Journal entry by Charlene Johnson

Hopefully Jeremy cheered Mark up with his presence or with the Krispy Kreme doughnuts today. They have yet to meet up again with the lung doctor after finding out Mark had to go back on wall suction with his drain tube. His internal doctor said today that they want to give it another day or two and see if it can resolve itself and if not they will plan on speaking to the lung doctor and see what kind of plan they can come up with. They are trying to avoid another surgery so close to him having had the last one.

Journal entry by Charlene Johnson

Mark had an uneventful day yesterday which was great considering it was Kris’ birthday. I am sure they both would have rather been celebrating in other ways but an uneventful day is worth celebrating too!

When they put the chest tube in they put him on suction which helped suck the lung open. This made Mark uncomfortable. Today they turned that off and plan to see how he does. So its a waiting game for now. If this lung continues to cause trouble the surgical team will be looking for a way to solve it. Maybe another surgery (pleurodesis) or they’ve talked about putting a gel like substance in there that creates a seal around his leaky lung. Hopefully it will just resolve on its own and he can return to MFB.

It’s time for this lung and Mother Nature to get into shape! No more leaks and no more snow!!

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Journal entry by Charlene Johnson

Kris got to see the X-ray and he has two pockets one is air trapped just below the rib cage(they thought it was a pulled muscle at Mary Free Bed) it’s also been making him bloated he was having back pain this morning from it. The other pocket is fluid. They don’t know if it’s infection or maybe just blood pooled from the surgery. They will send it in to be tested and we should know within 48hrs. They have him on antibiotics just in case.

He got his chest tube put in today and he is feeling more comfortable now that he doesn’t have all that air trapped in his chest. We also found out that his room mate has MRSA. Needless to say Kris resolved that situation, he was moved to a private room. We aren’t sure what they were thinking considering everything he has been through.

Journal entry by Charlene Johnson

Mark has had a set back.  He is at Spectrum and will be admitted into the ICU because he has another large pneumothorax on the right side.  The thoracic team will be meeting with them to come up with a plan.  He will likely get another chest tube.

He has been doing so amazing so this news is rather discouraging for us, but we know what he is capable of and how strong he is.  Please continue praying for him!

Journal entry by Charlene Johnson

Mark has been doing great. He broke his walking record with 600 ft today! The last couple days have been uneventful in a good way. Mark will likely be transferred to to Mary Free Bed tomorrow!! Another step closer to home big guy! You can only imagine how much he just wants to go home.

Journal entry by Charlene Johnson

Well it’s been a BIG day. Mark has a new room and has been promoted out of ICU! The chest tube is out and his trach is out! And he has been off of oxygen all afternoon! What?!?! He needs it when he is up and moving but while resting he is able to maintain good numbers without it.

Mary Free Bed is calling his name............

Journal entry by Charlene Johnson

The procedure this morning went great. Two of the valves were removed and they plan to leave the other remaining ones until further notice. Marks pain from the drain tube is slowly decreasing. They plan on doing another X-ray later today to see if the lung has expanded to maximum capacity. It sounds like we will be moving out of ICU in the next day or so if all things keep going well. Here is a picture of the valves they removed.

Mark did some PT today and spent some time relaxing in the chair.

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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)