Journal entry by Charlene Johnson

So 4 months to the date Mark was released from the hospital and is home!!!!! Yes you read that right, he went home yesterday! Hallelujah!!!

He still has a chest tube in but the doctors let him go. Can you imagine how he and Kris must feel being in their own home after 4 months!!

Thank you for all the prayers, support, well wishes and all the love!
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Journal entry by Charlene Johnson

Mark is doing ok. He’s very sore and has been in a lot of pain meds. This surgery was very hard on him. As I mentioned in the last post.....he has some big incisions. They pried his ribs apart to get to his lung. He gets up multiple times a day and goes for walks or sits in the chair.

Once he is recovered from this surgery he may be able to skip Mary Free Bed and just go home!!

Journal entry by Charlene Johnson

Mark had his surgery today. We are praying this is the last major hurdle in his journey to get home.

It was a major one for sure. Even with the epidural he was in so much pain when he woke up. They cut him open this time rather than doing it laparoscopically. So he has a rather large incision under his armpit. They removed a lot of infection on the top of the lung and now he officially only has about 2/3 of his right lung remaining. Unfortunately once they got his pain under control they discovered that his suction wasn’t on. He was supposed to be hooked up to suction immediately after surgery to get all the blood and fluids out and to hold the lung open. Because they failed to do this his lung collapsed and it caused Mark more pain. Let’s just say we all should be happy that we weren’t his nurse then this discovery was made. He was an unhappy patient.

It will take him a little longer to recover from this surgery but with his determination we know that he can beat all odds.

His sense of humor is intact however. He asked Kris to send Carla and I a picture of him so we’d feel sorry for him and bring him Krispy Kreme donuts. How can you say no to that? So we made it happen!

The worst is over big bro, you’ve got this!

Journal entry by Charlene Johnson

Mark was supposed to have surgery today but it got pushed to Monday-Tuesday next week. You can imagine how pleased he is. Not that he is excited for surgery but it just delays his progress. He wants to do the surgery and get it over with.

The doctor is going to go in cut out the blebs and staple them closed. He is thinking aprox 3 but won’t know for sure until he gets in there. He has to cut the lung away from the chest wall where he scrubbed it so scar tissue would form. He said it’s going to be a much larger cut and this one is going to hurt a lot more than the last time. Overall it is a much rougher surgery than the last one. This is exactly what they were trying to avoid having to do😞

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Journal entry by Charlene Johnson

Sorry I haven’t posted anything in a few days. Yesterday was a mix of euphoria and exhaustion after the benefit. In case you haven’t heard, it was amazing!! And a huge success! So many thank you’s to so many people.

Today Mark had the valves removed from his right lung. They sedated him. Kris said the procedure went well. We will see what happens now. If there are still leaks in those spots or not. The surgeon will evaluate and decide how to proceed. It would be really awesome to have a plan that could be executed so Mark could really start making progress toward getting out of there.

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Journal entry by Charlene Johnson

It’s just a waiting game with Mark, just waiting to see what this lung is going to do next.....heal on it’s own or require medical intervention.

He’s is good spirits and is doing some physical therapy at Spectrum. He been consuming lots of protein to help get rid of his bedsores which bother him more than the chest tube. He now has a new protein powder thanks to cousin Tanya! And he likes it!

We’ve all been very busy getting ready for what we believe will be an amazing event Saturday!! So thanks for being patient with me as my posts have been irregular.

Journal entry by Charlene Johnson

It looks like the chest tube is doing its job so Mark may now be a candidate for the procedure called pleurodesis. This is where they go in and rough up the inside and it creates scar tissue to help keep the lung from collapsing over and over again. Unfortunately our family is quite familiar with this procedure as I’ve had it done to both of my lungs back on 2011 and 2012. There may be something genetic that Mark and I both have in our lungs that has caused problems for us. Mine however was spontaneous, there was no influenza.

I don’t want to see him go through another surgery but if it works it will probably all be worth it.

Journal entry by Charlene Johnson

Mark got his chest tube sized up this morning and is doing well. It was a quick procedure but they sedated him. They did this because he’s been through so much already. Now we wait and see what this nasty lung decides to do next. You are a punk right lung!

I visited him last night and brought him a Whopper and a chocolate shake and he ate it all. He is able to eat so much more than he did a couple weeks ago.

He seemed like he was pretty upbeat. We talked about everything that everyone is doing for the benefit and he and Kris both are so grateful for it all. So many amazing people behind it all and so much incredible generosity.

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Journal entry by Charlene Johnson

Well we are now dealing with a hydro pneumothorax that does not act like the typical ones the doctors have seen because the lung will not inflate all the way because of scar tissue. Without it inflating all the way they won’t be able to stick it to the chest wall to block the hole. They can’t get the air to evacuate either so they plan on upsizing the chest tube tomorrow then it’s a waiting game again. Last resort is surgical intervention again.

You can imagine Mark’s frustration and mood today. He really needs some prayer and some positive thoughts to keep his spirits is up!

Journal entry by Charlene Johnson

On January 18 Kris brought Mark to Mercy hospital in Muskegon because he was having trouble breathing after fighting influenza for a week.  Looking back on that day I remember feeling worried but was confident that he had this and would be home in a few days.  We had no idea how serious his condition would become and how many emotions and tears would come in the days/weeks to follow. 

He was in the ICU at Mercy for 11 days.  He had a serious case of influenza that turned into pneumonia and his lungs were in serious trouble.  He was wearing a mask with forced air for several days when his condition continued to deteriorate they intubated him.  This would help his lungs relax a little and wouldn't require him to work so hard to breathe.  He was then diagnosed with ARDS (Acute Respiratory Distress Syndrome).  This condition causes inflammation in the lungs.  The doctors were telling us time was what he needed.  Time for the body to heal while we impatiently waited.  On January 30 his stats dropped and the staff at Mercy was unable to stabilize him so he was flown aeromed to Spectrum Butterworth in Grand Rapids.  This was such an emotional scary day for all of us.

Once at Spectrum they were still unable to get his stats back up so he was hooked up to the life-saving ECMO machine.  This machine pumps the blood out, fills it with oxygen and then pumps it back in.  This machine saved Mark's life.  He was on the ECMO machine until Saturday 2/24 and a lot of things happened during that time, lung collapse, lung fluid that had to be drained, and infection in his blood being the biggest things.  He has had a fever on and off for the last several weeks.  He also has a blood clot in his right leg below the knee.  They are watching this closely. 

He is still on the respirator which is doing a lot of the work for him right now.  But he is stubborn as you all know, so his first 24 hours off of the ECMO were up and down.  He wants to do things his own way so he was fighting the respirator a little and wanting do the breathing on his own.  But since his lungs are not working properly they decided to use a paralytic to allow the machine to completely control his lungs.  They were able to wean him from the paralytic yesterday and he was doing well at 5:00 pm yesterday.  Now when I say he was doing well, it means his blood oxygen is in the 90's and all of his other organs are working great. 

We have gotten so used to seeing him like this it that it has become our new normal for now.  But nothing about this is normal.  His condition is very serious.  When talking to the physician assistant yesterday she was very real and honest.  She said if we'd asked her a week or two ago if he was going to make it she would have said no.  But now her answer is yes but the reality is that it is likely he will never be the same.  His lungs will have scar tissue for the rest of his life.  Best case scenario is that he will have to take lung medications for the rest of his life.  There is also a possibility that he may need oxygen.

Many people have reached out to us and extended their support and we appreciate that so much.  What we need most is prayer.  So for those of you that have been in the know since Mark entered the hospital and for those of you that were unaware we apologize for not sharing and please don't take it personally.  We have been so overwhelmed with our own emotions.  Mark has been sedated for about 4 weeks so we are all longing to see him awake.  He does stir occasionally but is very incoherent which is probably for the best.

We will post updates here as we find out more information from Mark's team of doctors.  It will be much easier on the family to post updates here rather than sending out multiple messages each day. 

I apologize for the long post, daily updates will be much shorter now that you are up to speed.  You can post comments on this site and the family can read them and respond to questions.
Mark’s Story

Site created on February 26, 2018

Mark is a 48 year old  son, brother, husband, father, bumpa and friend.  He is well known for his perfectionism and stubbornness but he also has a huge heart.  His love for hunting, camping and anything outdoors goes above and beyond anything else.  He is an incredibly hard worker and rarely sits down.  From sun up to sun down he is always on the go.  Many conversations prior to Mark getting sick were regarding him slowing down and enjoying his loved ones.  He's so driven to get things done he often forgets that we all just want some of his time. 

As many of you know we lost our dad Feb 3, 2014 and this was very hard on all of us.  Even in recent conversations Mark still had a hard time speaking of him because they were so close and did so much together.  He would tell me, "Charlene, everyone thinks I am so strong, but I am not." 

We need to pray for him to be stronger than ever.  Strong enough to fight and get through this and not give up.  Strong enough to get through everything that he has yet to go through.  He has a long challenging road ahead and he will need all of our support. 

I consider that our present sufferings are not worth comparing with the glory that will be revealed in us. (Romans 8:18 )

For I can do everything through Christ,who gives me strength. (Phil 4:13)