Journal entry by Charlene Johnson

Mark is doing well but still really sore. The Dr. that put in the valves came by and want’s to now take out two of them and see if they can get the lung to expand a bit more. The plan for that is around 7:30 am tomorrow. Hopefully within the next day or so the pain will start getting less and he will be able to do a bit more.

He did go for a walk today with a walker. He walked to the nurses station, took a break and then walked back. It’s his first walk since his surgery Saturday morning.

Journal entry by Charlene Johnson

Mark started to get sore about 11:00 last night and it got pretty bad through about 6:00 this morning. They have him on a morphine pump and he can push the button every 8 minutes and he is. The Dr. said that the scar tissue from the bleb had already adhered itself to the heart, diaphragm and chest wall it was taking up 1/3 of the lung area and was making it so the rest of the lung could not expand. He slept a lot yesterday after surgery so he didn’t sleep real well last night but is pretty comfortable right now and said that it feels like it is easier to breathe.

Journal entry by Charlene Johnson

Mark had his surgery this morning. It took about 4 hours and they successfully removed the upper quadrant of his right lung. The doctor came out and showed us pictures of the removed section. Very unhealthy looking tissue so it is good that it is out now. The good news is that there is healthy lung on the right side, so he will probably be able to keep the remaining part of the right lung. Amen!!

When Mark got back to his room it was a little crazy, they were trying to get him settled and then he woke up. He was in a lot of pain and was quite scared. He is much more comfortable now and is eating ice chips.

Journal entry by Charlene Johnson

Well the thoracic surgeon came by and since the leak is even more pronounced than this morning they are planning on surgery in the morning to remove the upper lobe of the right lung. Hopefully that will take care of the pneumothorax that the leaking lung is creating. That upper portion is as thin as tissue paper so getting it out is a good idea at this point. They will also be able to get a good picture of what the rest of the lung looks like. It will take about a week to recover. Then hopefully we will be back on track.

Please pray for a smooth surgery without complications.

Journal entry by Charlene Johnson

The doctors said that Mark's pneumothorax is larger this morning which seemed obvious to Mark and Kris during his PT this morning.  Mark couldn't really do anything without getting really short of breath.  The doctors are going to get with the Intervention Radiology doctors to see if they need to move the chest tube and also talk with the specialist about putting more valves in.  Kris said Mark's positive attitude from yesterday is in hiding today.  I think we can all (to some extent) understand how frustrated he must be feeling.  

Shelly is bringing pizza up to them today so hopefully that will cheer him up.  They say thank you for all the cards, well wishes and goodies everyone is bringing to them. 

Please continue to pray for Mark and his healing.  That lung needs to be stable before he can be moved to a rehabilitation facility. 

The plans for the benefit are coming together so keep April 28th on your calendars!  We have some awesome auction items that will be available.

Comments Hide comments

Journal entry by Charlene Johnson

Mark had a busy day today. They are really pushing PT and Mark is doing great at it. They capped the tracheotomy so now he has oxygen going in through his nose so we will see how well he does for the next few days with that. His appetite is improving so hopefully we can pack a few pounds on him.

Journal entry by Charlene Johnson

The doctors came in this morning and said his pneumothorax was larger. So they took him down to reposition his chest tube and put a slightly larger one in. Two steps forward and one step back. The doctors are going to talk to the surgeons again and see what they can do about this temperamental lung. When he is strong enough they will probably remove it.

It is not unheard of for people to live with one lung so we are hopeful that his left lung will heal and pick up the slack.

Mark is doing great eating and has a normal diet. Tube feeding will likely be stopped soon.

Journal entry by Charlene Johnson

Well the doctors said it’s just another hang out day with no procedures scheduled. Really hoping the lungs keep working on healing themselves. We will keep working on PT and Occupational therapy as instructed to help with strengthening. He is doing amazing with it.

Journal entry by Charlene Johnson

The doctor said Mark’s x-ray looks a tad bit better. The lung looks a little more inflated so they want to wait a few more days and see if it’s healing on its own now and the holes have closed. PT has already been in and Mark has been busy trying to gain some strength back.

Journal entry by Charlene Johnson

Doctor came was in this morning and it looks like they are going to put in a couple valves tomorrow. Mark went for a walk in the wheelchair with Mark, Ashley, Levi and Ella. It’s the first time he has seen his grandkids since January!! Kris said she wasn’t sure who was more excited, the kids or Mark.

Tony and I brought Layton up to visit also. He was all about blowing kisses to Uncle Mark and Aunt Kris.

Mark had lots of visitors this weekend, Troy and Lisa, Greg and Shelley, Aunt Tina, Uncle Gerrit and Gerrit Jr. I am sure he was feeling so much love from you all.

Thank you all for the comments on my journal entries. One day Mark will read them all and I am sure he will feel so blessed to know how much you all care about him.

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)