The Final Round

Mike has taken to the analogy of One More Round. He even has it tattooed on his chest. He told me he wanted to get this tattoo so that when he went in for surgery the doctors would see it and know that they should continue to treat him - he wanted One More Round!

I think that it is important for all the folks who know and love Mike to understand he is in the final round.

Whether he makes it a few more days, a few more weeks, a few more months or more is yet to be determined. One thing we can count on is that Mike will keep fighting.

Mike has shared with us and with many on the hospital and clinic staff that he has had a good life. You are all a part of that - what a blessing.

He has gotten to do all that he has wanted to do. He has lived fully.

Much of Mike's life has been difficult and this final round will most likely not be much different. To say it is difficult does not rule out any of the blessings or beauty that it is or has been.

I have been amazed on more occasions than I could possibly count, at how Mike continues to live life so fully. When so many others - myself included - are whining over trials of miniscule proportion compared to the realities that face Mike and other CFers on a daily basis, he presses on with grateful intention. He plans....he executes....he thinks of others before himself.....he lives.
 

 

Philippians 2:3 Do nothing out of selfish ambition or vain conceit but in humility consider others better than yourselves.

 

I believe that because death has been a reality for so long, something that has been a part of his every conscious thought and decision, it has given him his insatiable appetite for life. 

 

I believe that this will be the legacy he  leaves for those of us who are fortunate enough to know him. For all of us whom he calls mom, dad, sister, brother, aunt, uncle and friend.

 I'm no theologian . . .
Sitting here in reflection I pause. . .
My thoughts are scattered and heartfelt. . .
I am thankful for the blessing and privilege of this gift of a son that God has blessed me with. My heart leaps out of my chest with all the thankfulness and praise I have to my God for honoring me with this gift and all the experiences I have had with Mike.

Because of Mike
     I love more deeply
Because of Mike
     I am more accepting of others
Because of Mike
     I am more forgiving and accepting of forgiveness
Because of Mike
     I judge others less
Because of Mike
     I will live life with grateful intention
Because of Mike
     I will live life more fully

In reflection there is only love.
Love keeps no record of wrongs.
I can testify that these words are true - sitting where I am sitting now - there is only love. Truth.

Mike told his father and me that he kinda feels badly for us because we will have to bury him. He will fall asleep in Jesus' arms and awake to paradise. With no time constraints on the other side, everyone he knows and loves will be there in heaven with him. He knows that we will miss him until we are reunited in heaven some day. 

We assured him our hearts will be full with all the loving memories we will have from a life well lived. We couldn't have imagined when we held him at birth, all the love and joy he would bring to our lives. We are filled with gratitude.

I have no greater joy than to hear that my children 

are walking in the truth. 3 John 1:4

Mike is giving us a wonderful gift. We will not be burdened in his death with having to wonder . . We know he is a child of God and he will be living with the One True King.

Live on sweet son, live on. 

Press on toward the goal.

Forgetting what is behind and straining toward 

what is ahead, I press on toward the goal to 

win the prize for which God has called me 

heavenward in Christ Jesus. Philippians 3:13

It is an honor to share and be a witness to your final round.

Love, love, love
Mom and Dad
 
P.S. Thank you for respecting Mike's wishes during his final round.
P.S.S. Mike would love to hear from you. If you would like to share any thoughts with him please feel free to do so in the comments below. He will be able to read them or we will read them to him as time permits.

Peace and blessings to you!

Not out of the woods . . .

Happy to see this when I got here on Thr.

It’s been a very rough week here for Mike. A CT scan showed some pneumonia and a small hole in his upper right lung. To treat that they turned up the oxygen a bit. That actually seems to be better as of this writing. This is a good thing because that means they can use the Cpap and BiPap to give his lungs a rest.

Heparin shots were started to ward off a Pulmonary Embolism while Mike wasn’t moving much. By Thursday he was able to get up and we walked down to the cafeteria. He had some ice cream before we walked back to the unit.

On Friday his cousin Derek visited and he was able to get outside to enjoy a bit of that beautiful late summer weather we are having. He also got to go to the cafeteria to get some more ice cream. The doctors were very happy to hear Mike got to go on a couple walks with Derek. Mike enjoyed his visit very much.

Today is a bit more of a fight. CO2 levels are rising. Hard to get the pain under control and still maintain oxygen levels and all that good stuff.

The doctor would like to move Mike to a higher care unit but he is resisting for now. He has agreed to use the BiPap for a while, especially when resting.

Mike is not out of the woods but wants you to know he is fighting. He would also like to thank the brothers who were able to help Katie today. He wishes he could be there with you but knows you are taking good care of her and helping her get done what needs to be done.

Mike asked me to take and then post this picture.

Mike wrote on a piece of paper to please add this caption "this is one of the many things I have to do to stay alive."

I was able to talk to his doctor today and she said that they did an x-ray this morning and it looked like things had improved a bit. Baby steps in the right direction. The picture above is with Mike on his BiPap. It is helping his lungs get some rest but he isn't able to communicate very well. After a few attempts at writing on paper he decided to do what he does best - text.

All of us parents have joked about texting our kids in the next room but I gotta tell ya, I was very much relieved that he was able to text me what he wanted to say and I could text him back - even though we were less than 2 feet away from each other. Hard to talk and hear with that thing on. Love it when technology comes through.

His oxygen sats are staying nicely at 95% or higher with this on so we are very thankful for that. Without it he goes down to around 84%.

I know the question we all have right now. How much time does Mike have left? Like you, I wish I had that crystal ball that tells us exactly what that answer is. Doctors can't answer that either. I'm frustrated because I thought we would know that better by now.

I had a conversation with Mike's NP the other day. I asked her if she thought Mike will get through this. She said of course we don't know for sure but he is such a fighter she believed if things could continue to move forward he would. I thanked her for her honesty. I shared that I believed that one of the blessings of CF is that it has caused us to look at mortality from the very beginning. For that I am thankful. She said she has wondered if that was really a blessing for CF families. I'm sure that it is different for each family but I assured her that for us it has been a gift.. I believe most Christians would agree.

I know that I have lived more days than not realizing that life is fleeting. I believe Mike has also.

Teach us to number our days aright,

that we may gain a heart of wisdom. Psalm 90:12

 

With each declining PFT report we have the opportunity to be aware of Mike's mortality. In so doing, it makes us all more aware of our own mortality.



 

Ecclesiastes 7:2 It is better to go to a house of mourning than to go to a house of feasting, for death is the destiny of every man;

the living should take this to heart.

So rather than go crazy and become obsessed with how much time he has left, Mike chooses to live out each day - kind of as if it were among his last. As the time becomes apparently closer to the time he will say good-bye, there is a temptation for those around him to become anxious and in so doing try to "fix" things. He wants you to know that he is doing everything he can endure to make the most of his time left.

"I just want everyone to appreciate

the time they have left with me."

In other words, he feels badly when someone suggests - no matter how well meaning - that if he would just eat more maybe he could stay out of the hospital longer, etc. If that were true that would mean there is something Mike could do to change what is happening and that is not truth. Thank you for understanding.

One step at a time. We'll keep you posted. Hope all is well with all of you.

Blessings to you!

9/16/14 Admission

Mike was admitted to D6/526 this afternoon. He asked me to please post an update. As you know he was admitted just a few weeks ago and spent a week here with pulmonary exacerbation and bowel obstruction. He went home on IVs that he did for another week. He wasn’t feeling that great but he and his NP decided to stop the IVs for a week. He would be admitted tomorrow then spend 9 days here and God willing be able to attend MaKayla’s wedding on September 27.

As we all know plans don’t always go as we would like. Mike started having quite a bit of pain on Saturday. This was a more intense pain then he has had in the past. He also started to feel like he was hyperventilating. So he needed to increase both his oxygen and pain meds. He couldn’t go but a few steps without O2 and feeling frantic. Not a feeling he has experienced before. By Sunday the bowel obstruction started to return. He was one miserable cookie.

He called down on Monday and they started to prepare for his arrival today. He hasn’t been able to get to far away from his oxygen concentrator so this has caused a few issues with back and leg pain. We loaded his portable oxygen tank and headed out. About 25 miles outside of Madison he ran out of air. Bummer.

Looking back (through the lens of thankfulness and having survived) we kind of must have looked like a Laurel and Hardy episode. Driving down the middle of the highway Mike pulling on the tubing . . .then digging in his pockets franticly . . . I’m trying to figure out if there is a hospital sign close . . . finally Mike says, “pull over, pull over…there, right  up there!” I took the exit and as he reached for his door handle and realized there was no way he could get out of the car and still breathe he says, “Go in the trunk and get my pain meds.” I finally got it.

He thought he had put some in his pocket – nope. Pain meds would slow him and his breathing down so we could make it the rest of the way. I got them and he took them and I floored it. By the time we hit the campus he had his window rolled down. I know that does absolutely no good but when you feel like you can’t get air – well, it doesn’t hurt anything. Then we just had to get him into the hospital. We discussed our plan quickly. I knew if we drove around back to the ER it would still take a bit to get to oxygen. We opted for admissions. I pulled in front of the doors and helped him to a bench, ran back to the car and sped to the parking deck. Of course, there was no parking on 2^nd, 3^rd, nope not even the 4^th floor. You got it – 5^th floor. I ran down five flights of stairs as fast as a fat old lady can go (what a spectacle I must have been) trying to be nonchalant, yeah right! Grabbed a wheel chair and pushed him into admissions. Literally, 10 minutes later he was on the floor and on oxygen.

His Oxygen sats were 89 and perked right back up to 94 quickly. Unfortunately, his heart was racing at 132 (after sitting silent on his bed). YIKES!

 

Stats: Fev1 - 17% 25/75 5%. Weight 113 lbs. Chest X-ray – lots of plugs.

Things are pretty rough for Mike right now. He is still fighting the slow moving intestines – probably a result of much needed pain medicine. Lots of chest pain – NP is making sure they are checking everything for possible causes. She did and EKG and she said it had declined since the last one they did. They are checking into that. CO2 levels were good at 45. PO2 was 29. His body is definitely struggling to get him some good O2! Troponin (heart) was good at <0 .02.="">

She prescribed some IV morphine and he is finally getting some relief from the pain. He will do golytely for a day or so and then switch once they get his sleepy intestines moving. She feels once he gets some fluids he will be good to start the antibiotics – Vanco, meripenim, and Tobra.

Many times I hear people say to me that they want to pray for Mike but they don’t know what to pray for. I made a list and shared it on Facebook. I will also share it here. A while back I felt the same way and these are a few of the things I came up with that I could pray for, for Mike. They are great things to pray over anyone when you aren’t sure what to pray for:

Patience - to endure this suffering
Strength - as this battle makes Mike and all of us who care for him weary
Comfort - Mike is in a lot of pain and discomfort
Understanding - Not only Mike's understanding of what God's plan is but also that other's understand their part in this also
Acceptance - of God's perfect plan and timing.
Joy - As Christians we are given joy and blessings in all things. Prayers that Mike can experience those joys
Peace - that surpasses all understanding. Peace that only God can give.
Trust - that Mike and all who love him continue to trust that God is working this all out for his and our good. All glory and honor be his now and forever.
Protection - of his soul - no one can snatch him from the Saviors hand
And of course for healing - thy will be done.

Acceptance - of God's perfect plan and timing.
Joy - As Christians we are given joy and blessings in all things. Prayers that Mike can experience those joys
Peace - that surpasses all understanding. Peace that only God can give.
Trust - that Mike and all who love him continue to trust that God is working this all out for his and our good. All glory and honor be his now and forever.
Protection - of his soul - no one can snatch him from the Saviors hand
And of course for healing - thy will be done.Acceptance - of God's perfect plan and timing- of God’s perfect plan and timing
Joy - As Christians we are given joy and blessings in all things. Prayers that Mike can experience those joys
Peace - that surpasses all understanding. Peace that only God can give.
Trust - that Mike and all who love him continue to trust that God is working this all out for his and our good. All glory and honor be his now and forever.
Protection - of his soul - no one can snatch him from the Saviors hand
And of course for healing - thy will be done.
I'll send updates when I can . . . Pastor Haugly was just here . Bless that man!
Peace – That surpasses all understanding. Peace that only God can give.
Trust – that Mike and all who love him continue to trust that God is working this all out for his and our good. All glory and honor be his now and forever.
Protection – of his soul – no one can snatch him from the Saviors hand
And of course healing – thy will be done.

I can't tell you all how much power there is in your prayers. Yesterday, I was a bit of a mess. My stomach felt like I was getting an ulcer. I contacted a few of my prayer warrior friends and put the requests above on Facebook. Today - through all the ups and downs - I had peace. Thank you all for your prayers and support.

Mike has a new doctor on his team. He specializes in palliative care. Balancing the pain meds and antibiotics can be tricky business.

Mike is winded and having trouble talking for long periods. He will jump on Facebook when he feels up to it. Hopefully, he will get some much needed rest.

We are so thankful for the staff at UW Madison’s D6/5 unit. They are so patient and thorough. God bless each and every one of them. Erin is on tonight – we are so thankful!

Blessings to you!

Home IVs and Soccer games

Quick update on Mike: he left the hospital earlier in the week and is doing IVs at home. His patience was out and he needed the change of scenery. He came home on two different IVs Vancomycin and Cefepime. He is also taking Cipro orally. He does them at 12, 8 and 4. So far so good. His bedroom looks like a closet at the pharmacy but he's workin' it.

Mike was able to get out and about today and is helping to grill some brats and burgers at the clubhouse. What a beautiful day!

Great day for a soccer tournament.

Richie scored his first goal as a high school student with a header in the first game.

Way to rock it Richie!!

I took about 700 pictures during the two games. Just can't help myself once I get out there. Too much fun!!

It really was pretty fun. And for that I am thankful. It's hard for me to admit this but it is getting pretty hard for me to leave the house these days. It's not something you plan or even think about. It just kind of creeps up on you.

A few babies later in life. Fewer and fewer peers.

More and more hospitalizations for Mike. Isolation at the hospital.

Money constraints so out and about less.

As CF progresses things can get awkward (to coin a word from this generation).

So I am thankful for:

parents who glanced my way, instead of avoiding eye contact . . .

the people who stopped to chat and say hi . . .

Linda, who came over to invite us to participate in a tailgate at next weeks tournament. . .

my sister-in-law who invited me to put my chair next to hers when Paul couldn't come to the game with me . . .

Thank you to all of you who helped me fight the temptation to be reclusive today. These little acts of kindness really do mean so much.

Ecclesiastes 7:3 Sorrow is better than laughter, because a sad face is good for the heart.

Blessings to you!

Obstruction

Happy Labor Day!

Mike was admitted to the hospital on Monday, August 28, 2014, after spending most of the prior weekend in pain, with what he suspected was a bowel obstruction.

Mike had been to the clinic on Friday. He has been coughing a lot and his nose has been running like crazy. His FEV1 was 27% and 25/75 was 3%. He and his doctor decided to try and keep him out for another week. He was put on Bactrim and another antibiotic and prednisone. Thankfully, his oxygen sats stayed above 92%.

Mike and I were able to go out for dinner on Friday. We went to Salty’s and had fish. On Saturday Mike started to have some uncomfortableness/pain in his stomach. It is hard to know when you have CF where that is coming from. Most CF patients live with chronic stomach discomfort or pain to some degree on a daily basis. Between the constant hunger and undigested food there is discomfort. It is hard to know if eating more will help (hunger) or eating less (bowel obstruction) is the thing to do.

He didn’t eat a whole lot all weekend. You kind of get into a catch 22. I sensed his electrolytes were getting out of whack. By Sunday he knew he needed to go in. It was just a matter of when and how.

I took Mike down Monday afternoon. His electrolytes were off and they started the liquid drano before I left (also known as golytely). Mike works so hard to gain weight and maintain it but this incident plummeted him down to 118 lbs. He struggled between being hungry and wanting to eat and fighting the obstruction. The constant coughing which increased the overall pain level was frustrating. Which brings us back to more of the catch 22.

Mike has needed to increase his pain meds, especially at night. In order to sleep, he needed a stronger drug to negate the pain to allow his body to fall into sleep. Most of us can relate to this. Some ache or pain that prevents us from falling asleep and we pop a couple ibuprofen or aspirin and voila – sleep. Pretty much same scenario only obviously on a larger scale.

Well, stronger pain meds have other side effects - like slowing down an already taxed digestive tract. Thus the catch 22.

Still coughing a lot and nose dripping constantly, Mike asked for another CT scan of his sinuses. Mike has had over 14 sinus surgeries. He grows polyps in his sinuses (10% of CF patients have this issue) that put pressure on his eyes and even sometimes his brain that cause headaches. The polyps also obstruct things and cause mucus to get trapped and become infected. This nasty infection then drips down into his lungs causing them to get re-infected. In the past, we have found that when they become blocked having surgery can give him up to a couple years of relief from the headaches, drainage and infection. It has been about 2 years since his last surgery.

The CT scan shows that his left side is completely blocked and his right side is bad but not as bad as the left. However, (deep breath here) Mike’s doctor does not feel like he could for sure survive the surgery. As we know, if they needed to intubate he would most likely not come off of the vent. Barring the vent situation she does not feel that the benefits of the surgery will outweigh the risks. In other words, having the surgery could be too much for him and send him into a downward spiral.

So there you have it. The good, the bad and the ugly we call today.

The good – another day of God’s Grace. Another day of living life to its fullest. Another day of our sisters and brothers in Christ holding Mike and all of us, up in prayer. It is a gift.

The bad – CF progresses.

The ugly – with the blessings of medicine come challenges. Mike has so much coming at him right now. Just the side effects of all the meds would be enough to put anyone over the edge. They wreak havoc on his body but most remarkably his emotions. Up one minute, down the next, anxiousness and peace, strength and weakness. Hard to regulate. The prayers of others and God’s divine Grace and intervention are the only things keeping Mike’s head above water as he continues to live each day while CF progresses.

And live he does. He is going to be here for a while. Perhaps a couple more years, perhaps not. He will be up and about sometimes and the next day he may be struggling to walk. He’s going to need your continued prayers and support. He needs your unquestionable understanding and forgiveness – it’s called love. He gets annoyed and impatient as he deals with this roller coaster ride of living he is on. He’s getting tired but he is still trying to make the best of what he has been given. He will continue to do all the things on his heart until his body tells him, no more.

Thank you to all who are still here for continuing to support Mike and all of us who love and care for him.

I will continue to update this blog as God gives me strength but quite frankly, there are some days when I’m not sure . . .

I know how much it means to this huge family to be aware of what is going on. It would be even more difficult to talk this all through to all those who, in love, want to understand what Mike is going through.

I am also aware of those who stop by from all over the world to watch Mike’s journey. When Mike was a small child it gave me great comfort to speak to the families I met while in the hospital about their journey’s with CF. It helped me to understand what they were going through. It helped me to be aware of what might be ahead….. etc. With HIPPA and isolation of CFers, blogs are one of the few ways we connect with each other. Just please remember, every person’s journey is different. The journey of children born now with CF will be so much different.

I would just ask that if you have a hard time with my blog that you step away for now. No condemnation. No judgment – on either side. I’ve always said I will keep it real and I am being true to that.

Lead by Mike’s example and God’s command, we are all living life to its fullest. Yes, some of this is sad, bad and ugly but God is so much bigger than CF. The majority is peace and love. There just isn’t space or time right now to share it all.

1 Corinthians 13:4-8

Love is patient love is kind. It does not envy, it does not boast, it is not proud. It is not rude, it is not self-seeking, it is not easily angered, it keeps no record of wrongs. Love does not delight in evil but rejoices with the truth. It always protects, always trusts, always hopes, always perseveres. Love never fails.

Love and peace to you.

Birthday Harley Style

Time for an update :) Mike was admitted back into the hospital on July 22. Yep, just a couple days shy of his birthday. He was really trying to make it until his birthday but he was feeling pretty crappy. The good news is his friends were kind enough to throw him a birthday bash the weekend before he went in.

It started with Katie coming to join in the fun early in the day:



David asked, "Why is Katie dressed like Mike."

Remember you can click on a photo to see it larger :)















Then it was out to the clubhouse to be joined by some friends for a few hour ride. Now, this may not sound like a big deal but let me tell you, it was. You see, it's a little precarious for Mike to plan on taking his bike on a ride. Depending on his health and the weather - things can really get messed up. Thankfully, his friends anticipated challenges and had a few back up plans. Someone took a trailer so that if Mike got tired he could hop in a truck and get a ride the rest of the way. Things like that made a day like this possible....and a day like that helps make CF bearable. That's what friends are for :)

Mike was very blessed that it was not humid and his lungs behaved so he was able to enjoy the ride.

Mike with his "brothers"

After the ride Mike was joined by other friends out at the clubhouse. He said it was one of the best birthdays yet.

On Tuesday Mike was admitted to the hospital. His lungs were at FEV1 of 26%. This was pretty good considering he stayed out of the hospital for almost three weeks.

I was able to take a half a day of vacation and visit Mike on his birthday. I stopped at Olive Garden where a nice young man named Bryan helped me. Mike really liked his dinner.

The hospital sent up a little cake and a bottle of sparkling juice. I surprised Mike and brought up a piece of cake from Bryanna's bakery.
Yum, was that good!


Mike had a little trouble with some swelling during his stay. Mostly in his left leg. They did an ultrasound and determined it wasn't a blood clot. They also did some blood work to make sure his kidney's were working. I was glad Erin, his favorite nurse (and most competent if you ask me) was working that night. They never really found out what caused it but it seems to be getting better.

The doctors were able to adjust some of Mike's meds and he feels like he has more energy. He even said he feels like he could dance again. Wow, that is an improvement.








Katie was able to go see Mike this past Friday. She had a special visitor for him.



Jessica was up from Texas! Still as pretty as ever!!

On Monday Mike plans to come home. His lungs were at 31% on Friday. So blessed the drugs are still working!!




All in all it was a good birthday. It got two thumbs up from Mike.

How the guy does it....I'll never know. He was out for a walk today and saw a quote he wanted me to share with you:

You were given this life because you are strong enough to live it

 

Amen to that....Amen to that.

 

 

Blessings to you!

Christmas

In a recent post, Mike's doc talked about how Mike was intubated at Christmas and how dangerous that was. I know many in the family have not been told about what happened the week before last Christmas so I will recap that here. I think it was a significant event that is weighing in on many of the decisions that are being made right now. I hope this helps you to understand where Mike has been and where he is right now. Mike is going to sign an order - Do Not Resuscitate. He has thought a long time about this decision and has decided that now is the time.

On December 18th I took Mike down to Madison to be admitted for another admission. He was pretty sick. He needed Oxygen but that wasn't anything new. I was glad he got down there when he did. He couldn't do PFTs right away as I recall but did them on Friday and I think his numbers were around 18 or 19%. I know I wrote this all down somewhere but I can't find it right now. I knew he needed some rest and it was right before Christmas so I opted not to go down to see him on Saturday but wait until Sunday. Mike just wanted to sleep. On Saturday evening I tried to call Mike and I didn't get an answer. I thought that was odd. A little while later, around 7:30 or 8 I spoke to Mike. I can't remember if he called me or if I called him but it was quickly apparent that he was having a hard time breathing and speaking and he was impatient. He told me that I needed to talk to the doctor. The ICU doctor came on the phone and said he was in Mike's room watching him closely. He said Mike had been having some hemoptysis (coughing up blood) and they were concerned. He said he had been following Mike for a couple of years and had never seen him so anxious. I said I was coming down and he said, "That would be a good idea." I started packing immediately. Just threw a few things into a bag quickly. Before I could leave he called me back and said he had decided to move Mike to ICU he would see me as soon as I got there. I thanked him and told him it would take me 90 minutes to get there. I grabbed my cell phone and jumped in the car and headed toward Madison.

On my way down to the hospital I called my brother David. I forgot all about the fact that he is in the Eastern time zone and it was late. I told him I was really concerned because I had never seen a CF patient in end-stage CF intubated and survive. I regretted not having talked to Mike about this situation to hear what his wishes would be if things did not go well.

You would think that the trip would have been miserable but I prayed and received the most incredible peace. Peace I have not experienced but a few times in my life. I was praising God and thankful for his blessings, thinking about how I had been to church earlier in the evening and the entire church had prayed for Mike. It had been a long time, maybe even years since I had asked for a prayer for Mike at the church. I was thankful that Pastor Haugly gave such a heartfelt prayer on Mike's behalf. And then my thoughts and peace were interrupted by the ringing of my cell phone. It was a nurse calling from the ICU. Mike's breathing was more labored and they wanted to intubate Mike she said. She said the doctor believed that Mike was bleeding out and that they didn't have much time. He wanted to bronch him but thought that by intubating him they would be ready to immediately try and fix the bleed if they were lucky enough to find it. I asked if I could talk to Mike and she gave him the phone. I knew he could hear me so I said, "Mike, do you want them to start before I get there?" Mike confirmed NO. I said, "Then tell them to wait, I am 30 minutes away." I hung up and sped up. I got there about 20 minutes later. I walked into the ICU unit and immediately knew which room was Mike's. It was the one with all the doctors and nurses standing outside the door. I walked close and they all walked into Mike's room and started to prep him. As I said hello and good-bye they were preparing for the bronch. Within a minute or two Mike was unconscious. I stayed and watched while they intubated Mike. I wondered if I would ever get to talk to him again.

Another doctor began the bronch. I watched with the other 3-4 doctors who were in the room. Interesting....no blood. I heard another doctor comment, "it must be in the lower lobes." She probed lower............I watched. Nothing. Yet another doctor in the room commented. Finally she probed to the base of one lung. Nothing. Then the doctor who had called me spoke, "That is amazing....there isn't any blood!" She continued to probe, entering his other lobe. No blood. "I expected to see so much blood we wouldn't even be able to find out where is was all coming from!" the doctor who had called me explained. By now all the doctors in the room were mystified. People, there was not one drop of blood. Not even a small trace to indicate what two of the doctors saw clearly in his room spit out on to his hands and tissues in all its bright red glory. NOTHING - no trace. A miracle. And right then and there I knew we were given a Christmas miracle. So many people praying. Pastor Haugly leading them in prayer just hours before all this began. No other explanation. A miracle. But Mike wasn't out of danger. He had to be pulled from the vent.

The doctor told me that this would all be traumatic for Mike's lungs and that he was going to keep him on the vent until the morning. That made me uncomfortable. Everything I had read, all the research I had done told me that the longer he was intubated the harder things would be. I trusted this man's judgment. I never left the room. I prayed. I waited. I watched. I prayed.

It was awful. They had to strap Mike down because even in his state of unconsciousness he would try and pull the breathing tube from his throat. I watched him struggle and gag and cough almost constantly. He had a really good grip on it once and I yelled for a nurse. They kept having to give him extra drugs to keep him down. The hours seemed like days until the morning. I knew the church would be praying again during the services. A new doctor was on the floor. They would try and wean him off the vent. WHAT? I was concerned. I knew that a wean wasn't going to work most likely. They tried and it didn't work. They said they would try again in an hour. I was weary with no sleep. By now I had gotten a hold of people and they were on their way. I knew the church was praying. All my brothers and sisters in Christ praying for Mike. I called my brother David to tell him that I remembered there was a CF woman just recently who had been vented and lived through it. Wanderlost. She made it. . . There was hope. Always hope.

They tried to wean again. It didn't work. I was broken. I was thankful Big Mike was there too. The doctor who had called me the night before came back. Boy was I glad to see him. He told Mike's nurse to prepare because he was pulling the tube in an hour. NO WEAN! I was glad. It made me anxious but my heart told me it was the only way. It seemed like an eternity. His nurse was awesome. They pulled the tube. Mike struggled a bit but he is a fighter. It was a long slow process. He was on the most oxygen he had ever been on. For about a week I wondered if he would ever get off the oxygen again. He was so weak. He didn't talk much for days and days.

The Van Deurzen's made the most awesome video for Mike. You can see it here:

One more round!">

Mike rallied. He spent Christmas in the hospital. Mike Sr. and Katie spent Christmas Eve with him and I was able to be with him Christmas Day. The best Christmas gift of all.

So the reason I share this with you now? It wasn't pretty. It truly was a miracle that Mike survived it all. As "Sue" said, the chances of Mike surviving another episode like that are not good. Mike has decided to sign a DNR order. Thank you for respecting his decision.

Mike has a goal. He wants to spend Christmas at home this year.

Mike and I had a couple of meetings today. One with a woman from a county agency called "Aging & Disability Resource Center of Fond du Lac County" and another with the Agnesian Hospice Center. We are looking at all options. It would be nice if Mike could spend some of his hospitalizations either in Fondy or at home. Both agencies said that he would qualify. It's all a matter of choices etc. Maybe they won't be able to help....maybe it isn't quite time . . . we shall see.

What was interesting was the look of shock on each of these women's faces as Mike described what a typical day looks like for him. One woman has been with her agency over 14 years, the other for a long time but I don't remember how long and neither one has experienced anyone with CF and no one struggling with all that Mike does....CF, Diabetes, pills, treatments . . . etc. This just seems so every day around here. But to hear their comments and see the look on their faces really reminds us how much these CF patients go through. Nope, not as bad as some...........but significant. Truly significant.

Mike left and went to his dad's house after the meetings. Because he could. This week that is possible. A blessing. Last weekend he even got on his motorcycle. Who would have ever thought. We are so blessed. So thankful for these moments.

Thank you for your continued prayers and support.
Blessings to you! Love, love, love . . .

P.S. To the Van Deurzen's . . . that video was awesome. What you did helped Mike to rally. He is so blessed to be a part of your lives. . . One More Round