Journal entry by Charlene Johnson

Kris said Mark won’t be going to the acute care facility real soon. They have discovered that Mark has either one or two holes in his lung and want him to stay in Grand Rapids because the only specialist in West Michigan that does the procedure is the one they just talked to. So they will monitor him until morning and then decide if they need to go through the tracheotomy site and put some plugs in the holes. They also plan on putting the feeding tube into his belly so he can get rid of the lines in his nose because they bother him so much.

Three steps forward, two steps back.....

Journal entry by Charlene Johnson

Mark had a pretty great birthday today! He had some physical therapy today and maintained good stats all day. They are talking about transferring him to an acute care facility in Muskegon as early as tomorrow.

When I visited him today he was very coherent and showed his sense of humor a little. Kris usually gives him water with a little sponge they use to wet his mouth. He can only have small amounts due to the trach. But today he wanted pop. So since it was his birthday he got a little orange pop and he loved it!

He wanted lots of kisses from Kris and he even gave his little sis a kiss on the cheek. I got to tell him how much I missed him and today is the first day I think he really understood how much.

Tony visited him earlier in the day and was able to tell him that he is still ugly which made him laugh. Carla, Jeremy and mom arrived just before I left. I didn’t get a full report on their visit but I am sure it was great.

We will always remember Marks 48th birthday because it will be the one that we are so thankful for. ❤️

Journal entry by Charlene Johnson

We now know part of the reason Mark has been so out of sorts the last couple of days. His right lung had a very large collapse and when they finally put the chest tube in there they were able to get 3 liters of air off of his right side. His respiratory rate is now back down to the 20s (he’s been in the 40s and up to the 50s the last few days). And his fever is down to 37.2 (98.9 F). He’s resting much more comfortable tonight .

Journal entry by Charlene Johnson

Mark was pretty alert when Kris got there early this morning and stayed that way for a few hours.  The doctor informed her that Mark has another pneumothorax (collapsed lung) on the right so they are going to drain that this afternoon.  The infection/pneumonia that they saw on the x-ray the other day looks much better.  Overall he looks better that he has in the last few days. 

A few weeks ago I remember looking forward to now and thinking how much time we had for Mark to get better before his birthday.  We will be celebrating this one in the hospital and that is okay, because he has been so strong!  So tomorrow, day 54 we will celebrate Mark turning 48 and just be thankful we can be with him.

Journal entry by Charlene Johnson

Mark had an uneventful day with several visitors.

He was more alert today and his belly is down compared to yesterday. The Dr. did say that the blood clots he has in the neck and arm are small ones but it can take weeks for the medication to dissolve them.

We will call this one a win.

Journal entry by Charlene Johnson

Mark had a bad day today. The doctors told us there could be setbacks along the way but since we all know Marks perseverance is exceptional we expected him to beat all odds.

They had to stop the tube feeding because his belly was distended. He had a fever this morning and had been breathing rapidly the last couple days. They did a CT today and the doctors disagree about the results. One thinks Marks right lung is collapsed and the other thinks he has a large bleb. We also found out that they think he has a blood clot where the tubes for the ECMO were placed in his neck. They think he has one in his upper arm too. They plan to do an ultrasound to confirm. He is getting treated with some general antibiotics since they haven’t found a source of injection which they think would cause the fever. But the fever could also be caused by the blood clots. He is receiving medicine for the histoplasmosis.

The doctors have told Kris that Marks upper right lung is severely damaged and they see some fibrosis in the left lung.
The CT also shows that there may be an infection around the kidneys but the lab results don’t agree. It also shows that he could have some pneumonia starting in the lower part of his lungs. The breathing issue could be the cause of the tube in his stomach being to high so they put it down lower a total of 5 inches today.

He was really out of it today compared to when I saw him Thursday.

I’ve spent the last several hours trying to find a way to put all of this into words. We are frustrated at the findings today and are a little sad. When all you can do is sit and watch this happen to someone you love, something inside you just falls apart.

Please keep praying 🙏🏼❤️

Journal entry by Charlene Johnson

The doctors reiterated today how great Mark is doing.  He was off the ventilator for about an hour today which impressed everyone.  They are talking about moving him on Monday, to Muskegon for acute care where he can be weaned off of the ventilator and focus on some specialized treatments then to sub acute care for more intense physical therapy needs. 

Mark is still going through what they call the delirium phase which has him quite agitated at times.  Sometimes he is there mentally and you can see that he is able to process what you are saying to him and there are times he isn't.  Last night when we were there we were reading his lips and we are quite sure he said he wanted to go home.  He kept trying to use us to pull himself up to get out of bed. 

They've talked about trying to cap the trach so he will be able to talk.  That might happen sometime this weekend.

They found histoplasmosis in his urine yesterday, so they are going to start treating him for it.  Histoplasmosis is an infection caused by breathing in spores of a fungus often found in bird and bat droppings.  Most people with histoplasmosis never develop symptoms and aren't aware they're infected. But for some people — primarily infants and those with compromised immune systems — histoplasmosis can be serious. 

Journal entry by Charlene Johnson

The doctor said Mark is making great strides.  He had physical therapy this morning and smiled through the whole thing.  The therapist said it was nice to see as most people aren't happy to see them.  Mark is still going through the delirium stage as they continue to decrease sedation and pain meds slowly. 

They had to put the larger tube back in his nose as he was having a buildup of stomach acid and it caused him to vomit.  They think the original tube must have been plugged because nothing was coming out of it. 

Another good update for today!!  Mom, Carla and I will be visiting him later today so I may post another update later on.  He made me cry when he squeezed my hand Tuesday, so we will see what he does to make me cry happy tears today. 

Journal entry by Charlene Johnson

Kris said Mark had an OK night last night, he was awake but not really coherent and was lifting his right hand toward the feeding tube and tracheotomy tube so they had to put wrist restraints on him.  For those of you that know Mark, you can imagine how happy he must have been!  She told the doctors this morning that Mark may just be trying to feel the feeding tube and other larger draining tube that is in his nose as well as the trach and is trying to process it.  Kris has explained things to him but he is still kind of in and out of it and may not fully understand.  The doctor said that he could probably take out the larger tube but the feeding tube has to stay in. 

She also told the doctors that when Mark gets agitated exercise seems to help calm him so he is going to have physical therapy come everyday instead of every other. 

The respiratory therapist turned down the ventilator setting so Mark has to initiate his own breath.  Hopefully he will be able to keep numbers up today!  This would be amazing progress for him.

Thank you all for the prayers, love and support! 

Journal entry by Charlene Johnson

I don’t want to bombard you with two updates everyday but today’s visit was so great I have to share. Mark was very coherent today, he was able to respond to simple questions by nodding and shaking his head. And when we arrived he was sitting in a reclined chair. He was trying to lift his head and can lift his arms and move his feet. Tears of joy today!

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)