Trevor's Journal

The month of June has come and gone, and from my perspective it was extremely productive. I had my one month check up this last Wednesday up in Madison, which was my last meeting with Dr. DeOliveira. From now on, I am free from meeting with a surgeon until this valve calcifies, which we are expecting to be anywhere from 10-15 years from now. But who wants to think that far down the road anyway. Who knows what kind of operation I will actually have then. The weather has been beautiful here in Rockford and I have taken advantage of it. Yesterday was my 1 month anniversary of my surgery and I spent it going to the pool. The scar is healing a lot quicker than what I thought it would, but my surgeon reminded me that the scar is just like new baby\'s skin so it can burn incredibly easy. No problems yet, SPF 30 seems to do the job. I had someone about my age to come up to me and comment that she had a scar just like mine. It\'s fun to meet others who have had the same thing! When I first met Dr. DeOliveira for my initial appointment 1 year ago, one of the things I loved about him is that he always showed me pictures of what he does during surgery. He had always promised me that he would take pictures during my surgery. In my amazement, he printed out 3 great pictures of my diseased aortic valve and my brand new healthy bovine pericardial valve during my surgery. What a difference! I will try somehow to get the pictures on here, but as of right now I only have hard copies of them. A picture says a thousand words but these even go beyond that. What was happening with my own aortic valve was that it wasn\'t closing enough, as you can see in one of the pictures. The edges of the valve were very thick and looked like they didn\'t fit together. A normal, healthy valve should look like tissue paper - very thin with a perfect \"Mercedes-Benz\" logo that fits together without a gap. The edges of a healthy valve are extremely thin and flexible. My valve was \"thick and floppy\". His pictures of my valve will now be showcased in his lectures that he does for the medical school and from what he said, the \"fish mouth\" appearance is a classic textbook case of a bicuspid aortic valve. I hope these pictures can help some future doctors! Although everything has gone very smooth so far, I did have some questions when I went for my appointment. If there has been one thing that I could complain about, it has been a skipping or the feeling of an extra beat every so often. I found out that these are called PAC\'s and PVC\'s, standing for pre-atrial contractions and pre-ventricular contractions. What I am feeling is a PAC, and it is nothing to be too alarmed about. The electrical activity at the top of my heart (the atrias) is still a little bit irritated from surgery, so there is an extra firing from a nerve coming from somewhere else that starts an extra heartbeat. It is of no worry to me since I feel fine and they said that it would go away with time. I guess it also helps to keep your potassium levels up. I want to wish everyone a very happy 4th of July weekend! My biggest interests are in the food eating contests and fireworks. Hope everyone enjoys their weekend!!!

I can\'t believe it but today marks 3 weeks with my new bovine valve. So far, so good except I\'ve noticed I have a new liking for cows. It was a little awkward on Father\'s day eating a steak since I have a new brotherhood with them. The cow jokes never get old for me. Yesterday I went in for my first work out session at the rehab center and I loved it. There is definitely a positive, upbeat attitude in the room because everyone has the same goal in mind of getting their hearts back in shape. After getting hooked up to the monitor, I did 10 minutes on the treadmill and 10 minutes on the recumbent bike. There is a standardized scale that they use to gauge how hard the exercise is which they call the BORG scale. The ideal area of exercise is in the light to somewhat hard region, which I believe is 11-13 on the scale. After the bike I did some cool down laps and then about 10 minutes of stretching. I had a great time. Although most people don\'t see working out as a fun thing to do, this was definitely fun for me. My nurse was telling me that all of the other rehab patients were asking \"what\'s with the young kid?\" while I was working out which I got a good laugh out of. It was only my first day, I\'m willing to bet I\'ll be sharing my story with everyone in there pretty soon. As far as the rest of the recovery process, I am still hanging out in my recliner for most of the day. Luckily I have gotten plenty of good books from friends and family that help pass the time. The Seinfeld DVD\'s that I bought are coming in pretty handy too. I am still reluctant to sleep in my bed yet because my incision is still pretty sore. I just don\'t know if I would be able to shift my body weight enough to get in or out of bed. The good thing is that I have learned how to sleep really good in the recliner. Thanks to everyone who gave me the advice on the recliner vs. bed. If there\'s one thing this process of healing teaches, its patience. I have learned that the body does a good job at telling you if you are doing too much. The recovery process is extremely individual. When looking at the big picture, all that matters is that the progress is going in the right direction.

Hey Everybody! I am 2 weeks post-op today and I am feeling great so far. Today I went in for my initial assessment at the cardiac rehab center. I am very excited about starting this program. It is a really nice place with a lot of equipment and the staff seems so organized. I am in the 4:00 class that meets Monday, Wednesday, and Friday. I am told that this is the class for \"younger\" patients :). I am also meeting with a dietitian to control sodium intake and things like that. It is really cool to put down goals that I would like to accomplish both long term and short term. They will have me doing at least 45 minutes of cardiac exercise by the time I will be going back to school. That is very exciting to me! The cool thing is that I am hooked up to a heart monitor at all times so the nurses can see if my heart rate is too high or too low whenever I am working out. When I first mentioned that I wanted to do a cardiac rehab program to my doctor\'s a while back, they weren\'t too excited for me because they told me that I would be bored with it. The really cool thing about my program is that this is going to be specific to me and my age so that I will go at my pace and progress up to what I used to be able to. All of the staff told me that they have high expectations - I guess they want to get my butt back in to shape! I do have one burning question for my fellow zipper chest friends on here - how long did you sleep in a recliner? I am 2 weeks post-op now and I am still a little stiff to get into bed. I am sleeping great on the recliner, but I was just wondering if I should move to a bed soon. Other than that, things are going great and I am continuing to make good progress!

Yesterday I had my one week check up with my surgeon in Madison. Seemed like such a distant memory walking into the hospital again. I still could not believe that I was done. I met with an NP who got my stitch out of my chest tube incision and also removed the steri strips on my 7 inch scar. I now have little horizontal steri strips holding my incision together, which is looking very good. I gained a little bit of a rash around the chest tube incision which is bothering me. They put me on bactrum for 7 days to clear it up. My bone seems to be healing well with no creaks or cracks. They keep reminding me although I may feel good, there\'s no mistaking that I still have a broken bone. It will take a full 12 weeks to heal the breastbone. Long way to go! I\'ve consistently been doing 5 minute walks throughout the day, and yesterday I even made it outside to walk in my driveway. Other than that, a lot of watching TV and movies to pass the time everyday. The low sodium diet is going very well so far. It really isn\'t that bad because I don\'t have that much of an appetite anyway. I have finally lost all of the fluid that I gained from my hospital stay thanks to the Lasix. Ended up being about 15 lbs of fluid!

I MADE IT!!!!! What an exhausting, frustrating, exciting, and thankful time this last week has been. I have felt sooooo many of everyone\'s prayers and I am confident that is what got me through the surgery. It feels great to be home. No more 4am wake up call from x-ray!!! The doctors at Madison are phenomenal. I guess I didn\'t realize how many residents I would be working with, but I was extremely interested in meeting all of them and hearing their stories. My room was nice and big, but being spoiled in this day in age with HD TV, the television could have been a little bigger :). I had the perfect amount of visitors. Wednesday was an extremely tough day for me so it was good that only my 2 brothers in town came up to see me. I can see progress with the walking which is really cool. I am not going to lie, Tuesday night was hell. They kept bothering me to breathe on my own or the ventilator tube would not come out. All I wanted was more pain medication. I was very comfortable going into the surgery because I kind of had a peace of mind about pain control. I was way wrong when I woke up. They gave me oxycodone which did not work at all. They kept giving me that over and over again until I demanded something better. Finally, at 1:30 am the MD ordered Toradol which is an anti-inflammatory. That seemed to work a little bit, but the pain was aweful. Luckily, that is all behind me. I am still in considerable pain, but it is a little more tolerable. It really hurts to move my arms or back. I have gotten much better and getting up out of chairs, though. I just cannot wait until I will be done with the rehab for this. I want to get back to some basketball right now! :) It is interesting to note my spurts of energy. They are few and far between, but I can see progress everyday which is really cool. I couldn\'t have done this without every single one of you. I had so many prayers coming from all corners of the nation (and Canada too!) that helped me through the first few nights. Until next time, thanks so much again! It feels great to be back. Trev

We have just received word from the nurse that Trevor is going to be discharged today!! The doctor didn\'t make it in(most likely an emergency surgery) but he has reviewed Trevor\'s chart and says he is ready to go home. We have had a visit from the pharmacist; he has a long list of new meds for a while. We will be coming back up next week to see the surgeon. Trevor is tired this a.m. and I know that the trip home will be exhausting for him, but I am VERY upbeat and excited that we can bring Trevor home after only 3 days!! PTL!! His heart monitor is gone and now just an IV to come out and off we go!!! He is sitting up in the recliner in a pair of pjs - no more green gown!! He will take his first shower at home today. Thanks to everyone for your support and prayers this week. We couldn\'t have made it without you!

I was hoping to have Trevor write to you today, but he is VERY tired and isn\'t up to it. He did have a good night of sleep according the nurses. I went to the hotel for some much needed rest, so we both slept well! :) The doctor wants Trevor to walk the halls today 6 different times. He isn\'t thrilled about that but knows it is important. He is napping in the recliner on and off today. That is good...he needs it. He is still in considerable pain and needs pain meds as often as they are allowed He tried to eat some solid food today, but really has no appetite. We know that there will be up days and down days....think that yesterday was so full and busy that today is a bit of \"pay back\". He is receiving an IV with potassium. They weighed him last night - up 10 lbs since Tuesday before surgery. The doctor told Trevor that this is very typical. I am just sitting in the corner of his room today reading a book and letting him rest. Thanks for your continued prayers - we feel them.

As I look back to the beginning of this day (1:00 a.m. and on) I NEVER imagined that Trevor would be where he is now!! Trevor is basically \"wire free\" except for one IV where he is getting meds (Lasix). He has walked around the hallways 3 times today. Although he is tired and naps often, he is talking more and I can tell that his pain is much less because his mood is better. The doctor says that he will most likely be going home on Friday...that is my birthday!!! That will be the BEST present I could ever get from Trevor for my birthday! I am hoping that he will be comfortable enough tonight that I can actually go back to the hotel for some much needed sleep. My husband, Marsh, and I have been catching a few zzz\'z when we can. Marsh has actually found a quiet dark family waiting room down the hall where he can sleep and he\'s taken advantage of that more than once. I am doing fine so far, but admit that the 15 minute naps here and there aren\'t enough. It has been an exhausting day for Trevor with all of the activity, but the rewards are paying off with his excellent progress. Thanks for the many prayers. God is holding us all close and giving us the strength that we need. Trevor will have a short visit from his brothers, Ellen & Jessica tonight. Trent & Martha are coming to Rockford this weekend; Trevor is so excited to see them. More tomorrow.

Trevor\'s chest tube was removed at 12:30 p.m. The nurses are all telling us that he is definitely on the fast track for post op recovery. He is staying strong and doing exactly what he is being told. Not too hungry yet...I suppose the chicken broth and apple juice isn\'t that appetizing anyway! Thanks for your prayers...God is so good.

Trevor had his first stroll down the hallway @ 10:15 a.m. He pushed a wheelchair that carried his chest tube \"bubbler\" and IV\'s. He is going to take another stroll by 12:30 and then his chest tube comes out. YEA! One by one he is losing all of his lines, tubes and machines. He is kind of irritable,(understand why!) but is cooperating because he knows that this is what will help him.Good job Trev!

Thought I would bring everyone up to date on Trevor. He had a rough night...pain meds not helping much. The nurse called the doctor at 1:30 a.m. to get orders for other meds. Trevor was put on an anti-inflammatory and another stronger pain med. The pain is most likely coming from his chest tube. The meds did put him to sleep for a few hours..I really don\'t have much of a sense of time anymore! Doctor came in at 6:00 a.m. and said Trevor is no longer considered an ICU patient. He will not be moved to a different room; the room moves around Trevor. Slowly tubes and lines will be removed. He got up in a chair at 8:00 a.m. Pretty hard, but the nurse keeps encouraging him that it will help him with his pain and his recovery. He ate a very light breakfast - jello, apple juice and LOTS of pills. He is bit \"puffy\" so started him on Lasix and Potassium in addition to other meds. Although he doesn\'t feel like it yet, he is on the road to recovery and we are SO thankful! We feel your prayers.

It is now 8:15 p.m. and I have a few moments to update all of our dear friends. I haven\'t left Trevor\'s side much since mid afternoon. The breathing tube finally came out at 6:00 p.m. Trevor was SO happy to say goodbye to that guy! His swan was also removed...a cath to the heart which monitors blood flow. The surgeon came in for a visit and said that everything is routine - that is good news. Trevor is sipping on ice chips He says that they taste like heaven to him! Trevor has also been receiving potassium through his IV. He started using his spirometer (I think that is what it is called!). This is hard for him, but the nurses are very impressed with his levels. Trevor is in some pain, but he is receiving as many pain meds as he is allowed. They are monitoring the dosage because they don\'t want him to get nauseous. Trevor has asked me to stay tonight with him in his ICU room. I am happy to stay - actually relieved that he wants me to because I want to stay. I will be \"sleeping\" on a recliner. We had a full house at the hospital today - it was wonderful to have such support from our family. In addition to our son, Tyler and Trevor\'s best buddy, Mike, Trevor\'s Grandma Johnson was here, Aunt Cindy, brother Troy and his wife Jessica and our adorable granddaughter, Madilyn, and Tyler\'s fiance, Ellen. What a blessing to have them here with us. Even though our son, Trent lives in Denver, he was here with us through many, many phone calls and text updates. It has been quite a day - a day of answered prayers. Please keep praying for Trevor\'s continued recovery and that everything will continue as routine - just like Dr. D said! Love you all. PTL!!

Hi Everyone. Trevor is still very sleepy...the ventilator won\'t come out until he is more awake. We have all taken turns going in to spend time with Trevor. Although he hasn\'t opened his eyes yet, he is able to understand what we are saying and what is going on by shaking yes or no or a thumbs up. He is now clutching the small guardian angel that his grandma gave him before surgery. God is good. Keep praying that everything continues to improve as the day goes along. We are so thankful for this journal to keep everyone updated. Your prayers are holding us up. More later.

He\'s in recovery. The doctor came in and praise God everything went as he expected! God is so faithful! He\'s sound asleep...and looks great! They\'re going to be taking out the ventilation tube soon, which Trev seemed to have a little anxiety about so keep praying! The rest of the tubes will come out throughout the afternoon...Sherry and Marshall are in there now with him.

It is 11:10 a.m. here and we have just heard that Trevor is off the by-pass machine. Everything is going well. I\'ll keep you all posted as I hear more. Keep praying!

It is 8:30 a.m. central time and we just received word that the surgery is underway and everything is going well. Trevor\'s strength and courage is an inspiration to us all. We feel all of the prayers - we appreciate them more than ever. I will update as I know more.