down, make them YOUR priority, and check them off as you accomplish them. Today our goals are: 1) be out of bed, sitting in a chair, all day; 2) get up out of the chair and walk in hallway at least 4 times, increasing distance each time; 3) inspire into the spirometer 10x/hour; 4) drink 5 oz water/hour; and 5) eat protein with every meal. Rule #3: Work TOGETHER. Everyone has a job to do and the more you work together the more likely it is that those jobs will be accomplished. Sounds simple, right? Well think again. While the doctors have their schedule for accomplishing their tasks, and the nurses have their schedule for accomplishing theirs; both of these can change at a moments notice. What did we expect when we moved into a Cardiovascular Center where priorities change literally "in a heartbeat"; that Thomas was going to be their only patient? So while accomplishing our daily goals may sound like no big deal, it actually is when you are trying to fit them in between the bouts of nausea, and the numerous, ever-changing interactions with our care team. We are learning how to work with our team and how to make the most of every "spare" minute, so that Thomas will be one of those lucky people who recover quickly and completely after open heart surgery. Rule #4 Always expect the unexpected. No matter how well prepared you think you are, the unexpected is always going to sneak up and surprise you. In our case it's the impact nausea was going to have on our recovery plan. We anticipated having to overcome the pain associated with this surgery, we did not anticipate that the post op nausea would be such a challenge. Lots more to report, but all is good news. No more time right now, I'll try to write again tonight but if I don't post for awhile it is only because we are so busy working on recovering😊 Sherry Taking One Step at a Time

Tom Musgroveposted a journal

3737 days ago

Thomas did not sleep well last night. The anxiety is getting a little harder to keep at bay. Good news is that he zipped through the labs and various other ...Read more

Thomas did not sleep well last night. The anxiety is getting a little harder to keep at bay. Good news is that he zipped through the labs and various other pre-op tests this morning. This place operates like a well oiled machine - everything exactly on time. The only little hiccup was that we forgot to bring Thomas' Durable Power of Attorney for Health Care with us, so we had to fill out a new one. That part was easy, but we needed two people to witness his signature, and they couldn't be spouse, family, or anyone employed by the University hospital. There are 35,000 people employed by this hospital! We mentioned our problem to the nurse practitioner that was doing the physical and taking the history. She came back a few minutes later with a husband and wife that were in the waiting room for his post surgery follow-up appointment. She had already explained our situation to them and asked if they would mind helping. Voila, we had our witnesses. Otherwise we would have been walking around the hospital, going up to complete strangers, asking them to sign his DPA. Can we say awkward?? With regard to the sleepless night, I had read somewhere that guided visualization exercises not only help with the stress, but are also proven to aid in the healing process. Thomas is not a great fan of such things, but while he was having his labs done, I went online and downloaded an audio file containing guided visualizations for before surgery. I also went to the Cardiovascular Center's patient information center and they had 2 CDs of a similar nature that I could have on loan. We listened to one this afternoon, and are about to listen to the other one now. Hopefully, they will help him relax and get some much needed sleep. And to jump start his recovery after surgery. Thomas' oldest son, arrived from Denver this evening. It is great to have him here with us for the surgery. We have to be at pre op at 5:30a.m. and then it is just more waiting. I'm really ooking forward to my next journal entry when I can say surgery is over, everything went perfectly, and we are off to recovery! Again, I can't say too often how much we appreciate the support we are receiving from everyone. It isn't possible to have too much love or healing thoughts sent his way right now, and especially tomorrow morning, and we are thankful for each and every single one of them. Love to all, Sherry Taking One Step at A Time

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