"Childrens Miracle Network" telethon for Primary Childrens Hospital and a quick Kaidence update.

Yes, it is that time of year again. It is time for the annual "Children's Miracle Network". We have been excited to be a part of this for the last couple of years and hope that its success may bless the lives of others.

Kaidence's shorter video of her "Miracle Story" will supposedly be viewed as one of the opening stories for the telethon as part of the national broadcast and also throughout the telethon. So look for her. I have also been told that John Schneider and other celebrities talk about Kaidence’s story! It should be fun and intersting to see.

But most importantly, this is a great time to contribute to the only children's hospital in our area. Primary Children's Medical Center truly is a gem in the community. We are so blessed to have such an amazing place to care for our sick children. This hospital is in our community caring for our children, grandchildren, niece's , nephews, neighbors as well as some adult patients that received specialized care from the hospital as children.From the half of year that we spent living in the hospital and the time that we spend there now for appointments, we have seen how our wonderful community plays such an important role in the success of the hospital as well as bringing smiles to the children's faces. I hope that you will take the time to give a little contribution if possible. Mike and I don't have much to give but we will give what we can and if others do the same it will go a long way and bless the lives of others. For those that want to donate in honor of a child that has been touched in some way by this amazing childrens hospital, you can do that as well.

I copied this info from Paul's blog (hope it is ok Paul). But he had all the info already.

Miracles happen every day at Primary Children's Medical Center and once a year the Utah community and KSL Channel 5 come together to celebrate those miracles during the KSL/Primary Children's Miracle Network Telethon.

The 27th annual Primary Children's Telethon begins Saturday, May 30 at 6:30 p.m. and continues through Sunday, May 31 at 5:00 p.m. on KSL Channel 5.

Primary Children's is the only full-service pediatric hospital in the Intermountain West equipped to care for the total child. The hospital provides specialized care to each child, regardless of ability to pay.

Last year, Primary Children's expended more than $13.4 million to cover more than 11,337 charity-care patient visits.Contributions can be made during the Telethon or by mail to Primary Children's Medical Center, P.O. Box 58249, Salt Lake City, UT, 84158, or online at www.primarychildrens.org.

KAIDENCE UPDATE: Well, Kaidence is once again sporting more fevers. What is it about this time of year? She has been up for the last couple of nights with low grade fevers. She acts ok during the day (no vomiting or anything). She will go outside and run around but these fevers seem to flare up at night. Last night she set an all time record for the highest fever that she has ever had 105 degrees. She had jumped from 102.7 to 104.4 in about 5 minutes and then within a couple more minutes hit 105. I was trying to get ready to take her in to the ER when the cool wash clothes and Tylenol started kicking in. I was so relieved and honestly surprised that this was actually working because it usually does not. I just kept praying that she would not start to go into seizures before I could get her temp down, she was just so shaky. We have blood test (cultures) pending and other than that we have no clue what is going on (chest x-rays look good). Also we keep losing weight. OK, not WE (i have the opposite problem) but I think you all knew what I meant. Kaidence is back down around 23 lbs 8 oz from the 25 lbs 2 oz. She is still getting the same amount of calories but for some reason is losing the weight instead of gaining it.

Anyhow, that is it for us. Please remember the telethon this weekend and thanks for all of your love, prayers and concern.

KAIDENCE HAS DONE GREAT!

I have been meaning to update but my Internet on my laptop was not working and I just barely got Mike to look at it. Anyhow, Kaidence has been doing very well. In fact I think that she has handled this pneumonia just GREAT! I have been shocked, but trust my when I say that Cardiology has seemed even more shocked. I managed to keep Kaidence home the night with the 103.8 temp. I had her sleep in her diaper only with a blanket over her and then I put her on continuous G-tube feeds. I used some really cold cans of pediasure and then packed her feeding pump bags with ice packs so that it stayed cold all night. I really think that have the cold liquids running did the trick with keeping her fevers under 101 degrees. It seemed to work better then doing sponge baths (she hates those). Mike and I also took turns waking up every 1.5 hours to check her temp, just in case. Anyhow, that night was Kaidence's first dose of antibiotics and she has not had a fever since. In fact, starting the next morning she has wanted to be outside riding her bike. Cardiology called the next morning worried and I let them know that she was fever free and wanting to play. They seemed to feel much better about keeping her out of the hospital and off IV antibiotics at that point, but I am not sure they believed me 100%. They called the next day as well to check again (I think that they were all expecting her to be very sick). I had to give them the same news again, but they asked that I take her in that day to see her pediatrician and check her 02 sats. With her little mask on that she wears to the doctors office she was satting at 98 (AWESOME for a healthy person). We will go in tomorrow for follow up labs to see if her CRP has come down and to do another chest x-ray. I think that things will look much better. Kaidence has had more of a cough today than she has in days, but I think that is maybe because her lungs are finally cleaning themselves out and she can move all of that junk up and out. I am so grateful that this turned out how it did. We were surprised and quit frankly I initially thought that we were going to end up back in the PICU. Fortunately we have been able to stay home and life goes on.

ANOTHER FIRST FOR KAIDENCE...PNEUMONIA!

So I have been meaning to post for awhile but obviously that has never happened. Everything here has been going pretty well up until the last couple of days. We have been busy removing the HUGE pine trees on the side of our house. I am sure that many of you that drive by our house have noticed that they are missing. We figured that we had better do it before mother nature did it for us. This way we got to pick were the trees landed. We found a wonderful tree guy to help us get the job done. He was so kind and helpful. I would recommend him strongly to any of you needing tree removal. Call me and I will get you the info. He did a wonderful Job.

Today I went and spoke at an Organ Donation class up at McKayDee Hospital for 'Donate Life month'. I was able to share Kaidence's story and many of the feelings that we have towards our donor family. I am always hoping that somehow we can make a difference in the lives of those needing transplants. After the class today a women came up to me and told me that she had just made all the arrangements needed to donate her body to science after she passes away. She said that after today, she is now going home to undo these arrangements and become and Organ Donor instead. She said that she never realized the desperate need for Organ Donation.

Now to little Miss K. She is a tricky little thing you know. She spiked a fever Sunday morning of 102.8 and threw up. I gave her some Tylenol an she was fine the rest of the day. She then spent The remainder of Sunday, Monday and Tuesday Morning as happy and healthy as could be. Then suddenly (seriously within 10-15 minutes) she went lethargic and spiked another temp of about 103 degrees. So I bagged her myself so that I could send in a urine sample assuming that we had another UTI. She saw the doctor and we decided to wait and see what the sample showed. The fever continued today so after speaking in Ogden her Pediatrician decided to have a chest x-ray and blood labs (Blood cultures included, of course). Did I tell you that I have the most amazing pediatrician who spent her day off arranging everything for me today? Anyhow, Kaidence's chest x-ray showed that she has bacterial Pneumonia......BUMMER! I also called and gave the blood test results to cardiology and they were not happy at all about her white count and HIGH CRP (body's inflammatory response to infection). They said the numbers are much too high for her. After seeing the numbers they will most likely be admitting her to the hospital. They wanted to do it tonight but I am hoping that we can hold her out until tomorrow so that we don't have to go through the ER. Tonight 45 minutes after getting Tylenol (Kaidence can't have Ibuprofen) her temp reached 103.8 degrees within about 5 minute time frame. We have given many sponge baths tonight and it seems that it is lowering and she is now sleeping comfortably. Cardiology is meeting tomorrow morning to see if they will be admitting her tomorrow. They said that they are worried because Kaidence is good at pretending to be doing OK and then she suddenly crashes very quickly. Yep, they know Kaidence well by now. If her fever gets above 102 again tonight we will have to bring her in.

Other than that Kaidence has been doing GREAT! She is so much fun and getting very independent (or so she thinks). Oh and she also does stairs now and has a new found love of candy.

McCaden is playing machine pitch baseball and seems to really like it. He was hit into home base the other night and so excited. Mcaden is a sweetheart. The other day he took his very own money to school to put toward his lunch money account. He came home and asked me to look at his account and see if I noticed anything different. He had paid $5.00. He said "I just wanted to help out you and dad a little". What a good boy!

Camden still continues to be my sweet cuddle bug (most of the time). Today as I was getting ready to go and give my talk he took the dress that I had layed out to wear and he hid it so that I couldn't find it. He said that he doesn't like that dress. Oh well, can't please everyone I suppose.

Stay tuned, I am sure there will be more to come!

ANOTHER CONFERENCE WEEKEND AT AN IHC FACILITY......doing conference "Stephenson Style!"

The past 3 -4 years we have started a conference tradition. It all started with my grandma (who Kaidence is named after). Years ago we noticed that whenever conference rolled around we were watching it from the surgery waiting room at LDS hospital. We did that twice with my grandma. We have also done that With Kaidence. She was admitted back into the PICU at PCMC for her long stay in between Saturday morning sessions of conference in October 2007. We have also spent a couple of conferences up there as well since being transplanted.

Spring Conference = LDS Hospital
Fall Conference = Primary Children's.

Last night was no different. Maybe the Lord thinks that we listen better when we are in a medical facility, I don't know. We spent yesterday at LDS hospital as Mike became ill and had his appendix removed. We were blessed that it did not rupture with how bad it was and how long he had been ill. We saw the Lord bless us once again not only with his appendix but on the way to the hospital we were in an intersection turning left up onto Victory Road (at the arrow) when someone raced around all the stopped cars and ran a red light on Beck Street going insanely fast. I am not sure if they were running from someone. I will just say that it should have involved three cars and with how fast the guy was going I am not sure that anyone in our car or the others would have survived. We would have been broadsided between a car and an SUV. It was a very close call, the closest I have ever had. And for Mike with an appendix ready to burst being in a accident like that would have been disastrous. They wouldn't even let him walk around to go to the bathroom because they were afraid it was going to burst before it could be removed. I am so grateful for the prayers that were offered before we left for the hospital and for the neighbors that left Priesthood last night to come and give Mike a Priesthood blessing before going to the hospital. Thank You!

So I guess this means the I will likely have 2 tickets to give away for tomorrows concert for Paul. What a bummer, I was looking forward to it but that is not the purpose for the concert and so I am happy that we were still able to contribute to Paul's Heart Fund. The concert is sold out. I have 7 other family members going tomorrow but like I said I don't think that we will be able to make it so please let me know if you want 2 tickets. Let me know how the concert is and have fun.

PLEAE SUPPORT OUR FRIEND WHO IS WAITING FOR A NEW HEART!!! A BENEFIT CONCERT FOR PAUL!

(OK so I wrote the first part of this blog a LONG time ago and never finished to post, sorry)

We know Paul through his blog and were able to also meet him and his wife in Cardiology. He and his wife are both such kind and genuine people. He is waiting for a new heart and has been waiting for a LONG TIME. Paul and Kaidence share the same doctors (Transplant team) at PCMC. Paul's friends are doing a benefit concert for him and his family. The concert "Living For Eden" (Eden is his cute little girl) will be April 6th 2009. It is a great cause and I must say that the show you would be getting will be pretty darn good as well. As I know by now, a Heart Transplant is not cheap. Neither is the wait for a heart or the time after the heart comes. Medical bills become a constant part of your budget, prescription cost, procedures and everything else. Let's all come together to help Paul get ready for his New Heart! If you are interested in getting tickets or donating to this great cause,

please follow this link http://www.livingforeden.com/

I just bought all my families tickets......PLEASE COME and help out a GREAT family! Can't wait to see ya'll there!

Also, April is "DONATE LIFE" month. We will be speaking at a ceremony at the end of April and attending another ceremony next week. We feel honored to have been asked to be part of this. Everyday I think of our Donor Family and they in a way have become part of our family, although we have only talked through a couple of letters. I am sure that they have no idea how much we think of them, but a day has never gone by in our home that they have not been in our prayers. Everytime my little kiddos get balloons they send one up to Heaven for Grandma and one to the little boy who gave his heart to Kaidence. We will forever be grateful. Thank You to all those that make Organ Donation possible.

Call 911!

This evening I had another one of those experiences that leaves you with a big pit in your stomach. The boys and I needed to go to the store to get some supplies for a school project for M (yes, I was feeling ambitious today). We did our shopping with Kaidence in the stroller like always. Now Kaidence has been sick with a runny nose, cough and last Saturday night her ear drum burst. So this whole week, before I can feed her or give her medications I have to get her up and pound on her back for a while to move along the mucous. If I don't she ends up gagging and throwing up. She has never been able to tolerate thick secretions since her long stay in the PICU of being intubated. I heard Kaidence doing the cough she does just before vomiting so I turned and took her out of her stroller to pound on her back knowing that it will keep her from puking. As I picked her up, Kaidence completely stopped breathing and her whole face was turning blue VERY fast. I did the Heimlich but then felt that I just needed to lay her over my knee and do back blows ( I remembered the video I watched in high school when I became a First Responder). I was doing this as I ran down the aisle yelling for help. A lady next to me could see how Kaidence was blue, gray and her eyes had the scariest look in them and she started yelling through Dicks Market to call 911. By this time I was surrounded by people shouting to see if anyone was a doctor and I was trying to yell over eveyrone and tell the guy on the phone with 911 to tell them that she has had a heart transplant and that she was 2 years old. This whole time C is shinning a flashlight in my eyes asking me if we can buy it and them a minute later he brings me some candy and asks me again if I will but it for him. Needless to say he was ignored!!!

Someone finally took the boys from me, Kaidence was looking so much worse and still not breathing. I kept praying to myself but was thinking,

Why isn't she breathing??

'she is going to die, she is dying.'

'Where is the ambulance??????'

I kept doing the back blows while thinking 'we have come this far and this is how it is ending?'

At last Kaidence started to cry and so I knew that I had finally cleared whatever was blocking her airway. We told the 911 operator that Kaidence was breathing again and they stayed on the line for a minute and I told them that I thought that she would be ok. But Kaidence's color was not coming back quickly and about 3-5 minutes after she started breathing again she still looked very blue, so the store manager called 911 again. After being on the phone with the operator for a few minutes the second time, Kaidence pinked up and wanted a balloon to play with. I told the operator that she was looking much better and that I was driving her right over to her pediatrician's office just down the street (they have a night clinic and they are connected to the hospital as well if that was needed) . We got the boys in the car and said a prayer of thanks and drove to the doctors. Kaidence was looking so much better by now but her O2 was still a little low but after some time came back up to her normal. The doctor seems to think that it is all related to Kaidence's cold. We are taking her in on Friday to have chest x-rays done to see if she aspirated anything into her lungs that would cause pneumonia.

A couple of years ago my M choked on a lego. I went to do the Heimlich but I froze and drug him into the garage where Mike was instead. After Mike did a couple of thrust the Lego came up, but when M choked he never turned colors. Since that experience I have always thought about what I would do if it ever happened again, because I was so angry with myself knowing that I froze and that by the time you call 911, a lot of damage can already be done from going without O2 for too long. It only takes a couple of minutes.

I am so grateful that Heavenly Father helped me, to help Kaidence tonight. I am grateful that my mind was clear. It was one of those times that I knew every second counted and that I didn't have time to waist. I have seen a lot of crazy stuff in the PICU but have never seen a child that color of deep blue gray and you could only watch it getting worse with every second (literally). After things settled down at the store the lady that saw me first with Kaidence told me that she couldn't see her face because I had her over my knee facing the ground but she could see how blue she was through her head of hair. That nasty grey blue color was a 100 times worse then when Kaidence was in heart failure. Tonight I go to bed counting my blessings and thinking that maybe I'll keep Kaidence's G-Tube forever....It's safer that way.

So what was the big project that warranted taking all the kiddos to the store???? Here it is.

SAYING GOODBYE

What do you say when you know that a family is getting ready to say goodbyes to their little girl?
I remember asking Mike while in the hospital with Kaidence "Do you think that Kaidence will be ok?" Now I know that many of you have heard this before, but I was really hoping to hear a definite 'yes' from my husband. What he said to me at first made me angry for about a minute and then in that moment my whole way of thinking was changed forever. He said to me "No matter what happens, SHE will be ok. It is whether or not we will be." Like I said, I thought about what he said, day after day, after day. It was true, no matter what happened, Kaidence would be happy, loved and cared for. She would be more than ok. I also understood that it would possibly be better for her as well, because the suffering would be no more.

I have been following Gracie's blog since before her birth. Today as they say goodbye, they will be giving other children HOPE as they have chosen to donate some of Gracie's Organs, what an amazing thing to do. My heart breaks for the Gledhill family. I pray that today Gracie may be held and loved by her family until it is her time to return to the arms of her Loving Father in Heaven. I pray that the Lord will continue to hold this family up and give them the faith and strength to make it through this loss. May Gracie's brothers and sister feel the love that Heavenly Father has for ALL of his children. May they all be blessed this day with "the Faith of a Child," pure, perfect and simple. My thoughts and prayers are with this family today as they say goodbye for a brief moment in time. May they feel the love of Gracie and our Heavenly Father this day! Gracie YOUR family is FOREVER!