My heart breaks for those many families that I have witnessed lose their little ones. It has been sad to get to know these families and then watch them as their children are passing away. These families that have been here for a long time have been our only consistency in this place. You see them day after day and start to be each others Cheer Leaders. Little Luke passed away this evening. The 3rd baby in 1.5 weeks. What a tough little guy he was and I am so sorry for his family. That is what is so hard, you sit aside and watch this and are so helpless. All I can do is say I am sorry. All have had our same belief that Families ARE Together Forever and that brings great peace to all. I am so sorry for Luke's family, please keep them in your prayers.
Saturday, October 20, 2007
I just got to the hospital today. I had some things that I needed to do with the boys this morning. All morning I have been so on edge and have felt very unsettled. I feel so much better as I sit by Kaidence's bedside. I already miss my family. If this is at all possible the PICU feels calm and peaqceful at this moment. I am not sure what it is. It is almost cozy.
Kaidence has been given an IV drip that will keep her paralyzed for now. She has been a little to happy and playful for them today and they are afraid she will wear out her heart if she keeps it up. I am sad that I wasn't here today while she was awake and playing but that is OK. We are still playing the waiting game and we continue to ask you all to keep Kaidence in your prayers and if you don't mind keeping our whole family in your prayers. We would be so grateful.
Posted by Kaidence's Mommy at 1:17 PM
Friday, October 19, 2007
Kaidence is a remarkable little girl. Her echo looked about the same which to us is at least better then worse and her left lung actually has a little air in it today. The cardiologist all think that Kaidence looks very good. They are pleased with her improvement and the fact that she is still holding her own. Their has been talk by those in charge that this weekend or the beginning of the week is a very good possibility to get a new heart. They say that it just seems that things tend to work that way on the weekends. We will have to see what the Lord has in store for her. It does make me anxious. Mike's birthday is on Sunday, maybe he will get a very special gift.
Thank you for the messages that are being left on the blog. I love to read them and they give me peace, hope and I know that we have so many people in this with us. WE love you all!
Posted by Kaidence's Mommy at 3:29 PM
Thursday, October 18, 2007
Last night at 3:30 am Mike was sweet enough to pack up the kids in the snow and come pick me up at the hospital. I was exhausted and decided to leave Kaidence on her own. That's right, I slept in my own bed.
Not much has happened today. I can't decide if that is good or bad. We have been very blessed by others. We received a phone call today from church headquarters. President Monson was asking if we would allow him to come and give Kaidence a blessing. WE of course said that would be wonderful. He has had an emergency come up so he is sending Elder Child and we are so very thankful for their love and concern. She has had many beautiful blessings and we are still praying for a miracle. Thank You to everyone for all of your prayers and support, even those of you that we do not know. Thank You.
Tomorrow Kaidence has an echo scheduled for the morning. We will keep our fingers crossed.
Posted by Kaidence's Mommy at 4:52 PM
Wednesday, October 17, 2007
Well today has been pretty quiet for us. Kaidence had a rough late night last evening. She is getting some bad effects from all of the narcotics that they have her on. Sometime she will just thrash around in her bed. In just a couple of hours she has worn an open sore on her fist from trying to rub and itch her nose. I am starting to come to grip with the thought that Kaidence may be getting a heart from another person. They tell me to keep my fingers crossed, but I can't wish for someone to die just so Kaidence can get their heart. It just seems wrong and I have had a hard time coming to terms with that. I am starting to understand that whoever's heart she does get would be passing away anyhow and I am only hoping that the family will give the gift of donation. This place is pretty sad at times and it is hard to watch as kids pass away here but without fail you can always feel the spirit so strong when it is happening. It is also such a blessing to see all of the many miracles that take place daily as well.
We keep waiting for our pager to sound and hope that when it does we can be ready and be at peace with the choices that we have made for Kaidence. From here on out it is all in the Lord's hands.
Posted by Kaidence's Mommy at 8:11 PM
Tuesday, October 16, 2007
Finally, after 3 months in the making, Kaidence got her first tooth. I haven't thought to check in the last couple days of craziness so I checked late tonight. I knew that I had to call Mike but I also knew that I would wake him up in a panic thinking that this was "the call". At least she tolerated the painful process very well with all of the sedation.
Posted by Kaidence's Mommy at 11:20 PM
This is an email that I received today and I thought that it was fitting for Kaidence.
Miracles only happen to those who believe, to everyone else it's justpure luck or coincedence. Kaidence's name reminds me of the songs the military troops sing when they march to help them keep the marching rythym.
I hope that Kaidence's name will bring her a perfect heart that keeps rythym and doesn't miss a beat. She is a soldier fighting a difficult battle. Hang in there, I'll be here for you if you need me.
Posted by Kaidence's Mommy at 8:54 PM
So just as I hit send to post the last blog the transplant coordinator walked in and asked if we would give permission to list her. I wasn't sure what to say. We have to give Kaidence every chance at life possible so after a moment of shock we said to list her. She has just been listed and they are bringing us our pager, determining the size of heart she can have. They say that she can take up to a 2 year old sized heart, which to a mom who has a boy that just barely turned 3 years old- I once again have mixed emotions. She is highest priority and at the very top of the transplant list. I don't know if I should cry, throw up or be relieved. I just hope that we made the right decision.
Posted by Kaidence's Mommy at 12:22 PM
Well today Kaidence looks better then she did a couple of days ago. Last night despite all the sedation she smiled at me and played with her favorite spoon that her big brother Camden packed for her. She has been awake much more today. They keep her hands restrained so she cant pull at her intibation tubes. They continue the sedation to keep her heart from working to much. She did watch Baby Einstein today. She stares at the ceiling alot I have a feeling that she has had some visitors. We are waiting to hear official word any minute that she has been listed for a heart, but have not received the pager. I am very anxious today. I still feel so strong that the blessing that was given to Kaidence can still come to pass if it truly is the Lords will and what a miracle it would be. I think that is why I am so nervous. I want to get a new heart soon if that is what is meant for her but at the same time I am afraid that things will move too quickly and that she won't have time to get better. Sounds funny I know because if she was meant to have that miracle of her heart returning to normal function I know that the Lord could do that instantaneously. The doctors most likely think that I am a nut job because they know that I am not giving up on her getting better until I have too and they only look at everything from a medical standpoint, but that's ok and it's their job. Either way we will be blessed because Heavenly Father loves us and has his hands in all things. We have been told that we need to be Faithful for blessings to come to pass and we are trying. The Red Sea was not parted while people stood on the shores. They had to get in and get their feet wet for the miracle to come to pass. Our families feet are wet and we are walking. I just have to keep the faith that the Lord won't let me drown.
Posted by Kaidence's Mommy at 11:54 AM
Monday, October 15, 2007
Yesterday, Sunday October 14th, 2007 was a crazy day. I decided that I would take a step and leave the hospital for the night while my mom stayed with Kaidence. My boys needed me and I needed them. I have been trying since August to bear my testimony in our ward and I felt that I needed to do this before things with Kaidence got better. It is sometimes easier to say that you know that Father in Heaven loves you and that he has his hands in all things and talk about beautiful miracles when everything in your life is happy and peachy. I felt that I needed to share with my ward that I still knew these things to be so true even when I am going through a major nightmare and trial. So of course, Mike calls me at home that morning crying and telling me the Doctors news. It was not good. We were told that the medication that they put Kaidence on to help improve the blood pressure in the lungs worked so well that it was making Kaidence's heart bigger and sicker. They told us that her heart was so big that it had collapsed her left lung completely. They told us they they needed to take her off of the lung medication which was the medication that was giving us a shot of getting her on the transplant list. They told us that Kaidence was critical and could go into cardiac arrest at any moment and that chest compressions would damage her heart beyond recovery. They asked for us to give permission for Kaidence to go on ECMO (life support) if that were to happen. They would then give Kaidence 1 week on ECMO and if we did not see any improvment we would then have to take her off to die. They decided to take her in to an emergency Cath test to see if by any small chance that her lung pressure looked better. The risk of the procedure were much higher due to her critical state. WE got a miracle. Kaidence handled the procedure perfectly and her numbers are good enough to get her listed for a heart transplant. The doctors all seemed surprised. WE now had another option.
Kaidence has been kept sedated to keep her heart from working too hard. And she is also on a ventilator to help her breath. They are trying to take stress off her heart. We get to see her beautiful eyes every so often. She is such a fighter and we will keep the faith. I still know that it would take a big miracle for her heart to repair itself, but I know that if that is a miracle that is meant for Kaidence that it will happen and if a new heart is meant for her we will also be grateful for that miracle. I know what she was blessed with and I won't give up on that until her chest is opened and a new heart is given to her. And if that happens we will forever be thankful for the beautiful gift that someone has given us. The gift of life.
Posted by Kaidence's Mommy at 2:21 PM
July 27th, 2007Kadience sent to the hospitalPhone # 662-2327 (Courtney Wright) excellent nurse July 29th, 2007; SundayFamily and friends fasted for little Kaidence. Shauntelle and Mike attended church at Primary Children’s Hospital and said it was an incredible spiritual meeting. They were touch by all the families that were there going through the same things as them. We’re so fortunate to have the Gospel to cling to at a time like this. Shauntelle and Mike felt so much strength today and are positive and upbeat about the outcome. We all know that fasting and prayers can work miracles. The cardiologists told them that Kadience would be in ICU for about 3 weeks. They will keep her on the two medications (1) The IV that helps her heart pump so it doesn’t have to work so hard, this medication will also help her heart shrink in size. (2) This IV boosts her immune system. The plan is to leave her on these IV’s for another week then they’ll try and slowly take her off IV #1 and see if her heart is able to pump on her own. During the fast we’ve all felt very strong that she has an infection and the medication will help her. We have faith that this beautiful little girl can be made whole again but know it’s going to be a long process.If the medication does not work then Kaidence will be put on the list for a heart transplant and would have to have a few of these during her life. It’s hard to come by infant donors. Our faith is strong and we know that miracles take place, no one is even thinking of this option right now.Even after this report Shauntelle and Mike are strong and know that miracles do happen. I know that Kaidence can be made whole, if it’s the Lord’s will.Shaylse and Mike are caring for McCaden and Camden and will until Wednesday night. I appreciate their love and support.
July 30th, 2007; MondayMorning: Today is a lot different than yesterday. Kadience started throwing up and has diarrhea. Her color is white and she is extremely weak. Shauntelle called in tears saying that she could not do this anymore.Afternoon: Shauntelle called and said that Kaidence looks so much better right now, her coloring has come back and she’s more alert. They’ve put a cather in her and now have a stool sample so they can test for the Rota virus. The doctors read her echo cardio gram and said that there might be a ever so slight change from yesterday but it so slight that they don’t know if it’s wishful thinking. What a relief, we’re back on top of the mountain!!!!
August 5th; Sunday:Kaidence is doing really well. She's off all IV medication and she's getting her heart medication and water medication orally. That's a big relief for all of us. Last night they moved her of ICU also. She's over two big hurdles. I know she has a long way to go but she's making great improvments the last few days. I know it's because of the fasting, faith and prayers that she's getting better.
August 5th; MondayThis morning they did another echo-cardiogram to see how her heart is pumping the blood. Shautelle has not talked to the doctor yet but her heart output has gone down from last week. When she came to the hospital July 27th her output was 15; August 2nd it was 22.9 and this morning it's 19. I'm extremely anxious to hear what the doctor has to say
.August 9, 2007Kadience wasn't able to come home from the hospital this morning as planned. She's now being treated for a blood infection thru an IV although she has no fever and looks and acts fine. I think the test was contaminated but time will tell. It will take another 24 - 48 hours to know anything and she needs to be on the IV for a week. They feel Shauntelle could maybe administer the medication thru the IV at home. They had to draw more blood today for another test but Kadience's veins are clotting so now they're having to draw blood from the forehead. Shauntelle's was pretty discouraged this morning but doing better now. I'll have the boys for the weekend so Mike can be at the hospital with Shauntelle.
August 10thThe doctor came by this morning and told Shauntelle Kadience now has 3 different things growing from her blood sample. There having an infectious disease specialist coming in. The doctor said that Kadience should be one sick little girl but she's happy and playing, It looks like another 3 - 5 days. Shauntelle is leaving the hospital and having Mike stay with Kaidence. She feels like she's starting to loose it and go a crazy, I agree she needed to be away from the hospital long before now. I told her I would spend tomorrow and tomorrow night at the hospital so she can be home.
August 12thOn the way to work this morning Brent was very emotional and started crying he was asked later in the day to help Mike give Kaidence a blessing then Shauntelle and Mike blessings. There was a strong spirit and once again we knew that Kaidence would be ok. The Lord was preparing Brent that morning for the blessings..
August 14thI left last work last night so excited about Kaidence coming home but it didn’t happen. They put her out and put the PIC line into her heart then realized afterward it wasn't right where it needed to be. They seem to think that it will fix itself. With all the great news we heard from the individual administering the echo-cardiogram the doctor last night seemed to have a different opinion. Kadience’s blood infection is clearing up and needs the PIC line so Shauntelle can administer the antibiotics when she goes home. But the doctor last night again mentioned that if Kadience’s heart does not show improvement then she'll grow out of her heart and will need the heart transplant. I chalk it up to a Monday. Sunday's are wonderful and a spiritual high then Monday comes along and things are grim. Our faith is really being tested but I will never deny the things I've felt the last 2 1/2 weeks. I know this is in the Lords hands and on his time lime not ours. That little girl deserves 100% of my faith which I will give her, if the Lord has something else in store then I know it's the Lord's will. Last night they said they'll let her go home this morning around 11:00 this morning, we'll see. Shauntelle will be giving medicine 13 times a day. She's going to be busy but I know with the Lord help she can do anything.
August 17th, 2007.Our day yesterday was good I got aup at 6:15 and was to Telle's around 8:00 and stayed until 8:00 last night. Kaidence is not eatting really well she only had 3 (4oz.) bottles yesterday. Shautelle talked to the dietitian about pulling the feeding tube for a day and see if she'll do better. She really needs to eat because that shows whether she's getting better or not. Shauntelle's a little discouraged this morning and worried about her eatting. Mike said yesterday was a hard day being a work, he said the more he talked about it to others the more he realized how scared he is about what could happen. I told him his feeling are very natural, I've had the same feeling as a Grandparent but told him what Dad (Brent) had told me about the 100% faith. I hope he still realizes that he needs to talk about his fears.August 21stKadience had her first appointment at Primary Children’s Hospital. Her heart is the same, no change. However, she's up to 14 lbs. right now which is good. The cardiologist said this is a long process and said that her heart could repair itself all at once or little by little. They'll up her heart medication next week. The doctor said she looked so much better than she did in the hospital. Shauntelle said that she's eatting more on her own and less thru the feeding tube. Hopefully next week she'll be off the feeding tube.
August 22The night beofre was a little rough, she wimpered all night and was sweating terribly, Shauntelle was really worried that her heart was pushing down on her lungs so couldn't cry and was concerned about the sweating. Shauntelle took her to the doctors yesterday and they said her heart, oxygen etc. all looked good. We'll see how last night was. I feel so extremely blessed and acknowledge the Lord’s hand in her life. I feel so lucky to have her in our life and know there’s a reason she's here at this time. I feel comforted knowing that her life is in the Lord's hands and he knows what's best for her.
August 23, 2007I watched Kaidence yesterday while Shauntelle left to get her hair cut, it's been over a year and she needed to do something to feel better. I was able (with the Lord's help) to give her medicine thru her feeding tube then I took her off her PIC line, sterrilized everything and administered heart medication thru the PIC line. I was nervous but it worked out ok.Kaidence's blood test came back and the liver etc seems to be functioning well, her pep tides (in her blood) were over 4,000 when she entered and now there around 1,600. That's still really high but it's gone down. So that's good news
September 5, 2007Kaidence is on the down side again and barely taking 7 oz. a day by bottle, of course she's getting the rest by the tube. She's cutting teeth so we hope this is why she doesn’t want to eat. We'll see what the doctor says. September 13thKaidence goes back to Primary Children's Hospital this morning. They'll do another Echo-Cardiogram this morning to see if her heart output is any better. They increased her heart medication a few weeks ago while they monitored her at the hospital. Her eating isn't the best, some days it's only 7 oz. but other days she might get up 16 oz. on her own, regardless to say the nightly feeding tube is giving her the nutrients she needs. I've learned to give her the heart medication thru the feeding tube she Shauntelle can leave and take care of other duties for her boys. She is a beautiful happy baby.
September 20, 2007Kaidence is in ICU and they were able to give her a PIC line. The doctors last night were wondering if maybe she doesn't have a virus but her heart is just not doing well and that's why she has the fever etc. There not sure what's going on just thinking to themselves. She has our favorite nurse Courtney today which is a great comfort to us. Kaidence was on the prayer roll this morning which is comforting to us. Shalyse and I are going to stay with Kaidence tonight so Shauntelle and Mike can sleep in a hotel room at the hospital.
September 21, 2007Special prayer for Kaidence Prophet reading name and special prayer for her.Last night I left the hospital around 10:00 Kaidence's coloring looked much better, she was pretty out of it and slept the whole time. I was happy to see her sleeping so well for this is what she needed because she hadn't slept for almost 48 hrs. but whimpered the whole time, her lungs are not strong enough for her to cry. She has a clasped lung at this point and her pep tides in her blood are around 9,000, a normal person should have around 200. This morning the doctors can't believe she looks so good because some of her numbers aren't showing that. As of this morning her lungs are clear and the water is gone. Honestly it rips my heart out to see her like this. Shalyse spent the night with Kaidence while Shauntelle and Mike stayed in one of the hotel rooms in the ICU and got some rest. Today is a good new day, we're once again focusing on being positive and moving along. I'm so grateful to a loving Heavenly Father that loves each one of us and hears and answers our prayers. I am grateful for a wonderful family and friends that love and care for us.
September 25thKaidence is back home from the hospital, what an answer to many prayers once again. September 27thEmail to Ann PickrellKadience came home from the hospital on Tuesday night, what a blessing it is to have her home. She acts so happy and is so excited to be home. Yesterday and today she's eating better which means more by mouth and less by the feeding tube. She even had some solids yesterday. Her eating is a big sign that she's doing better. Before going to the hospital she was only eating 5 ozs. a day by mouth. She's gone up and down with the eatting so I'm praying that her eatting will stay more even. Her Peptides still show that's she is heart failure but her numbers have gone from 9,000 to a little over a 1,000. Anything over 900 indicates severe heart failure.I'm so grateful to my Heavenly Father that she's home and doing better. Thank you for adding her name to the prayer roll. We were so touched again this morning knowing that Kadience was in the brethern's prayers. We'll stay faithful and strong, I still feel strong that Kaidence will recover in time.
October 8thIt's been a busy day but I had a minute so I thought I would let everyone know what's going on.Shauntelle took Kadience back to the doctor Saturday morning, it's the third time she had been to the doctor or hospital during the week. The doctor told her to immediately take her to the hospital and not to stop at home before going and also told her to call 911 if she needed to on the way.We enjoyed and listened to General Conference as much as possible in between kids and hospital. It's always so assuring to know that we have the true Gospel of Jesus Christ, prayer, the Priesthood etc. that we can fully lean upon in times of trial.Kaidence's condition is pretty delicate at this point. The doctors talked to Shauntelle and Mike on Sunday about Kaidence's condition and she's closer to a heart transplant. Sunday was a pretty hard day for the two of them. Her heart output on Saturday was 3 - 5%. While Kaidence looks somewhat ok on the outside her heart is getting worse. A vessel which runs from the heart to the lung is starting to collapse. They want to want make sure the transplant takes place before she's too sickThey’re putting another PIC line into her heart today and they'll do a "kath" test which will tell them the specifics for the size, type etc. of the heart she'll need. Shauntelle asked the doctor if Kaidence could recover by herself at this point and the doctor said it would take a miracle. The doctor also told Shauntelle that Kaidence will not leave the hospital again until after the heart transplant. We still believe in miracles but know Kaidence's life is in the Lord's hands. Someome from Shauntelle and Mike's ward asked Elder Zwick to give Kaidence a blessing. He's coming to the hospital tonight at 8:30. .
October 9thDenise is heading for the hospital to spend the day.Last night Elder Zwick gave Kaidence a blessing. He blessed her that she would be a medical miracle that she would be strong and grow up to live a normal healthy life. Mike called her to tell her about it. Shauntelle was too emotional. What an incredible experience for Shauntelle, Mike and Kaidence.They did not do the pick line last night. After not eating for 12 hours they came in to do the pick line and said they couldn't do it and gave no explanation. They just walked out. October 10thUpdate on Kaidence: She is not doing very well the doctors said her lungs are too weak to even think about a transplant right now. The doctors from LDS, University and Primary Childrens are meeting today to talk about Kaidence. Denise will keep us updated. Denise would like to send out an Email but could not do that so I told her I would send this Email.
Posted by Kaidence's Mommy at 2:14 PM