Saturday, August 2, 2014

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!

Wednesday, July 2, 2014


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. 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

Thursday, June 26, 2014

He Rallies!

Mike will be coming home tomorrow. His FEV1 was at 32% today. It has been a long time since he has seen those numbers. His small airways are at 9%.

His six-minute walk was great. O2 stayed at or above 97% (without oxygen).

See what happens when folks help lift up your arms?!!

Thanks to all of you for all your prayers and encouragement. We'll keep you posted. Mike is looking forward to getting out and about. Maybe even a motorcycle ride.

Praising God for his continued blessings,
Praising God for you!

Tuesday, June 24, 2014

Mt. Rushmore

Dear Mike,

Today is our last day in Rapid City, South Dakota. We are having a good time. Here are some pictures so you and grandma can see what we've been up to. She doesn't go on Facebook so maybe she can see them here:

I know you can relate to this picture. After a tour of a mine the boys are panning for gold. David wants to get rich so he can spend lots of money on video games.

Here we all are at our destination - Mt. Rushmore. So amazing what man can do when he puts his mind to something.

This one was taken at the Bad Lands. You know how much I like heights (NOT) so I was always behind the camera and away from the edge.

Your brothers are very happy that you got to bungee jump when you were a kid. They used this against me so they could go for a helicopter ride.

Today is my birthday and Paul took me a few blocks from the hotel to a rose garden so I could take some pictures. Flowers remind me of God's promise of heaven - beautiful. My favorite is the one on the top. So pretty.

I am thankful for this time away. It gives me time to reflect on life and ponder the things deep in my heart and mind. I'm still thinking about some of the conversations we have had. Some of the things you ponder too.

Mike, I know you know why we are here. That is huge. So many people struggle with this initial question. You know we are here to glorify God with our lives.

You wonder why God could allow you to suffer with CF. Could the answer be the same? Remember the parable of the blind man (John 9)? The disciples asked Jesus whose sin was this, his or his parents?

 3“Neither this man nor his parents sinned,” said Jesus,
“but this happened so that the work of God might be displayed in his life. 4As long as it is day, we must do the work of him who sent me.”

But you struggle with this because you are not perfect. I don't think that blind man was either. None of us are. Jesus did not come for the perfect. He tells us that it is the sick who need a doctor. He came for you and for me and we are far from perfect. You doubt God's love. I have doubted God's love. Everyone has doubted God's love at some point on this journey.

People are drawn to you Mike. They see you are suffering and they admire your courage and strength. You continue to persevere because of your faith. Psalm 34:18 tells us "The Lord is near to those who have a broken heart." The Lord is near you. He hears and sees your broken heart. God doesn't ask for perfection. He asks for us. He wants you. Just the way you are. We are redeemed through the salvation granted to us by grace through the salvation that Jesus won for us. Ephesians 2:8-9 tells us "For it is by grace you have been saved through faith, and this not of yourselves; it is the gift of God, not by works, lest anyone should boast."

So remember the things you have always known. It is not about what you have done or left undone. It is all about what Jesus has done for you. You don't need to think about anything but what Jesus has given you freely through his grace - forgiveness and eternal life.

Let God's perfect peace surround you and lift you up at all times. When you are tempted fall back on His words.

I miss you. I can't wait to see you. Come home soon.

Blessings to you.

Stolen Moments

Mike is on DAY 11 of his stay at the Madison Hilton hospital. He has been very blessed this stay with lots of encouragement. Many visitors have come in person to help Mike hold up his arms through this battle. Others are strengthening him through the cards they have sent. Mike asked me to tell you thanks! It means a lot to him.

On Friday, Mike got some special visitors. Uncle David (his godfather) drove up from Tennessee and surprised him with a visit. While they were visiting 15 of the "brothers" rode in on their Harleys to steal Mike away. Kind of hard to be sneaky with a group that big but security offered them a place to park their bikes together and they were able to grab Mike and take him a few blocks away for some non-hospital food - wings - his favorite. What a treat after a week of hospital food and isolation. What very special men these are that continue to support Mike. Again, if anyone snapped a picture, I'd love to have a copy :)

After the brothers left, David and Mike were able to do some more visiting before it was time for Mike to get back to the regimen of breathing treatments, therapy, drugs, etc. Mike said he was able to discuss some things with David and that was a blessing. Angie also paid a visit. Always good to see a fellow CFer. All in all a very nice break in the middle of a long stay.

You know, for many of us, it's not easy to go visit someone in the hospital. It's not easy to write that card of encouragement. We want to....really we do. But then those insecurities creep in....the ones that say - "I'll say something dumb and probably make him feel worse."
"I hate hospitals, I'll wait until he comes home to visit him."
"This is what pastors are for....they know what to say. I don't know what to say to someone facing what he is . . ."
"I just don't know what to do. I'm not good at this stuff."

You know what? We've all had these thoughts - we're all human. But some will push beyond their comfort zone and insecurities of feeling like "I'm not enough" and just do it. They might not have eloquent words to say....they may say nothing at all. But they came  or sent a card  or ordered take out from a nearby restaurant and had it delivered to Mike or they messaged him on Facebook or added Mike to their Netflix account or said a silent prayer. In some way, they "showed up" and that makes a difference. It makes a difference in Mike's life. It makes a difference in this world. It makes a difference. It made Mike's day a little brighter, his load a little lighter to carry....a bright spot among so many shadows. Stolen moments that take Mike's mind off of the reality of CF even if only for a moment. That is a blessing.

God bless you for your acts of kindness!

Mike's carbon dioxide level was slightly above normal when he was admitted. His doctor's have decided that it would be good for him to get used to using the bipap machine at night. The first couple of nights were a little rough but it is getting better. On Thursday he will do PFTs again and repeat the 6 minute walk. We'll update you when we have more news.

Blessings to you!

Sunday, June 15, 2014

Talking about Life Here - Part II

Sue is one of Mike's favorite caregivers. She tells him the truth and helps him make decisions. She understands his learning disabilities and presents things in a way that he can understand them. He respects and adores her. I think she has a lot of respect for him also and treats him that way.

Mike explained to Sue, "I really don't think I want a transplant. I don't. I'm much more stressed constantly when I'm thinking about it and after talking with a bunch of people and you too and hearing that I won't be struggling for air and will be comfortable... I think, you know, that's not a bad way to go. I'll still come do IVs for 2-3 weeks in the hospital - maybe not all in the hospital but I'm still up for this. I don't have any issues with that at all."

But Mike also wanted to know where he was at. He feels like sometimes when he comes in and gets a new resident or something they kind of freak and get all up in his stuff and say stuff like, "You need to make a decision on transplant right now because you're really bad!" Then Mike starts asking questions (who wouldn't) and he gets answers like, "Oh, you could have years." Mike knows he doesn't have another 10 years. "Let's get real," he says. "But I don't think I'm going to die in 6 months either."

Sue very professionally explained to Mike that she has one other patient who is as sick as Mike. They are about the same age and neither one wants a transplant as treatment for their CF. She explained that if Mike would have continued where he was and not come in for treatment and not choose to do anything but be comfortable, he wouldn't make it very long. "At 18% lung capacity, if you choose not to get treated with antibiotics, I feel that your life will be short. I'm talking like weeks. But because you choose to be treated, through antibiotics and airway clearance, you can percolate on for a while. I just can't guarantee that it will ever get better than this. So this is life as you know it. Coming in frequently. Us kind of figuring out outpatient plans, KWIM? But if you get influenza or something like that that could basically knock you down. That could be life threatening to you."

She told him it will depend on how aggressive he wants to be with all of this. He can't wait too long to come in once he feels poorly. She said they can keep things stable. He has very good muscle mass and is in fairly good shape outside of his CF. She said pulmonary rehab may help. Mike shared that he has a brother who is 75 going through rehab right now and they take walks together. (I would love a picture of that if anyone can get me one, readers). That's something to look at when he is cooped up in the winter.

Sue spent some time going over the benefits of a transplant with Mike. The good, the bad and the ugly. Mike confirmed that he doesn't want one. He thinks his body is telling him it wouldn't be that great. He knows his sinus infections could re-infect his new lungs because he will never get rid of the germs from there. She agreed that could happen. She told him most CF patients do really well with transplant. Sue will never push anyone one way or another. She wants to be sure she is giving her patients information so they can make good decisions.

Sue wanted to be sure that Mike and others know that he is not giving up because he isn't choosing transplant. "You're not losing the battle. You're just choosing the battle you are fighting. So if we're talking antibiotics for infection that's out of our control, at a certain level there isn't going to be anything else that we can do. It isn't going to be YOU saying I don't want to do this anymore, it's your body saying we're not doing it anymore. Your body just won't be up for it because .... to be honest I never feel like you guys know how sick you are. You don't. You're walking around with 18% lung function. That's barely compatible with like, life. KWIM? How much lower can you go? You know? Not too much. You're probably the lowest guy and one other that I have right now. So 18 is getting low. We will do whatever we can to help you do the things you want to do. But don't ever feel bad about being like I'm not into this anymore. Because I'm doing this for you. You're not doing this for me. I'm doing it to help you do the things you want to do but you're the one living this not me. You're choosing the battle you are fighting. Are we going to battle the infection or are we just going to treat the symptoms at some point and let the infection do what it wants. None of us is getting out of here alive. There's a 100% mortality rate amongst all of us. It's the living that counts and your attitude in doing that."

I had so much peace leaving that appointment. Mike has choices. It is a blessing that he continues to have choices. Yes, doors are closing but there is still so much to be thankful for and Mike chooses to be thankful. He is at peace with the battles he chooses to fight.

I hope this hasn't made you sad. Mike is at peace. He has hope and I hope you do too.

There are some take aways here. It wouldn't be good for Mike to catch the flu or a cold. Please be careful if you will be around him. Smoke is really bad - maybe worse than a virus in many respects. If you aren't able to stop smoking around Mike please don't ask him to participate.

I want to share something with you from scripture, I hope you don't mind.
Do you remember how Moses lead the children of Israel out of slavery and into the promised land? They spent many years wandering in the dessert. This particular account along their journey seems appropriate to share here:

Exodus 17: 8-13
The Amalekites came and attacked the Israelites at Rephidim. Moses said to Joshua, "Choose some of our men and go out to fight the Amalekites. Tomorrow I will stand on top of the hill with the staff of God in my hands."

So Joshua fought the Amalekites as Moses had ordered, and Moses, Aaron and Hur went to the top of the hill. As long as Moses held up his hands, the Israelites were winning, but whenever he lowered his hands, the Amalekites were winning. When Moses' hands grew tired, they (Aaron and Hur) took a stone and put it under him and he sat on it. Aaron and Hur held his hands up -- one on one side, one on the other -- so that his hands remained steady till sunset. So Joshua overcame the Amalekite army with the sword.

Exodus 17:15-16
Moses built an altar and called it The Lord is my Banner. He said, "For hands were lifted up to the throne of the Lord. The Lord will be at war against the Amalekites from generation to generation."

I think Mike needs an Aaron and a Hur.
Could you get him a chair? Could you help Mike hold up his hands? This CF battle wages on but the war is not over.

I'm not angry anymore. The anger stemmed from frustration. Frustration of not knowing how I could help. It's gone because I know what I can do. I can help Mike hold up his hands until he's done all the things he wants to do. Until his hands and body tell him we're done. Then I'll take his hands and hold them....I'll hold them until Jesus comes and takes them from me and leads him to be with Him. It's all good people. It's all good. Peace.

Blessings to you.
Love, love, love

Saturday, June 14, 2014

No Drama Please...We're talking About Life Here

There's a lot going on right now. So much information to sort through and process. Once again, I have turned to my blog to be able to update those we love and those who know and love Mike. That's it. No drama. This blog thing is all about living with CF.

Mike is having a hard time talking. He had a couple friends stop by today. He said talking made him tired. He said I should post so that everyone could get the same information at the same time and then he wouldn't have to try and talk so much. If he were to try and explain it all himself he would never have enough air. I don't think I would either. We are blessed with a VERY large family. I can see that you have all been checking in so I will do my best to recap his appointment here.

When Mike first gets to clinic he does PFTs. You saw the results posted yesterday. FEV1 18%. Then he has his vitals taken. It was notable that his heart rate was 129 while resting. No wonder he is so tired. His heart thinks it is running a non-stop marathon 24/7. When asked which is more troublesome he said the shortness of breath versus the coughing. His doc seemed surprised at that. He said his chest was tight and that he was having a hard time getting it to expand. The nasal stuff was better since they put him on Claritin.

The Doc/Nurse Practitioner (we'll call her Sue) said she would have Mike do a six minute walk today and then check it again before he goes home to see if there is a difference. This shows where his oxygen is at while exerting. They did the test and he needed 3 liters of oxygen to complete the test. About what he uses when he sleeps she noted. They will check this again before he goes home.

Sue asked if he was using his pain medicine. She said the reason she asks is because pain medicine suppresses the cough and helps with shortness of breath.

We talked about hospice care and palliative care and she explained what those mean. To back up just a moment, I had called the clinic earlier in the week to ask what our options were. This is all getting pretty overwhelming and we may need some help I told her (Cindy). Mike would like to spend more time at home but his regimen is so intense it is hard to handle alone.

Here is what Sue said:
Palliative care is doing all the things we’re still doing but also being more aggressive with your symptoms. Maybe with this pain is morphine a better option for you versus this pain medicine. Most people are like, well the pain medicine helps me but I also want to make sure I’m not cloudy. I’m not sleeping all the time – that’s not perfect either. So we still want to function but I just want to feel better. So what medicine is out there to help me with my symptoms? So that’s what a lot of palliative care approaches will do.

Hospice does let us continue IVs on a lot of people. But there are some things they would want to limit. Things like for example something we should talk about this admission. You come in and what if you get worse while you are here. Do you want me to put a breathing tube down you and be on a ventilator? Is that something you want?

Mike: I don’t know.

Sue: Right. But those are things to talk about.

Mom: He wants to know what that would mean. What does that look like?

Sue: Right, what does that look like? And to be honest, it doesn’t look good. You know what I mean. I think that, to put a breathing tube on someone with 18% lung function, the chances of you coming off the ventilator are very slim. If it is something like when you got intubated over night because of the blood or whatever. I mean even intubating you for that small moment was risky business.

Sue: And the reason that is…the ventilator…your lungs like the ventilator a whole lot better than they like you. Because the vent gives your lungs some good breathes and also then your body can relax because it doesn’t have to work so hard. Then all of sudden you pull that breathing tube and you are struggling. When you have chronic pneumonia….you get better, you come back, you get better, you come back, you have secretions . . . that situation is not going to change. You know what I mean? So then we end up with Mike VanDeurzen on a ventilator and then we’re going to look at your parents and ask them, “What do you want us to do.” The options at that point would be pull it or you are going to be sedated because no one can be awake at that point unless you are going to pull it. So what we would do is wean you off the ventilator with lots of morphine and you wouldn’t wake up again. And that’s that.

The other option is to put a tracheotomy right here (points), wake you up and move the breathing tube from here to here, but I can’t guarantee that you will ever leave this hospital. And you’ll likely go to a ventilator facility where you can be taken care of. Because I can’t send you home with a ventilator. I just feel like knowing you that’s not what you want.

So when patients get to this sort of a point in their lives and they're trying to decide what the plan is 1. We’ve done the transplant eval which is one road. A transplant isn’t for you and it isn’t for everybody. It’s a personal decision.
2. Then we go to another option which is doing what we are doing, but I would say no breathing tube. Because I will lengthen your life with a breathing tube but I’m not going to change any quality. I’m lengthening your life while you are sedated. And making your mom and dad make the decisions about you. It’s not going to be you making decisions because you’ll never be awake enough to do that.

So I tell patients I really discourage a breathing tube at this point in the game unless we are going full court press to transplant. If you are saying yes, I want a transplant, then I will put a breathing tube in you and wait for the transplant to come. But if that’s not the road we are traveling then a breathing tube is not the way to go. We can make you comfortable without the breathing tube and the end will be the same. Right?
Mike: Right.

Sue went on to explain that to keep him alert and comfortable they can use a bipap mask to give a lot of extra pressure without putting a breathing tube down. She explained that is what an end with Cystic Fibrosis would look like. A lot of CF patients and their families think that they will be struggling for air because that's kind of how life has been to a certain point. But the end really is that carbon dioxide levels get too high. And when that happens you get sleepy and you fall asleep and you don't wake up again. Which is how it should be. Sue said they never let patients struggle.

Sue went on to say that the thing with Mike, is that he rallies. He comes in and gets antibiotics and then gets better. It just doesn't last very long. The drugs still work for Mike but they don't for all patients.

I was hoping to finish this tonight but it is getting late and I am getting tired. I think I will need to finish tomorrow. Sorry about that guys. I'll try and do it in the morning. We received so much information and it took me a while to process it all down on paper. I knew it would benefit everyone to hear it. Then we went to Gage Michael Kratz's birthday party! The best grandson in the world is turning 11 on Tuesday. The boys had such a good time.

I'll be back with more tomorrow. Thanks for checking in. Mike is resting comfortably tonight. Peace.

Blessings to you.

Dear Mike,
I don't have to tell you how to live . . .you teach me that on a daily basis. I love you. I admire your courage and strength. Thanks for being so amazing. I miss you and I want you to know I'm right here if you need me. I'm just a phone call and short drive away. Please let me know if you need anything. Moms love to help but we don't want to be over bearing so we wait to be asked. . . please ask. Did I mention I love you? I do.

David is a stink. But you knew that. We still love him. I won't bring him down this time. He's a cute little stink.

Richie felt badly because he forgot to take your bag to the car before he left for his friends when you were getting ready to go to the hospital. Teenagers are forgetful. You were too. I wasn't. I was always a mom. K. Love you. Night!