Saturday, February 26, 2011

I am so grateful for normal days

Julie is doing so well today.  It is days like this that I forget she has a very serious chronic illness.  We spent the day together picking out tile for the basement.  We are in the LONG process of finishing it.  Luckily we are at the end stages.  I am so excited to have a truely dust free home for my wife.  It has been long overdue.  Her brother Matt and his girlfriend came over today while we were away for a few hours.  On the way home, Julie ran out of oxygen, but insisted I continue in our quest to the McDonalds drive through.  She loves fast food, and it's a good thing since her body needs more complex carbs.  It is working so hard that high fat foods are actually good for her; she can utilize more energy from them.  In the words of her nurse at the transplant clinic: "Burger king is your friend."  Sounds sort of backwards doesn't it?

We spent the rest of the day watching home videos of her and her brothers.  It is so great to see her as a child.  She is so cute and has so many of the same mannerisms.  She was very active, and only those close to her knew the specifics of her disease.  Today it is on her sleeve.  One of the videos was of a dance recital when she was 8 or 10.  She had a cough attack after and her dad was asking her questions.  It was a reminder to me that her disease was affecting her even as a small child.

Thursday, February 24, 2011

November 15, 2010

I've been admitted in the hospital for a week now; that means a week away from my kids.   Unfortunately they have attracted a cold and I can't afford to get sick.  I'd rather be safe then sorry.  I miss them very much.  Dave sent me a video he took of them this morning.  Ben was dancing and Jack was trying to find the rhythm.  They know by now when dad gets his phone out he's going to take their video or talk to mommy.  I felt when Ben was dancing, he was dancing as though he knew somewhere I was watching.  Jack finally got into it enough to jump up and down then Dave yelled, "say hi to mommy".  Jack immediately stopped and ran over to the phone, as if I was there and yelled "Mom!"

video

Wednesday, February 23, 2011

Stressed?? No I'm good.

It takes quite a bit to stress me out. Anyone who knows me knows I fly by the seat of my pants. When you are married to someone however, the spouse knows just what to say to heighten stress. For example, over Thanksgiving weekend we had some very cold snowstorms blow through Salt Lake. I snowplow on the weekends and Julie and the boys keep me company. One night it was extremely cold and we made our way to costco to pick up a pallet of salt (approx 2500 lbs). Normally something this heavy isn't going to budge. To my surprise, when I started plowing the Dans parking lot on 70th south the pallet was sliding back and forth. It took one time of giving it too much gas and the pallet slid into my tailgate an just crunched it! After getting out of the truck and seeing the damage I had done, I had accepted it and was ready to deal with it. After getting into the truck and telling Julie what happened, she simply said, "You tend to break a lot of things." I'm laughing as I write it now, but at the time I was in utter confusion as to why she would say that. If you know Julie at all, chances are you are laughing out loud.

The night before last I tossed and turned thinking about the possibility of being out of town for work when we end up getting the call. I have put this in the back of my mind until now. As a result I had a talk with Julie that morning before I left for the airport. I let her know how much I loved her and that if she got the call while I was gone this time or ever, I would be waiting for her in recovery. It's hard to think that she might have to go in without me there. I said what I needed to say should that happen. As I was sleeping I was waking up feeling this unfamiliar anxiety that it could be sooner than we think. Since we don't get much of updates from the center, everything gets placed in the back of our minds; well at least my mind. I'm sure Julie thinks about it a lot more than I do. Things haven't really changed for us. We are still battling her CF with nebs and CPT (I pound on her back to break up the mucus). She is relatively calm about all of this and it's a huge blessing to the both of us. I am convinced the Lord has heard our prayers and is truly carrying the weight for us. "For my yoke is easy and my burden is light."

Sunday, February 20, 2011

February 10, 2011

The kind of wife I want for my boys is someone who will love them and care for them the way I do. I would want her to give them hugs and tell them she is proud of them. So whenever I think of that, it reminds me to be that kind of wife for my husband. I'm sure that is what my mother n' law Marilyn would want. I adore Dave like she does, I think a man will always need the nurturing side of a woman...I just thought of Dave ready to board his plane tonight in the airport ,with a cold, eating trail mix for dinner and would probably love for his wife to nurture him when he got home.

January 29, 2011

When I was praying the other night I had an overwhelming feeling of what Christ may have been feeling when he was praying to the Father before he was taken away to be resurrected. I can't even compare to what he went through, it would be insufficient to compare. What I do know is that I have suffered my 31 years of living with this disease. As time goes on and the sicker I get, the more intense life gets. In the Garden of Gethsemane Christ suffered for all of us so he knows what I go through. Someone is going to call me at anytime and I may have the possibility of dying. Christ prayed to the Father to forgive His people, he bled from every pore, understood, and felt what we were all going through.

January 27, 2011

I was put on the double transplant wait list on Monday. I am grateful for the opportunity for a new and healthier life. I can only imagine what it will be like to be able to run and inhale a big deep breath again. I haven't felt like that since I was a teenager. The cool thing is I won't have CF in my lungs anymore and that is something I have never experienced. I have always suffered with lung disease my whole life. It will be great not to have to cough or feel congested. I will have to admit I am nervous about the surgery and terrified for the call. I feel like I am getting sick again and I get depressed whenever I get sick lately. I think that is the time that the devil tries to take over my mind. I can't help but feel depressed and worried and I cry.
I think about things way to much when I get sick, for example, this weekend I was a wreck when I went out with my friends Heidi and Lindsay. I had to go to the bathroom and have a good cry in the middle of dinner.

January 26, 2011

Jack said "mouth" perfectly tonight. It's so fun to hear his little voice say words. He continued on to point to my nose and say, "Noshe", "eyesh" and "earsh". Jack loves to talk, he will go around and tell you everyone's name: mam (mom), Nan (Mary), Den (Ben) and dad. "Ben is becoming more and more verbal everyday. He will say, "oh gone" or "uh ohh", light is "ga ga got", banana is "na na", or what's that is "tha tha" Ben will want to say words or sing by chomping his teeth up and down in silence. When he looks through the book, "Brown bear brown bear" by Eric Carle, he will point to an animal then look at your lips and wait for you to say it. He is starting to "rrrahr" when he points at the bear now. Jack will put the Brown bear puzzle together and will say all the animals names and make their sounds. He would play that puzzle all day if you would let him. Jack is so interactive, what a great quality. He's so involved and loves attention and is very playful. I think a favorite game that the both boys have always liked is to jump in their cribs while we sit in the rocking chair and throw back and forth blankets and stuffed animals at each others faces. We do this in a very light and playful matter and they love it, they laugh so hard. This is usually played in the evening before bedtime so they get really giggly around that time.

January 15, 2011

I will be listed any day now for a double lung transplant. I think at this time I need to be positive, optimistic, have a good attitude, and try to serve others as much as I can. My family: my parents and Daves parents and closest friends: Cassie Pack, Heidi Duehlmeier, Lindsay Ogden, BJ Butler, Dan Kormylo, Crieghton Scott and more are putting together a fund raiser and awareness for my transplant. Paul Cardall has offered to do a benefit concert. Royal Bliss said they would do a benefit concert. I think it's amazing who comes out of the woodwork when something like this happens. I am apprecitive and grateful.

January 8, 2011

This morning it was so cute, Jack came up to me to have me wipe the sticky syrup off of his hand from breakfast pancakes. Then in his own words he asked, "whas noshe"? Pointing to his nose looking right at my oxygen tubing. After that Ben came up to me, pointing to his blue plastic golf club to tell me what that was. Their so cute at this age they are growing and developing so fast right now. They just turned 2 on December 11th. Yesterday I just got them a 24" by 36" puzzle and it's a picture of different animals, the artist is by Eric Carle. They love it, Jack loved to put it together with me and Ben loved to break it apart. When we finally got it all together Ben and Jack couldn't wait to go through and point to all the animals and tell me or have me tell them what each animal was. So when Dave got home last night Jack couldn't wait to show him the puzzle, he was literally yelling for 30 to 40 minutes, he was so excited.

November 14, 2010

Tonight Dave and I snuck out of the hospital to Ruby River. We have had to pay for a lot lately, and in the near future, things like: a full time nanny, Ben and Jacks 2nd birthday, the holidays are coming up, a lung transplant...etc. So I thought it was really sweet and I appreciated him taking me out to eat. We've desperately needed some 'one on one' time together. It was nice to feel some romance again even if I had four liters of oxygen and a medicine bag, which I call my " ball and chain ". We sat right next to each other on one side of the booth. He told me I was beautiful and told me he loves me so much. I loved it.
I think the adversary trys to make you feel like your not good enough. Especially when your body is so sick and vulnerable.
I was reading Paul Cardalls book and what stood out to me was the part where he had to sleep with three or four pillows sitting up just to feel comfortable. I thought of my brother James and his last stay in the hospital and how he had to stand in his room holding the bi pap to his face all day and all night just to feel comforable. But I don't think he ever got comfortable after that. Ive wondered if it is to soon to go through with the transplant because i saw how much misery james went through, but then the thought popped into my mind that James does not want me to suffer Like he did. He is so selfless and is still playing the role of my big brother.

November 12, 2010

I can't help but think if this transplant works for me why James didn't have another chance at life? Why wasn't his heart and body not strong enough to go through transplant? But then again, I do think that James time to leave this earth was meant to be Because James had so many times he was suppose to die and didn't. He really already had so many chances at life. I will wonder why he wasn't meant to be here on earth with his family and I was? If my family needs me here as much as I need them and if it is Gods will, then I will be so privileged.
I wonder if my boys Ben and Jack are aware of my illness. They pull on my oxygen cord sometimes and they will suck on it occationally. Dave will be giving me a CPT treatment and Jack will come up from behind and start pounding on my back like daddy. When Ben was around eight months old he was quite defensive when it came time for a CPT treatment, he was quick to try to stop daddys hand from, what it looked like to him, beating me. So sweet!
We call my oxygen e-tank "steel gumby".
"When something is broken it means it can't work by itself". We need others to help us when we are broken, especially the Lord.
"You can still enjoy life, even though you are dying". Paul cardall

March 4, 2010

Today I am getting admitted into the hospital. I can't believe I am already back. I was just here from jan. 21- feb. 8. My baby Jack is walking already and Ben is catching up he'll stand then walk a couple steps then drop to his knees. I think he could if he really wanted to. Dave is going to New Zealand tomorrow for a week. I am so sad I won't be able to talk to him for that long. Our kids are going to be watched by our loved ones. I just hate that they have to be passed around like some little orphans.

Day after the Hospital

February 16, 2011

Today it was official. Julie came home yesterday with a sore throat. Today she is sick. How ironic, just a day out of the hospital and she has a cold from someone up there. We spent the last week and a half avoiding her because we were sick here at home. Go figure. I asked her if it depressed her, 'No, it just sucks you know?' She goes through a lot. She takes it in stride and handles it with such poise. I am so impressed with her.

Jack and Ben seem to be doing fine through all of this. Jack has started to say 'bye dad' everytime I walk out the door, regardless of weather or not he and Ben are coming with me. Ben is about where Jack was 6 weeks ago; he knows when I'm leaving, but he's not sure he's okay with it. He will cry a little bit, but usually stops pretty quickly. When I come home, Jack is almost always sitting on his toy box looking out our bay window. If you ever drive by our house, look for him, he's almost always there. I will pull into the driveway and wave at him and he will slowly wave at me. Just today when I walked in he said 'Hi dad!' he kept saying it a few times for the first few minutes. They are good boys, and have perservered through a lot of change just like their mother. They just seem to handle it. I am so proud of them.

Sunday, February 6, 2011

Listed

About two weeks ago, Julie and I met with the transplant team up at the University of Utah hospital. After some final paper work and some deliberation on mitigating their risk, (worst case scenarios), we went home with the anticipation of being officially listed. They were very clear with us to make sure we always carry our cell phones as these are the primary contact numbers they would be calling. The order on the list is determined by your lung allocation number (LAN). That night both Julie and I missed the call from the U transplant team. When we called them right back they had to reiterate how important it was for us to have our phones on us at all times. They told her that her score was 41 (out of 100) and that it is relatively high. She apparently jumped a few on the list and they told her we should have some offers soon. There are only 7-8 currently in our center which services the whole intermountain region for lung transplants.

So its official. Julie has signed away her destiny to the transplant team. We feel good. We are excited and nervous. It is still surreal and probably will be until we get at least the first call. Apparently, lung transplants are known to have some false starts. In some instances, you may get the call, go up to the hospital, get prepped, and basically get ready to go under the knife and the surgery may get called off. Sometimes they don't know everything about the organ until it is out. All of this information about transplant itself would have really stressed Julie out at one point. However, after having some rapid declination in her health and having very sensitive lung function over the past year, I think the uncertainty is outweighed by the huge possibility. There is always worry, but the possible outcome may be so much greater.

This is the first real possibility of a 'healthy' life for Julie, and for that I am grateful. I look forward to seeing her progress through recovery and watching her live life to the fullest much like her father. We are carrying on in life as if things are normal. We are battling the disease with treatments, I'm working for Fisher and Paykel Healthcare, and we are slowly finishing our basement. It is nice to work on choosing finishes with Julie. It gives us a sense of normalcy and hope for the future. She enjoys choosing things for our house to make it look nice and feel welcoming. It is something to take her mind off the inevitable D-day.

I fully expect to come out of this experience as a couple. The Lord has been by our sides the whole way. Julie has such a clear understanding of the world, values, and people. She really has perspective on what is important. I am grateful for that. I think this experience inevitably forces her to think about her basic beliefs and values and motivates her to practice them. For as unstable of an experience this is, she is constant. She never deviates from what she believes.

Last Tuesday Feb. 1, she was admitted. From about the Friday before and on, she would get winded. She looks good, her color is normal, and her weight is up to 108. She just gets tired easily. One day two weeks ago she was lethargic before I left for work in the morning. I asked her if she wanted a blessing and she accepted. I gave her a blessing that she would receive strength and that her lungs would relax so she could take deeper breaths. To my and her surprise, she was able to get a lot out that day. She said she was able to relax and do PEP therapy, CPT, and Hypertonic Saline. The priesthood does something to clear your mind. I really believe that the Lord helps us in a tangible way through the tools that we have, and also in intangible ways. It is so difficult to get her to relax when she is having a hard time breathing. She gets anxious, and worries about her life; can you blame her? With the priesthood, I can try to help in a way that CPT or other therapies do not.