Happy Halloween

Happy Halloween to everyone.  We have had a quiet one here.  We did go out to the Science Center this afternoon.  It was neat but we agreed we both liked the zoo better.

Our favorite part was the experiment lab.  They had us put on lab coats, goggles, and gloves and there are several stations where you can do different experiments. I told Kyle he looked like the characters off of CSI.

We stayed about 3 1/2 hours and by that time Kyle was pretty tired and wore out.  It kind of scared me that he got so tired so easily.  We came back to the apartment to rest and went over to the House tonight to see what the party was like.  We had a little to eat and returned back to the apartment.  I was happy to hear from the mother of the 3 year old who has been in the hospital for 3 months on the ventilator waiting for a heart got his on Sunday and is doing well. 

I have also posted a picture of Kyle's bed here.  They usually try to decorate the rooms for the sex of child who will be living there but they were out of boy stuff.  Luckily Diana Akers from Bedford made Kyle a Bulldog blanket and had the kids at school sign it and sent it out to us the day before we moved in.  So we put it on Kyle's bed.  Thank you Diana and all the kids at Bed ford School.  It is really special to Kyle.

We hope everyone has a good Halloween.

  

Getting in the Halloween Spirit

Kyle and I decided to cheer ourselves up and get in the mood for Halloween by carving a pumpkin.  Kyle made it the Iowa Hawkeye emblem.  Iowa is his favorite college football team.

I thought he did a pretty good job since he free-handed it and the cutting tool broke when he was cutting out the lettering.  we had to finish using a kitchen knife.  
In other news today we got some mail.  Thanks Barb for the package.  We went and got my hair cut, something I was dreading out here because I only like the way Sherry cuts it back home.  I talked to her the other day and she reminded me that "it is only hair and it will grow back."

The lady cut it a little short but I think I can survive.  Hopefully we will be home before it needs it again.  My fear is that this will drag on for a lot longer.  I so badly want to go home and have our family back together again.  

I hope everyone has a Happy Halloween with your little ones.  I am trying to talk Kyle into going to the party they are having over at the House.  They are having "Trick or Treat" from the volunteers trucks in the parking lot.  Sounds funny but kind of cool!  Will let you know if I get him to go.

All Is Quiet

Nothing much to update about.  We have been here three weeks now and Kyle has been on the transplant list officially for 3 weeks tomorrow.  We are getting used to our apartment.  I have already done some cleaning.  Kyle has been sleeping in the mornings.  He sleeps about 10-11 hours a night and seems to sleep the best in the morning so I hate to wake him. He has been having bacon and eggs, his favorite, every morning and then doesn't feel like lunch but has been eating a good supper.

Today he worked a lot on math homework.  Thank goodness he didn't need much help, math is not my best subject and Jessica usually helps him at home when he has trouble.  He also has been reading some.  He found a new series of books he is reading called Ranger's Apprentice and is reading book one.  I have always loved it when Jessica and Kyle find a good book, especially if it is a series that they like.

I found some time to read also. I recently read Sick Girl by Amy Silverstein.  It was about the author who at age 24 had a heart transplant and she discusses the challenges she faced.  It tells about the negative things and is pretty depressing.  I kept reading though.  I guess I want to know all about how things will be for Kyle, the bad as well as the good.  

I have done a little scrapbooking but it is hard with out my stash from home to dig into. Kenton has brought a few things out for me but we already feel like he is going need to bring the trailer behind the truck to move as back home when this is all over with!

Jessica has been sick  the last two days with the stomach flu.  It has been frustrating for me that I am not there for her.  I feel like I have had to choose between my two children. Kenton is taking good care of her and things back home though and hopefully she will be able to go back to school tomorrow.

Well, that is all for now.  We are trying to patiently wait for the phone call or the pager to go off.

Moved and Settled In

Today has been busy.  Kenton and his mom arrived yesterday.  We moved out of the hotel today and into the Ronald McDonald apartment.  Although it is not as good as home we feel lucky to be here.  We are getting settled in and Gramma fixed us chicken and dumplings tonight.  That is one of Kyle's favorites.  He ate two big helpings.  

Joshua and Cindy from the hospital back home came to see us this afternoon.  It was good to see and visit with them.  

We went to the doctor yesterday and was told that Kyle's name has come up a couple of times already on the possible organ transplant list.  Apparently when a organ becomes available the computer generates 20-30 possible matches.  Those patient's doctors can then see if the heart is a good match for their patient.  If someone is above you on the list first choice would go to them. Even though we didn't get the call, this was reassuring news.  They say Kyle's turn will come.

We met another little girl and her family who are living here and she has been here since August 2nd waiting for a new heart.  

I also got to talk to a mother on the phone whose son who is 11 had his transplant in January. Their's is an amazing story and I will ask her if I can post a link to their web page. We are hoping to meet and visit some more. 

A lot of people have asked and here is our new address to send mail to:

Kyle Yehle

Marilyn Johnson

4381 West Pine

St. Louis, MO 63108

My sister Chris still called me tonight.  She told about the bake sale that they had at St. Francis today to raise money for Kyle's medical expenses.  I am so grateful and amazed.  Thank you so much to all of you who organized, baked items, worked and donated.  I was really feeling home sick today but knowing we have so many people back home pulling for us and caring for us makes me stronger.  I know I will never be able to repay all of you.  I do plan on taking what we get out of this experience and give back to others.  I don't know how yet but I know God will guide me.   

Getting Excited for Tomorrow and Other Thoughts

Kyle and I are both getting excited for tomorrow.  Kenton and his mother are coming back to see us.  Kyle has asked daily when Kenton would be returning. Kenton and Kyle are very close.  Last night Kyle could not get to sleep and we talked about being back home and farming with Kenton.  Kyle hates missing riding in the combine and watching the corn fill the hopper.  He talked about how great it felt to be outside with the sun shining and the smell in the autumn air.  Kenton laughed at us that the weather is not like that now back in Bedford! 

We miss our cat, Sam and our dog, Ralph.  Kyle wishes he could just hold Sam in his lap like he did at night at home.  

My goal, if nothing else I can do for Kyle, is to make him feel as much at peace as possible.  I don't want him to feel stressed if I can help it.  I want to make his days as happy as possible and I want him to feel above anything else that he is loved and cherished.  

During our week in the hospital out here I seen many sick children.  The night Kyle was in ICU he was one of the few who was not on a ventilator at the time.  Another day I saw a small baby with a trach tube. She lay in her bed alone at the time kicking her legs around.  It also broke my heart to see a small child about 4 or so come out of his room pushing a walker with the physical therapist along his side.  Although you could not see it, I sensed the halos around their heads. They are God's little angels.  It is hard to understand why they have to suffer but I truly believe that they are God's soldiers sent here to remind all of us what is important. Life is not about the great job you can get, the new home or fancy clothes.  It is about the smiles, hugs and laughter. It is about giving of yourself to help another.  It is about making another person feel loved and cared for.  It is about peace.  I have known since Kyle was born that he was my angel.  Anyone who knows him would agree his laughter is contagious.  He is extremely kind and caring.

Thank you again for all of your comments, prayers and support.  Because of all of you, Kyle and our family is remaining strong and looking forward to a future with a new heart.  

I encourage you to tonight hug your child or your loved one a little tighter and tell them you love them and join us in praying for not only for Kyle but all God's little angels, both those here and those already in heaven.   

More Pictures

       This is Kyle wearing "Phil" the defibrillator vest.  You can't tell much from the picture but the back has more metal bars in it as well as the vibration box.  He wears it all the time and has to sleep in it also.  It is not very comfortable.
Kenton and Kyle together.  Kyle misses him so much and can't wait for Kenton to come back.  Kyle wants to be home combining with Kenton.

Kyle at the hospital with his extra large Homer Simpson slippers on.  He got lots of comments about them.  He is sitting with Nell, who comes to visit the kids twice a week.

We went to an appointment with the psychologist today.  Kyle laughingly told his friend on the phone that he now has a "shrink".

Kathy Brand, Cathy New and Billie McCrary came to see us for a short visit as they were out here for work.  It was so good to see them.  I was excited to hear St. Francis won the Missouri Quality Award.  Like I have said before St. Francis is the best.  I want to thank everyone there for their constant support, visits, phone calls and gifts.  They are really great people. I am very fortunate to work there. 

Nothing much planned for tomorrow.  Please keep us in your prayers and as I tell Kyle every night we are another day closer.

Quiet Weekend

We had an uneventful weekend.  Pam Atkin, one of the nurses from the hospital where I work and her friend came by to see us.  She was out here visiting family.  We had a nice visit and she brought a package from work for us.  We went out driving around on Sunday and saw a PetSmart.

Even though we don't have a pet out here to buy for Kyle wanted to go in and look around.  We spent an hour in there looking at the minature hamsters, fish, birds and some cats that they had for adoption.  We had been missing our pets at home but felt like we got our "cat fix" by the time we left.  We also spent about an hour at the book store. That is another place the kids and I like to go when we have time.  We don't even have to buy anything, we just enjoy looking.  

Today we did more laundry again and Kyle worked a lot on home work.  I also made some phone calls that needed to be done and worked on some paper work. We had a message when we got back to the room. Ozzie Smith, retired pro baseball player had called to talk to Kyle and said he would call back.  That was exciting.

Tonight Kyle is planning on watching the Denver Brono's game. That is his favorite team. 

 

I have posted a picture taken last week at the hospital of Kyle and I at the roof top garden.

He is hooked up to his milrinone IV.  The milrinone has definitely improved his color and his extremities are much warmer, a good sign it is improving his circulation. 

Tomorrow we have another appointment with the psychologist.

That's all for now.