DAMAGE DONE TO KAIDENCE'S HEART!

Tonight has been very frustrating. We had Kaidence's echo done. During the echo we found that some damage was done to her new heart during the cath lab today. They figure what happened was that when they took the prong like snippers to grab a biopsy of the heart it clipped the part of her valve that makes it open and close. They said it is very rare to have something like this happen (should that make me feel better?) and that the doctor had never had it happen before.It is causing her valve not to open and close like it should and so the blood doesn't go where it should as well. Kaidence could live with this regurgitation if it does not get worse but it could put added stress on the heart and shorten its life. If things get worse they will have to go in and do another open heart surgery to repair the valve. Our problem is that she has already had two open heart surgeries and the more times you open the sternum the higher death rate you have. We wanted to not have to open it until Kaidence needed a new heart. I am not going to lie. Tonight I feel very frustrated. With all of Kaidence's other problems in the past I handled them well but tonight I am frustrated. I keep playing the famous "what if game." I know that Kaidence's Cardiologist is not very happy about the whole thing. The doctor that did the procedure came in and apologized for possibly causing a problem that may compromise Kaidence's heart. Kaidence just finished fighting 4 IV pokes and is exhausted. I am going to go and love and cuddle my little girl. Please pray for her once again. I am hoping that we can have more answers in the morning and that things are better and not worse. Just another bump in the road. I know that the Lord still has a plan for Kaidence.

GREAT CATH LAB!

Today has been a surprisingly nice day for Kaidence at the hospital. We got to the hospital today at 6 am and they took her into the cath lab around 7:45am. Cath lab took about 3.5 hours. During her procedure we went to visit our PICU friends. It was weird to see Kaidence's name back on the white board. Kaidence did great. Her numbers all looked great as well. They check different pressures in her heart and lungs in the cath lab. They also shoot dye through her heart and watch how her heart and all the vessels handls it. Because she is a transplant she is at a higher risk of artery disease, but all of that looked good. Everything looked AWESOME today. Her heart is happy and working well. We are hoping that the heart biopsy will look as good. That will be back tonight sometime. Also, when they looked closer at Kaidence's LPA it looked fine and so they never had to stint or balloon it (amazing). Which means that she was transferred to the floor and not the PICU. It is wonderful that we didn't have to do any intervention with the LPA, because it would be one more thing to maintain and would have to be redone often to keep up with her growing body and heart. We are getting an echo this afternoon as well. Also, Kaidence may be back down to once/week appointments. YEAH!!!!! I am so excited not to have to come to cardiology twice a week. I have one more whole day now to conquer the world. They will continue to watch miss K tonight for bleeding and any other problems. Kaidence has had a nasty cough for about 10 days now. They noticed that her upper right lung is a little collapsed. Usually it is her left lung giving us problems. She has needed a little oxygen help at times but they aren't sure if that is do to being intubated again during surgery or her being sick. We will wait and see.
The plan is to come home tomorrow. That will be good. McCaden told my mom today that he doesn't like it when we go to the hospital . He said it makes his tummy hurt. What cute little guys we have. Thank you for all of your love!

CATH LAB TOMORROW!!!

Sorry that I haven't posted, but my laptop died. Anyhow, tomorrow morning Kaidence goes in for her Cath Lab. They will do a heart Biopsy and also place a stint or balloon in her LPA (left pulmonary artery). We should have biopsy results back that night. We will then spend the night in the PICU and she will get some IV medications that are taking the place of some of the other medications that we had to take her off because of her low ANC. Hopefully it will be a fast PICU trip. Anyhow, we will have family staying at our house with the boys. I have told them that sissy will have to stay at the hospital and they started to get a very concerned look on their faces. I think they feel better after explaining things but they still have a lot of questions. We hope that all is well with everyone and we will keep you posted about tomorrow. Thanks for all of your prayers.

PLEASE CONSIDER ORGAN DONATION!

I have often wondered about "what I am going to do to help make a difference?" One thing that I feel so strong about is Organ Donation. I don't think that any one realizes how many children(adults) would have a fair chance at life if people would just be willing to donate. Please consider registering to be a donor. I have seen too many little ones pass away lately when a heart was all that they needed. It is so sad and senseless. Other organs are desperately needed as well. There are some medical deaths that cannot be avoided but when it comes to those that need organs donated, YOU CAN save their lives. I hope that you never have anything come upon you to where you are the donor and I also hope that you are never the one needing the organ. The thing is that none of us know what our futures hold. All I am asking is please educate yourself now and consider giving this precious gift of life. I have placed links on my page to help educate you and also so that you can register as a donor if you choose. Thank You to those that have already chosen to do so. In the future Kaidence will likely need another transplant. Kaidence would not be here if it weren't for the wonderful family that chose to give her a second chance at life, please be willing to do the same.

HAPPY CONFERENCE -GRACIE MADE IT THROUGH THE NIGHT!

Gracie's parents have not posted yet, but Gracie's Aunt and Grandma have. GRACIE MADE IT THROUGH THE NIGHT!!!!!!!! This is huge, considering she couldn't even last minutes off ECMO earlier this week.

6 months ago, last conference saturday Kaidence was admitted once again to PCMC. We watched our saturday morning conference from the ER and later from kaidence's PICU bedside. Little did we know at that time that Kaidence would be so close to dying within a week and that we would face that fear for weeks at a time, multiple times. We also never thought that it would take an experimental heart pump and then a transplant to get her home again. Kaidence didn't get to go home until 1/10/2008, but she did come home, That conference touched my heart as it seemed the speakers and the spirit spoke directly to me. As though it was preparing me for the trials that I never thought would lie ahead for my Kaidence, my family and our ward family. I did not know then what was about to happen to our life's. I pray that your hearts may be touched like mine was and give you the strength and faith that you will need in the days and years to come.

With Hope, Faith and Love,
Shauntelle

OUR FRIEND CARSON RETURNED HOME TO HIS HEAVENLY FATHER!

Anchorage resident Carson Wallace Henrie, 2, died March 30, 2008, at his home surrounded by family.A memorial service will be at 6 p.m. Thursday at the Church of Jesus Christ of Latter-day Saints Strawberry Chapel, 3250 Strawberry Road. A slide show will be afterward.Carson was born March 3, 2006, in Anchorage to Dr. Clinton C. and Heidi (McAllister) Henrie. He has an older sister, Hanna, 4, and a younger brother, Jaxon, 3 weeks. At 16 months, Carson was diagnosed with a brain tumor and flown to Primary Children's Medical Center. As he fought through the treatments, he touched the lives of all who knew him. Carson displayed amazing courage and had an enormous will to live.His family writes: "Carson taught us what is truly important in life and to appreciate the little things. By example, he taught us about patience, endurance, faith and love. He taught us to smile when life is hard and to fight back even harder. He taught us to have hope, don't give up and to continue believing in miracles. We've learned the preciousness of every second we have with our children. Though we will miss Carson terribly, we will be forever grateful we had the chance to know and love him. Carson has changed our lives and will remain in out hearts forever."In lieu of flowers, donations may be made to a cancer fund in Carson's name. Donations may also be made to the Carson Henrie Medical Donation fund at Wells Fargo Bank. Funds will be given to a family in need in a similar situation. The family wishes to thank all the wonderful nurses, doctors, family members and friends who cared for and loved Carson.Carson is also survived by his grandparents, Bob and Gloria Dickinson, Dave and Linda McCallister, and Sherril Henrie; and numerous aunts, uncles and cousins.He was preceded in death by his beloved grandfather, Wallace Keith Henrie.Carson will be laid to rest at Panguitch Cemetery in Panguitch, Utah.Local arrangements are with Witzleben Legacy Funeral Home & Crematory.Published in the Anchorage Daily News on 4/2/2008.



-We are so grateful for the opportunity that we had to be roommates and friends with Carson and his family. Carson and his family were the first friends we met at the hospital back in July. Little did we know that both Kiddos would be there for such a long time. He had my heart from the very beginning. He loved his little teddy bear, I remember one night when I was there with Kaidence, going over and tucking him in during the middle of the night and tucking his little teddy bear under his arm. I hoped his mom wouldn't mind. Heidi and family, thank you for your love and support with Kaidence. I am grateful for your friendship and example of faith. Whenever I would tire, I looked to you and little Carson. Carson was so faithful and he knew his Heavenly Fathers plan for him. We love you Carson, We will all miss you, especially little Kaidence!


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LIFE TODAY!

This picture of Kaidnece and Kirby made me laugh. I walked in and Kirby had layed next to Kaidnece and fallen asleep. We had Cardiology today. Kaidence's WBC was down slightly but still high. The Cardiologist talked with the hemo. doctor about her blood and he felt that things may still be high from the shots and her cold that she has. Her blood cultures all came back negative so that is great news. He doesn't seemed worried at this point, so I won't either. We need Kaidence to get over the cold that she has so that we can continue with the procedure and heart biopsy that is being done next week. It has already been cancelled once from her having a low ANC I just want to get it over with. They will fix her left pulmonary artery (LPA) that has been crushed and also take biopsy pieces of her heart and check for an signs of rejection. We hope that everything will look good. Kaidence had her first physical therapy with Early Intervention on Tuesday. Hopefully we can work on a couple of things and she will just take off. She did very well, not to pleased about the whole thing though. One problem she has is feeling confident. Because she was such a sick baby (and hooked to a heart pump) Kaidence never got the normal "throw your baby in the air and spin them around" fun. Because of this she gets very nervous and feels insecure if she feels a little unsteady or too free. Her appetite is still not that great. However, she does love to chew on pickles. Hopefully things will pick up when she starts feeling better.

Camden has been sick as well and I think that this is where Kaidence's all stemmed from. Yikes, I might have to keep everyone home from school and church to keep them from always getting sick. We really don't go anywhere else and so I think those two places are the GDC (Germ Distribution Centers.) OK, I guess we had better keep sending them (when healthy, which hasn't seemed often lately). He has had a very mucous like cough, vomiting and ear drainage. Hasn't been the happiest thing either, but I can't say that I blame him.

McCaden is doing well. He was listening to his primary cd's the other night at bed time and about an hour later came out of his room crying. I asked what was wrong and he said "I just love Heavenly Father and Jesus so much. They are so good to everyone." I am glad that my little 6 year old can have those moments that will touch his heart and prepare him to gain his own testimony. Also, he has decided that he wants to live with us forever. I told him that I would love that. I told him that maybe he should live really close to us when he has a family. Sorry Ostler's, but McCaden decided that he is buying your house when he gets big and digging a secret tunnel with a punch code combination over to my house. He discusses the plans with me every night.

Mike and I are doing well. Mike has been very busy with work and school and I have been doing the same old, playing nurse and mommy to my kiddos that I love!

Please keep praying for Gracie!