Journal

Journal entry by Charlene Johnson

Kris said the doctors told her it looks like the leaks in the lung are a tad better but we will still meet with the specialist on Monday to see if he suggests more valves. Eventually they will talk about removing the right lung once he gets a lot stronger. There isn’t much they can do with this lung as it is like tissue paper due to all of the damage that has occurred.

Mark did great yesterday in PT and actually managed to walk around his bed with the help of a walker and a therapist. They had him doing a lot yesterday and he slept really well last night.

He’s doing well with solid food and seems to be enjoying the taste of food again. He still gets the feeding tube during the night because he only eats small amounts during the day.

Journal entry by Charlene Johnson

Update from Kris this morning: Well Mark had is first bite of food (yogurt). He said it was delicious. The upsizing of the chest tube went well last night and it will keep the pneumothorax from getting larger we hope. If the leaks in the lung (they said this morning there is one in the upper quadrant as well as one in the lower quadrant) doesn’t look better by Monday then they plan to plug the holes with valves. So as we make some strides forward the lung at this point is not ready to cooperate. Mark is doing great with P.T and working on getting his strength back and impressing the therapists so much so that once we get control of the lung issues he may be able to skip LTACH and go straight to the Long Term Therapy place by Mercy Hospital.

Journal entry by Charlene Johnson

Kris said the pneumothorax on the right side is getting larger and the chest tube Mark has in is too small to pull all of the trapped air out so he got a larger tube put in today.  The specialist said yesterday that he would like to see the hole that is causing the issue to heal up on its own in a week or two.  If it doesn't they will go in and plug them with more valves.

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Journal entry by Charlene Johnson

Marks lung is still leaking so the doctors are talking about a solution. So it doesn’t look like he will be making the trip to Muskegon anytime soon. They want his lung to be stable. He’s still experiencing some delirium but is also showing us that he is still capable of his old antics. Which makes us all smile a bit. He’s been off the ventilator for the last couple of days so he is doing all the breathing on his own but is still getting oxygen. So that means he was able to surprise us all when we visited this week.....we all got to hear his voice for the first time is a very long time. His trach is capped so he is able to talk. It was amazing it was to hear his voice.

He is able to eat some soft foods like oatmeal, yogurt and pudding. So they are introducing some food slowly. If he does well they will be able to stop the tube feeding.

Journal entry by Charlene Johnson

During my visit yesterday they decided to do the procedure to plug more of the holes in Mark's right lung.  He was sedated during the procedure and Kris and I got to stay and watch them do it.  So we got to see Mark's lung and the amazing procedure that allowed the specialist to plug two more of the holes.  Mark was in good spirits when I arrived but was sleeping when I left due to the sedation.

Kris said the specialist was there this morning and so far his lung is not leaking.  They are going to clamp off the drain again and monitor the pneumothorax and see if it gets larger.  If it does, he will have to go through the procedure again and have more of the holes plugged.

Benefit Info: 
More details are coming together for Mark's benefit.  It will be held at Watermark Church (13060 US 31, Grand Haven) on 4/28/2018 from 6-9:00 pm, $10 admission.  Spaghetti dinner will be from 6-8:00 pm.  We will have a silent auction, live auction, 50/50 and raffle prizes! 

Anyone is welcome so please spread the word!  We have some great items to auction off!!

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Journal entry by Charlene Johnson

The doctors told Kris this morning that Mark's lung is leaking again so the specialist is going to talk to them this morning.  Kris thinks the plan will be to go ahead and do the procedure again and put more valves / plugs in the lung. 

She said physical therapy is going well and they are really surprised at how much stronger Mark has gotten from week to week.  For those of you that know my brother it really isn't surprising at all.  He wants out of that bed and is going to work very hard so he can!  Lets hope that he keeps that attitude on his long road to recovery. 

In a previous journal entry I indicated that Mark's lungs have been permanently damaged.  I've attached a photo of Mark's lung x-rays.  Oldest on the left 2/21, top right 3/03 and bottom right 3/16.  You can see improvement in these x-rays which is great but the trained eye can see the damage as well.  The dark areas in the top of the lungs in the 3/16 x-ray are the damaged areas.  Mark is making great progress but we don't yet know how this damage will affect him long term.

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Journal entry by Charlene Johnson

The doctor said that his pneumothorax looks good but they want to really keep an eye on that right lung it looks as though it is still leaking from one of the four holes that they didn’t put a valve in. So for the next couple of days we watch it and see if the hole heals itself or if they have to go back in to plug it. 

Journal entry by Charlene Johnson

Mark had the procedure to have the feeding tube put in his belly so he doesn’t have to have tubes in his nose.  They are still talking about moving him to LTACH in Muskegon at some point next week as long as we don’t have any more bumps in the road. The doctors want to make absolutely sure that his lungs are stable enough before they authorize the release.

Journal entry by Charlene Johnson

Well Dr. made his rounds and said Mark is making progress towards going to LTAC (Long Term Acute Care) looking like next week if he keeps improving. The one way valves the specialist put in yesterday have so far been doing their jobs. This morning they clamped off the the line from the lung and turned down the ventilator settings so now we just wait to see how he does. Cross your fingers that the lung doesn’t re-collapse. If it does the specialist will have to plug up the other four holes.

Journal entry by Charlene Johnson

Update from Kris:  Everything went well with plugging the holes in the lower part of right lung. The Dr. plugged three of the largest holes out of the seven he found. We will wait and see how he is doing with just the three plugged if the lung stays expanded when they test it out tomorrow we are golden.  If it re-collapses he may have to go back in for the rest of them. Cross your fingers. He is resting comfortably now. Our big accomplishment for the week was that I didn’t have to pack Mark up with ice packs before I left for the last two nights. Nor did he need them the following mornings. His temperature seems to be staying down on it’s own.

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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)


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