Sunday, September 26, 2010

It's Official . . .

. . . I'm a soccer mom. Yikes. But as promised a Mike update first.

Mike update: Thank you to all those who have called, emailed, facebooked or gotten a hold of us somehow. We are glad you are here and we appreciate the support. Mike is having a hard time with patience. It is hard to spend as much time as he does, isolated, in a small room, 2 hours or more away from home. The woman in the room next door keeps him awake and has made rude comments that, of course, he can hear.

Mike went to take a walk yesterday and some teenagers stared at him when he got on the elevator. Mike has to wear a mask etc., when he leaves his room. You know, it's kind of like anything else, if I'm in a bar and someone treats me rudely or makes an inappropriate comment, I may get upset but I do take into consideration the fact that I am in a bar. Now, if I were at work and that happened I might not take it so lightly. Know what I mean? Mike doesn't appreciate rude stares and nasty comments while in a hospital. It is a hospital! I know he is sensitive to all these new things he has to do because of CF - oxygen, masks, ports and tubes in his chest and stomach - who wouldn't be. But truly I want to believe others look and wonder out of concern. It is just hard to deal with as we all know. We pray for Mike's patience.

He also didn't sleep well Friday night. He woke up with a stomach ache and had to stop the night feedings. This was Mike's facebook entry from yesterday:

Mike Vandeurzen: hates the weekends in the hospital they go by so slow

And his blog post from the day before he was admitted:

Mike Vandeurzen: u have nocked me down many times i have goten back up i no u come agen to nock me out but i will tuck my chin in put up my hands n fight i am a cf fighter n this round is mine

Many of you have asked about visitors. Yes, Mike can have visitors. Please, please, please be careful and use the antibacterial hand lotion outside his room and gown up to protect Mike. The cold and flu season is upon us and that stuff is all flying around the hospital. We need to keep it out of Mike's room. Go to this post for more info. Mike is bored right now and would appreciate the company. He said he feels badly when people visit because he figures they must be bored too. Let's help him stop feeling that way. I explained that when his dad and I come we love having the opportunity to spend time with him. We don't need to be entertained. We don't feel bored at all. I am always disappointed when I don't get to go.

To keep our CF freinds in the loop Mike's routine right now includes:
Up at around 5-6 for vitals. (He goes back to bed)

IV Tobra and Zosyn one is every 6 hours (4 x daily) and the other is 2 x daily.
Do the math on that one. Each IV runs about an hour with another 15-20 min flush. He is hooked up a good percentage of the day.
He does chest PT or IPV/Vest 4 times per day. Those each take about 15 - 30 minutes.
Aerosol treatments before like Pulmozyme, albuterol, HTS, saline, etc.
Insulin checks and other CF meds like enzymes etc. Throughout the day.
And then by 9-10 p.m. it is time to get him hooked up to the feeding tube that runs 8-10 hours and oxygen that runs all night.
This is a weekend-type day. During the week tests and procedures can interrupt and add to the schedule.

The best time of day for Mike is generally afternoons. He gets unhooked between 1 and 2 and usually has another Med around 4ish and then is unhooked until 7-8 p.m.

That's about all for now on Mike. Facebook him or drop him a card or a call if you get a chance. He so appreciates the support and pray for his continued patience through all this. It is hard to be so tied down. It is hard to be sick. It is hard. Peace. Peace. Peace. Love you.


Richard had his first soccer tournament yesterday and yep, I'm a soccer mom! What next an SUV? Just kidding. It was fun. The team took 1st place in their Division!! Go Panthers! Richard scored a goal in the first game that I missed. I was able to catch the last two games. As I walked up and saw all these moms in blankets, hats, and mittens I knew I was out of the car pool loop. Man, the things you gotta learn on the streets. Thankfully, by the time I got there people were shedding their mittens and hats. I will know next time. The kids played awesome. Better yet, I

was so impressed with their sportsmanship. (In the picture above Alissa snuck one past the goally and into the net!) Not one bad incident. The parents behaved very well too. ;) Lots of energy on the sidelines. I sat next to Regina so I would know what was going on. Thanks for the constant screaming, I mean updates :)!

This is the first year Richard has played soccer. He seems to really be enjoying it. He scored two goals at the game Wednesday night. I was so happy I had the day off and got to see him. The kids are all really working hard as a team. (Love the pic below - the boy can jump!) Parents click on any picture if you want to see it larger.

Proud soccer mom :)

P.S. We were so thankful to hear at church this morning that Ginger received her new lung. Blessings to you and your family for a continued speedy and full recovery. Peace.

Please consider being an organ donor. Blessings to you!

Thursday, September 23, 2010

Good news Bad news

Mike is in a small room. Not a very nice one this time. Wish he could get a decent room - the days are so long.

He had his PFTs today. FEV1 is at 28%. Good news is they haven't gone down any further than the last time. The bad news is his FEV1 is at 28%. Urgh. Hopefully, this course of IV antibiotics will help him get back up to 50% or highter. We always hope and pray for higher. His oxygen sats were at 91% when he got there so they gave him oxygen. He continues to need oxygen at night as well as the feeding tube. His weight wasn't too bad so hopefully, he can maintain and go up from here. That may help. He is tired and resting a lot. He is, as always, in isolation. You can connect with him on facebook or his cell phone. You can write to him here:

Mike Van Deurzen
C/O University Hospital and Clinics D6/518
600 Highland Avenue
Madison, WI 53792

He's not sure how long he will stay this time. He is going to take it one week at a time. He will decide if he will stay or come home on IVs after the first week.

CF SUCKS! So glad God is bigger than CF and still in control.

P.S. Other good news - his port was accessed successfully. No "drano" needed. That was a blessing.

Tuesday, September 21, 2010

The First CF Tear

Mike Update: Mike is all packed and ready to go. Missy took him out for dinner. Wings, at a little bar type restaurant. He won't eat much. Knowing I wanted to post a blog soon, I asked him what he would like me to tell people about how he feels. This conversation followed:

"So Mike, what should I tell people so they understand how you feel?" I said.

"Like crap?" he said softly, kind of half jokingly, propping himself up on the counter in the kitchen.

"Coughing a lot, and tight chested?" I offered for clarification. He nodded.

"Tired and hard to do stuff?" he nodded again.

"Not able to eat much because you are afraid it won't stay down?" he continued to nod.

"Just feeling yucky and sick, basically?"

He nodded and then with a smirk on his face he said, "And thankful that there are rest stops on the stairs." (landings) He smiled and kind of laughed shallowly not wanting to start coughing. He ALWAYS looks on the bright side. I love that boy.

So Mike is exhausted and the infection is out of control. Time for a tune-up. He will be admitted tomorrow. I will post his numbers in the next few days along with the address of the hospital if you would like to send him a card :). We appreciate your prayers and support.


I started to write a blog post the other day and didn't get back to it. I was remembering back to when we first found out Mike had CF. I was thinking about all this because it came to my mind how different my emotions have been on this CF journey. You would think that I have spent most of my life sad or in tears, but in actuality it is just the opposite. I have never had any trouble laughing. In fact, when I ran in to a co-worker the other day, a woman I had worked with for almost 10 years and haven't seen for a while now, we started to reminisce and instantly started laughing really hard. She said to me, "Gina, that is what I miss most about working with you, your laugh!" What a nice compliment. I love to laugh. I love life. I can have such a good time without much effort. But tears - now that's another story. Those have never come easily. How odd. I thought about this and I remembered my first tear about CF.

Mike had been admitted to the local hospital. He was three and a half months old. He was so sick. He was literally starving to death in my arms. The nurse did a sweat test. The results were inconclusive but questionable. I asked the head nurse if she could find me some information about the sweat test and CF. She brought back a medical book and I started to read. The book said that if Mike had CF he probably wouldn't live to be 18 years old. It said that the majority of children died well before then. The more I read, the more I knew this is what was wrong with my son. I wasn't instantly sad, as I was just so relieved that perhaps they could do something and he wouldn't die in my arms. He was so close. He had been through so much, but that is an entire blog post in itself for another time. I called my mom and she said she would come and watch Mike for a few hours so I could run home and pack. The doctors told me I needed to take him to a CF center which was 2 hours away. The doctor said they would be able to tell me if he had CF. They said to pack and plan to stay for at least 11 days.

As I was waiting for my mom to arrive, I played and comforted Mikey hoping he would fall asleep and stay asleep until I returned. I fed him and then sang him the song I sang to all my kids from the time I knew they were inside me until they were adults.

I am Jesus Little Lamb;
Every glad at heart I am,
For my shepherd gently guides me,
Knows my needs and well provides me,
Loves me every day the same,
Even calls me by my name.

Day by day at home away,
Jesus is my staff and stay.
When I hunger Jesus feeds me,
In to pleasant pastures leads me;
When I thrist, he bids me go
Where the quiet waters flow.

Who so happy as I am,
Even now the Shepherd's lamb?
And when my short life is ended . . .

I chocked, my voice got stuck and nothing more would come out. I didn't even have a diagnosis yet, but I knew, as a mother knows. I knew that Mikey had CF. A tear rolled down my cheek and I wiped it away. Maybe, just maybe, the CF center would be able to save him. I had hope.

Life became a whirlwind and our lives were changed dramatically. Breathing treatments, chest poundings and lots of medicine, doctor visits, and trips to the hospital. And he was alive. And I was thankful. And I am still thankful. There were no more tears. Not a one for years. Not until I watched the movie, Alex the Life of a Child. I cried so hard after watching that beautiful little girl lose her battle to CF at only nine years old.

Sometimes I feel like 27 years of emotion are trying to bubble up to the surface. Sometimes the tears just come now. Pain is, the difference between what is, and what we want it to be. Spencer Johnson. Such a telling quote. There is pain. I want CF to stop making my son and others suffer. Tears and hope. Hope for a cure. Hope for the future and tears. It is hard to talk about CF now without tears. But I still have hope. And I still love life. And I still love to laugh really hard. Mostly, because I can. I am so blessed. But there is pain in watching your child suffer, even if he never complains. There is still more hope than pain and I am thankful. Thankful that the medications are still able to help Mike feel "better." Thankful that I have friends like you who encourage me and help me and Mike on this journey. Thankful that God continues to guide us on this journey.

I have small journals where I have recorded things I am thankful for. I have a book I carry in my purse or briefcase of “happy” pictures. Pictures of people and things that make me smile. Sometimes I have to LOOK for the blessings among the pain and suffering. It is always right there ready to be grasped, just within reach, there for the taking –if only I choose to reach out and grasp it. I am renewed and refueled. My spirit is strengthened and I am full. Thankful. Hopeful. Grateful. Peace.

P.S. And how does the hymn end?

And when my short life is ended,
By his angel hosts attended,
He will fold me to his breast,
There within his arms to rest.

I am comforted.
Blessings to you!

Friday, September 3, 2010

No mama, Mikey is SICK!

I’m so sorry I missed the comment/question from my post “Am I going to die from CF?” SSK wrote, “I am fielding these questions from one of our older children regarding our little guy's CF. Did you have these type of questions from your child's older siblings? How did you handle it? Blessings....” Yes, I have had these questions and I approached them the same way I did Mike’s (my child with CF) similar questions. It is funny, really, how smart and intuitive children are. They really know and see so much more than we would expect. Oddly, I can remember the very first conversation I had with Katie about CF. Probably because it was so profound and she was so young. Katie and Mike are less than 13 months apart in age. She really doesn’t know life without her brother Mike. They were extremely close as youngsters, almost inseparable, except for the CF, until about age 12. Katie was extremely articulate at a very young age. It was amazing that Mike ever learned to talk at all because Katie always wanted to do all the talking for everyone – especially Mike.

Anyway, this particular conversation happened when Katie was between 3 and 4. Mike would have been 2-3. I had just finished giving him therapy (pounding on his chest for about 35-40 minutes) – you all remember the days of manual chest poundings several times a day. Mike was getting sick and we were in what I termed “crunch mode.” Crunch mode meant Mike was coughing more and more and I was pounding 3-4 times a day and sometimes in the middle of the night if he couldn’t stop coughing. We didn’t have pulmozyme in those days. We were finished pounding and Mike ran off to play. I was sitting on the floor. Katie walked over and said, “Mommy, Mikey is sick.” And I said, “Yes, honey, Mikey is sick,” very nonchalantly pretending it was no big deal. Katie put her arm around my shoulder and said, in a very low, informational tone , “No, mama, Mikey is SICK!” I looked up at her and I said, “Yes, honey, Mikey is sick,” in a very compassionate voice. Our eyes met and there was an unsaid understanding between us that he wasn’t just “normal” sick but SICK. She knew. She understood. But the conversation that followed was truly amazing and again I can only praise and thank God for giving me the words and leading the conversation to where it went.

“Mommy, if you can’t make Mikey better, than we will take him to the doctor and the doctor will make him all better?” she said, with a hopeful tone. She had endured many hours at doctor’s offices being patient while Mike endured tests and procedures. “Yes, if Mikey gets sick and Mom can’t make him better then we will take him to the doctor,” I said as reassuringly as possible. “And mama,” she continued in a somewhat matter of fact yet inquisitive voice, “if the doctor can’t make Mike better than we will take him to the hospital and the hospital will make him all better?” Katie had also watched mom disappear for weeks at a time as I took Mike to the hospital and she would come to visit. I was amazed at how well she understood the routine. I was almost saddened and sickened that this “routine” was obviously seeming “normal” to her. Was I really talking to a 3-4 year old? “Yes, honey,” I continued to reassure her, “when the doctor can’t make Mikey all better we will take him to the hospital and they will make him all better." And then came the question I was unprepared to hear from a child so young, “But mama, if the hospital can’t make Mikey all better, who will make Mikey all better?” Her voice was very serious as those big blue eyes pierced my soul waiting to hear the comfort that all was well. In a very cheerful yet decisive voice I said slowly, “Well, when mama, and the doctor, and the hospital, can’t make Mikey better, then Jesus will take Mikey and make him all better!” A big smile came across her face and she almost jumped off the floor with excitement. She said in a jovial voice, “Ohhhhh, Jesus will make him all better! OK, mom!” Almost as if she were thinking, oh, of course, how did I forget? She ran off to play.

She was comforted that God was in control. She never asked anymore questions. It was understood. She is 28 and now she comforts me with similar words. I can’t tell you how reassured this makes me. When God gives you the “right” words there isn’t a need for a lot of words. I believe she never brought it up much after that because she has a strong faith and she saw the same in Mike and me – she understood. I’m sure the understanding of those words has changed as her faith has grown and matured but there was never a need for further explanation. The words would have been the same. The words are the same. 1 Corinthians 2:13 “This is what we speak, not in words taught us by human wisdom but in words taught by the Spirit, expressing spiritual truths in spiritual words.”

I believe anyone could use similar words for any age of child. My son Richie is 10 and he is just beginning to ask questions about why Mike is in the hospital so much. Because Mike is an adult and takes himself to many of the doctor and hospital visits, my younger two haven’t felt the impact like Katie did. I haven’t had this conversation with Richie or David yet but getting close with Richard. I anticipate the conversation to be similar. God willing, He will give me the right words.

Skk, I hope this helps you. One way or another Jesus will make it all better. I don’t know what the future holds but I know who holds the future. God is working this all out according to His plan. We are not sure if that means a transplant, or a cure here on earth or in heaven but we are confident in His plan. Peace. I am thankful for the continued strengthening God supplies me through His Word. He supplies us daily. Blessings to you!