Chris has made great strides today. After coming off of the vent, he was struggling a bit to breathe so instead of putting him back on the vent, they tried a Bi-PaP machine-it is one of the machines used for sleep apnea. With this machine, he did not have to work so hard to get a breath. Well, when Carolyn and saw Chris at 8:00 tonight he was off of the Bi-PaP machine and on a regular oxygen mask. He was talking quite a bit with me-asking lots of questions. I told him it was good to hear his voice-he said it was good to be heard. He did not make it in to a chair yet-they had him dangle his feet, though. He is sitting fairly upright in bed, able to take sips of water with out help and is just doing really well. The nurses are still having to "chase" his potassium but I keep saying it is nothing new for us. Two of the medications he has been getting through the NG tube (it is gone!) he took orally tonight. His "numbers" are all good and steady-especially his heart rate and his temperature. So. . .all in all it has been a WONDERFUL DAY! I am anxious to see what surprises tomorrow will bring. Take Care. MJ

Carolyn & Reid-I'll buy your "e" and use it in Treats-because that is what we are getting today. Chris came off of the ventilator at 9am this morning. He looks great and is coughing well. Jody, his nurse said she was getting a recliner for Chris because she wants him out of bed. His breathing is sooo much easier than the last time they removed the vent. They are taking out some of the different lines-the ones in his groin so he can move about better. Dr. Puga was in to see Chris and gave a big thumbs up on his progress. He also said they would talk about turning down the Flolan (the medicine in the pump Chris wears) Chris gave a big thumbs up on that. Today will be day of Treats and surprises and hopefully no tricks. Happy Halloween everyone! MJ

We have had a wonderful day. Chris's heart rate is down and in normal sinus. He is in good spirits and they plan on removing the ventilator tomorrow morning as long as things continue to go so well. Chris is very ready to have it out. I must say he has done well communicating-he and Jody, his nurse, talked about the Duvalls and Demarees-the bit of French in his heritage. There is no telling how that come up in conversation but it did. I told Jody that Chris will talk nonstop, (when he feels well) about anything especially if it is history related. It is great to see him in such good spirits. Assuming the vent comes out tomorrow he will be happy about that but then he will have to start working-which I don't think he will like. Keep the good thoughts and prayers coming our way, Chris is over a big hurdle-making it through surgery but now he will have to work to speed his recovery. Take Care. MJ

Greetings from Minnesota!! Chris is ready to have the vent taken out. He keeps trying to get his nurse to give him some water, but he only gets the water soaked swabs with maybe a tiny ice chip on it. He is feeling much better-he wanted me to bring him Sprite or frozen yogurt from McDonald's where Carolyn and I went for lunch. He was a bit disappointed when I didn't. Jody,his nurse, told Chris that when the vent is gone and things sound good he will start on on clear liquids He had some good expressions for that. He is doing very well with his pantomime-I am getting better about understanding him too. He watched two Batman movies this afternoon and has already asked about the TV lineup for tonight. His heart remains in normal sinus rhythm without the external pacemaker so the nurses are pleased. His temperature and his other numbers remain constant. There is a possibility they may try turning down the vent tonight, but it will probably be tomorrow-they don't want to do too many things in one day. Hopefully his heart rate will stay down and in normal sinus. Well Carolyn and I may sneak down to the cafeteria to have frozen yogurt for Chris-it is much better than McDonald's. I do want to say that everyone who has been in Chris's room has commented on the Prayer Quilt-how wonderful it is. It is at the foot of his bed where he can see it. The nurses have all taken time to tie a knot and say a prayer and are very interested in exactly what it is. I take time to explain-some of them have seen prayer shawls and blankets but not a quilt. I'll post again tonight if there are any changes. Take Care. MJ

Things are ever changing here in Rochester. The weather is beautiful-near 60, tomorrow the wind chill will be in the teens! Chris is doing well. He was wide awake when we got here about 8:45-in fact he asked his nurse-Jody- where we were. He's high fever broke during the night, but he still has a bit of one today but not as high. He was still in atrial flutter when we got here so it was decide to see how things were at 10 am. At that time they would make the decision to do cardioversion or not (cardioversion is giving the heart a little shock to get it to convert to normal sinus rhythm) They sedated Chris and did the cardioversion a little after 10. They actually did two shocks. They have the external pacemaker pacing his heart for a little while to try and get it to stay in normal sinus. The nurse said she thought he was in normal sinus on his own without the pacemaker. He is still pretty sedated although he did open his eyes when he heard my voice. Hopefully this will do the trick and then they can start to turn down the vent. Time will tell. I'll post more when I know more. Take Care. MJ

What a great day we have had communicating with Chris. His heart rate remains about 115 and he is still in atrial flutter, but he's awake , moving about and is in good spirits. Chris manages to get me to soak the swabs in cold water for him-on one swab I forgot to test the water before I soaked it-when I put it in his mouth he spit the swab back at me-it was warm water. He has had the TV on -of course since college basketball isn't on he settled for football and even watched the end of a NASCAR race with Tammy, his nurse. They continue to lower one medication, very slowly-he needs to be off of it in order to take him off of the vent again. The vent has been turned down a bit, Chris is taking some breaths on his own. I know it is frustrating for Chris having to "mouth" what he wants to say-I am not the best at reading lips, but we seem to be managing. I have relayed stories I read online from the newspapers at home, shared all of the comments and emails that have been received and we have had some laughs. Today has just been a much better day all around. I don't anticipate any other changes tonight. Hopefully tomorrow he will continue to improve and come off of the vent. I'll post again after I see him in the morning. Take Care MJ
Evening Update-When we left Chris this evening he had a bit more fever-they are hoping Tylenol will take of it. He had been awake most of the evening, we left him watching Desperate Housewives. MJ

What a wonderful morning here in Rochester. We just left Chris and he looks great. He is wide awake and wanting to know what is going on. He asked about the girls, and I updated him on their activities. I told him UK beat Mississippi State in football-he raised his hand in cheer (sorry Don and Kim). He is very animated with his facial expressions and his sense of humor is coming through. He is not in pain, but is tired. He was fine with us returning to the waiting room, knowing that we would see him in about an hour. His numbers are still good, but he no longer has the good p-waves. He is in Atrial Flutter. Pediatric cardiologists have been consulted and they have decided to ease up on some of the pulmonary hypertension medications to see if that will help. I think they will probably wait until tomorrow to turn down the vent. Chris seems much stronger which is what they were hoping for when he was put back on the ventilator. Tammy, his nurse, asked if there was anything specific Chris would like to see on TV. I said probably not during the day but tonight he had a lineup shows he liked to watch-Chris nodded in agreement. Hopefully things will continue to improve throughout today. This is truly a day the Lord has made-Let us rejoice in it!! Take Care. Mary Jo

We just left Chris for the evening. He seemed comfortable and was quiet. The great thing is that although his heart rate is still high, about 114-he is in a normal sinus rhythm. His p-waves were regular. (whatever that means) The nurse showed me on the monitor what she was talking about-I knew it was good because the nurses clapped when they saw it! Chris really likes the swabs soaked in cold water. I told the nurse he would have me soaking swabs and putting them in his mouth all night if he could. I told Carolyn I probably needed to change my name to "Swabbie." Seriously, Chris is stable, his heart rate and blood pressure are good. Tomorrow may bring a few small changes, but for right now he is comfortable and doing well. Thanks for all of the prayers and words of encouragemant. Take Care. Mary Jo (a.k.a -Swabbie)

It has been a quiet, uneventful day. So far all the cultures done on Chris have been negative. The doctors are adjusting medications and Chris seems to be holding his own. He is awake when we visit. Carolyn and I left the hospital to get lunch (Baker's Square-gotta love the pie!) and we had some of our prescriptions refilled at Target. Apparently, while we were gone, Chris let the nurse know he was tired of it all-the vent, IVs and such-she calmed him down and explained what was going on and she said he seemed better and I am sure he was. When Carolyn and I got back to see him he looked good. Knowing how dry his mouth gets normally, I asked the nurse about giving him one of the "swabs" soaked in water-she had just done it but, said if he wants more to go for it. They are getting ready for a shift change, so the ICU will be closed for visitors-I guess we will hit the cafeteria for frozen yogurt before it closes. I don't anticipate any changes during the night with Chris we will see what tomorrow brings. Mary Jo

Chris had a quiet night. His heart rate is still high but the nurses are keeping on top of that. When we first saw him this morning, he opened his eyes and recognized me, and was able to respond to my questions. So far he has no infection-they are still waiting to read some cultures this afternoon. The anesthesiologist will be in shortly and will decide what needs to be done to help keep Chris's numbers in the right range. I won't be surprised if they wait another day before trying to take him off of the vent-he getting good rest right now. It is a wait and see day. The sun is trying to peek through the cloud cover. It is cold - in the 40's (I love the temp-Carolyn is cold). Carolyn and I will go out this afternoon to get lunch and run some errands-it really makes a difference. Take care I'll update later. MJ

Although it has been a good day we have hit a bump in the road. Around 7pm the drs. and nurses decided that Chris needed to go back on the ventilator. Chris was doing the deep breathing and trying to cough, but it was really zapping his strength, so they decided to give him at least another night to rest. He still has a bit of a fever so cultures have been taken and infectious diseases will check on him tomorrow-they want to be sure to have the right antibiotics on board if he does have an infection. He heart rhythm has come back down and his blood pressure is back up. He is getting fluids and they will probably give him a unit of blood to help things along. Chris was not happy going back on the vent, but was struggling so much to breathe that I am glad he will have more time to gain strength. His nurse, Diane, assured us that things are stable with Chris-he just needs more time. Tomorrow is another day and hopefully Chris's road to recovery will continue on the straight and narrow. Thanks for all the prayers and words of encouragement-they really help. Mary Jo

As I said it would be, it has been a difficult day. Chris was taken off of the ventilator about 1:30 this afternoon. It was wonderful to walk into his room and not see the breathing tube. Now he has to work on coughing and deep breathing to help keep his lungs clear and to get them back to doing their own work. Chris has said a few things to me-it is hard for him to talk-and I have reassured him that he made it through the surgery and he is working on recovering. As expected, the steady numbers we have been seeing are a bit erratic right now, but as time goes on and medication adjustments are made they too will settle down. Carolyn and I have been visiting for about 10 minutes each hour-Chris does not seem as anxious if he knows we are just in the waiting room. I am working on a needlepoint belt I started ages ago and Carolyn is reading to help pass the time. We talk to the other families as they wait to hear about their loved one's surgery. This morning one family was going through a scrapbook their daughter had made-I recognized some of the materials she had so we talked about this and that related to scrapbook. We met a nurse today who saw Georgetown, Ky on Chris's door tag-she asked if it was close to Lexington--it turns out she had a patient last year from Lexington who has kept in contact with her-it really is a small world sometimes. Take Care I'll let you know how things go this evening. Mary Jo

Good Morning-Another beautiful day here in Rochester. Chris had a good, restful night. Today will be a difficult day all around. The "care" team will start to turn down the vent and some of the meds that have been keeping Chris sedated. We just saw Chris-he was awake and and nodded in answer to questions. He reached for my had and gave it a great squeeze. I told him that his mom and I would be in the waiting room and would come back to see him-he nodded and was not agitated like he has been in the past. With removing medications and turning down the vent the numbers that have been so steady are starting to jump all around. His heart rate is high (144-they like it to be 90-100-it has been about 105) so a different med was added-the rate was dropping slowly as we were leaving. He continues to have great urine output, but that also depletes his potassium so it is a vicious cycle. I forgot to check on his temp-it did not feel like he had a fever. Cara, the nurse who has been taking care of Chris the past two days is back again today which really makes it easier on Carolyn and me.
I'll keep you posted as I learn things. Mary Jo

Survivor has just come on TV-and it brings to mind what a survivor Chris is. He has had a good day. The nitric oxide (sp?) has been turned off-it s the med they have been slowly turning down. Chris has had no ill effects from removing it. The next step will be to ease up on some of the other meds and to start turning down the vent. Chris has been pretty quiet today thanks to the different meds. As they work on weaning him from the vent he will be more awake and I am sure he will try to fight the breathing tube. I am so looking forward to hearing his voice! Chris's care team continues to talk about how well he is doing. Chris has about 2 degrees of fever, but Tylenol seems tbe keeping that at bay. Tonight the remaining chest tubes will be removed. Wendy, his "evening" nurse, moved the IVs from his hands to another site (in his leg I think)so it is now much easier for me to hold Chris's hand during our visit. Cara his day nurse brought in some cd's to play for Chris during her shift-it was great to hear the music instead of just the machines.. Tomorrow I will go to the hospital library to check out some of Chris's favorite classical music to play as well. (all of the rooms in the ICU have a Bose CD player) Carolyn and I spent the morning and early afternoon at the hospital-the waiting room has such a beautiful view out its wall of windows. We returned to the room and slept for about an hour and walked back to the hospital to visit Chris. Our hotel had homemade Vegetable Beef soup for everyone which both Carolyn and I enjoyed. We will return to the hospital for our last visit of the evening and then back to the hotel-I'll probably do laundry and watch TV. Allison and Emily are both doing well-I know it has been difficult for them to be so far away, but we keep in touch with long phone calls in the evening and text messages during the day. Again thank you to everyone for the encouraging words-they help -a lot. Take Care. Mary Jo

If you would like to send a card to Chris it can be sent to either the hospital or our hotel the addresses are below. Unfortunately fresh flowers are not allowed in the ICU and probably won't be allowed when he transitions to the step down unit because of his lungs.

Christopher W. Johnson

Staybridge Suites, Rm 238

Second Street SW

Rochester, MN 55902

Or

Christopher W. Johnson

Saint Mary's Hospital

1216 Second Street SW

Rochester, Minnesota 55902

Today is a new day and a beautiful one at that! Although the skies are cloudy here in Rochester, the lights are shining brightly at St. Mary's Hopital. Chris had a good night! He is right on schedule with the decrease of his meds. Hopefully late afternoon they will start weaning him from the ventilator. Chris is only lightly sedated so he is more aware of us when we visit. I placed his prayer quilt at the foot of his bed so he can see it and draw strength from the prayers tied into it for the days to come. Carolyn and I had a quiet evening yesterday, a good night's sleep and a wonderful breakfast and are ready for any challenges today may bring. Mary Jo

What a wonderful day! When Carolyn and I saw Chris this morning he opened his eyes and smiled at me. Each time we visit he opens his eyes for us and is aware that we are with him. Each visit to the ICU brings small changes. They removed two chest tubes and the external pacemaker sometime this afternoon. The dressing on the chest incision is gone, the incision looks great. The nurses continue to verrrry slowly wean him from medications. They anticipate trying to remove the vent sometime tomorrow evening-that would probably be the earliest to expect the tube to be out. Everyone we talk to who has been part of Chris's "care" team or the surgical team has been very impressed with how good Chis looks and how well he is doing. I think he looks good and is doing well, but it is great to hear others agree with you. Carolyn and I try to go in to see him for a few minutes every 2 hrs or so. We did take time to leave the hospital this afternoon and get a good lunch-the hospital cafeteria is OK but gets old very quickly. This afternoon we returned to our room-I am not sure who fell asleep first me or Carolyn, but we both had a wonderful and very needed rest. We will go back to the hospital in the next hour or so to say good night to Chris and then return to the hotel and vegitate in front of the tv-good mindless entertainment. The comments and words of encouragement from family and friends are great to read and as I have said before they make home seem that much nearer. Thank you. Mary Jo

Chris had an uneventful night. Carolyn and I have just visited with him. The ventilator has been turned down just a bit, they have taken him off of one medication as well. Today they will work on getting him off of an inhaled medication and then they will be able to work on weaning him from the ventilator. Dr. Puga was very pleased with Chris's progress. The ICU nurse said they might also try to take out the chest tubes today as well. Each little change is a step ahead in his recovery. Carolyn and I will be able to pop in and check on him throughout the day. I'll post as changes happen. It is a beautiful sunny day here in Rochester-God has surely sent his blessings to us. Mary Jo

We went to see Chris at 8:00 pm figuring we would get an general update from the nurse and just "visit." What a wonderful suprise we had when Chris opened his eyes and realized that we were in the room with him. The nurse said he has been able to respond to commands-to move arms and legs. He got a bit agitated when I said we were going to leave-I asked him if he wanted us to stay a little longer and he nodded yes! He is still on the ventilator and will probably continue to be on it most if not all of tomorrow, but he is holding steady with everything at this point. Carolyn and I are going to call it a night-4:30 am is way too early to be up and about. I am sure we will sleep much better tonight knowing that Chris is being taken care by such a wonderful team of professionals. Thank you again for all of your thoughts, prayers, and comments. Mary Jo

Carolyn and I have just returned to our hotel from the hospital. Chris is being well taken care of in the ICU. We got to see him for a bit and he looks great. His color is good and so are all of his"numbers." I asked a stream of questions which the nurses answered one by one. The ICD that was put in 2 years ago was removed during surgery-Dr. Puga was unsure about what he was going to do about it yesterday. Chris will be happy-he always referred to it as his 'beer belly." They will keep Chris well sedated for the remainder of today/tonight and see how things are in the morning, before they start taking him off of the ventilator or make any major changes. Thank you for all of your thoughts, prayers and comments. Mary Jo

Mom asked me (Allison) to write an update for her, so here we go. Dad got out of surgery a few minutes ago, and they were able to fix everything that they were planning on fixing. Everything went really, really well and the surgeons are all very pleased. The pressure in his right ventricle pre-surgery was around 90; it has dropped into the 40s and the doctors are expecting it to drop some more, so that is amazingly good. Mom and Grandmother will be able to see him in a little while, though the doctors are planning on keeping him asleep for a bit. Mom will update with more information as she gets it. Thanks for all of the well wishes and prayers!

Well they took Chris back for his surgery at 7:52. He was in great spirits during pre-op, cracking his usual corny jokes. As they were getting Chris situated on the gurney, he said he wante HBO tuned in on the heart monitor-he did not like the channel they had it on(the monitor was blank!!!) he was not hooked up yet. Always the comedian. The computer here in the waiting room was free so I took a chance to do an update. MJ

It is 5:00 am here, and very quiet around the hotel. We are getting ready to leave for the hospital. I know once we cross the street to the hospital the tranquility we have now will be gone. It will be a long and very emotional day for the Johnson family. Please continue to keep us in your thoughts and prayers , for today will be difficult on all of us. Thanks. Mary Jo

PS. I have added an email address for Carolyn at the top of the page

Well, we have had a long day of tests-starting at 6:30 this morning. Chris had the usual pre-op stuff and they did a heart catheterization. All of the tests and the cath results were fine and everything is set for tomorrow. Needless to say we are all very tired. Tomorrow will be earlier and longer. We have to be at the hospital at 5:45 am. His surgery should begin around 7:45 and could take over 6 hrs. We met with both the cardiologist and the surgeon. I think we all felt somewhat better after meeting with the doctors. Yes, this surgery is very high risk, but Chris should be much better when it is all over. We were told several times that many doctors and surgeons have talked about Chris's case and they all agree that doing this surgery is the best and only option for Chris. There is a possibility that he will eventually be able to get rid of the infusion pump-no more flolan! They are going to use a pig valve to replace the pulmonary valve and are very hopeful about repairing the rest of his heart. They will monitor the pulmonary hypertension during the surgery to decide how they will go about with the repairs and closing of the shunt. We appreciate all of the prayers and comments and will continue to keep you updated. Mary Jo, Chris and Carolyn

We are busy getting ready to head north. We fly out very early on Sunday,and should be in Rochester by early afternoon. Monday, Chris starts his appointments at 6:30 a.m and ends around 5pm. Tuesday he is supposed to be at the hospital by 5:45 a.m Luckily our hotel is just across the street from the hospital. It is mind boggling trying to pack for a two week stay-I know the weather will be colder than here-do we need our parkas or not? How cool will it be in the hospital? What "entertainment" do I need to pack? Fortunately we will have laundry facilities and a car so if I forget to pack something I can go buy it somewhere!

This is picture of the prayer quilt Chris received today from Faith Baptist Church, Georgetown, Ky. Chris's mom is a member of the church and many of our friend are also members. This quilt came from the Faith Baptist chapter of Prayers & Squares, The Prayer Quilt Ministry. Each knot on the quilt represents a prayer that was said especially for Chris, his family, doctors and staff at Mayo Clinic. There are strings that are not tied that can be tied while we are at Mayo, by us or anyone who wishes to say a prayer for Chris. This is a lovely gift from the congregation and one that will bring Chris comfort in both spirit and warmth in the cold of Minnesota.

Being new to the whole weblog thing I did not realize that you had to set the blog to receive comments. Well, I have it set now to receive comments. If you would like to leave a message just click on the word comment and type what you want to say. Your comment will be on the blog for others to see. If you would rather email me, just click on the envelope. MJ

I just realized that some of you may not know why Chris is having surgery. The pulmonary valve on Chris's heart needs to be replaced. The Doctors at Mayo Clinic have also decided that they will close the shunt Chris has and they will repair the original heart defect during surgery as well. This should help him feel better, but it will not cure the pulmonary hypertension he has. Chris will still need the 24 hr infusion pump for the Flolan medication and will continue to use oxygen 24/7. MJ

This blog will be a daily update on Chris's surgery. Chris, Carolyn and I will leave for Minnesota on Sunday, October 22, 2006. Surgery is scheduled for Tuesday, October 24th at St. Mary's Hospital, part of the Mayo Clinic.

We will be staying at:
Staybridge Suites
SECOND ST. SW ROCHESTER, MN 55902
Hotel Front Desk: 1-507-2896600 Hotel Fax: 1-507-2896540

Saint Mary's Hospital
1216 Second Street SW
Rochester, Minnesota 55902
(507) 255-5123


I will update this blog eachday (hopefully) and let everyone know how things are going.
Thanks for reading! MJ