Saturday, December 10, 2011
Posted by Kaidence's Mommy at 10:15 AM
Sunday, November 27, 2011
OLD BLOG POST FROM THIS WEEK 4 YEARS AGO (11/22/2007) WHILE WAITING FOR HER FIRST HEART!
Happy Thanksgiving! Mike, myself and the boys have had a wonderful Thanksgiving together. We woke up and drove to the hospital to see baby sis on our way to Coalville. It was wonderful to see all of our family and it was fun to spend family time with the boys. They had fun taking the 4 wheelers over to the "farm" to see all of Aunt Karen and Uncle ken's animals and of course the big tractor. Dinner was wonderful as always. Mike and the boys are going up to Ogden to spend the night with all of the cousins. I have stopped by the hospital to spend some time with Kaidence tonight.Kaidence is very swollen tonight and I hope that they can get that under control soon before we are dealing with wet lungs on top of everything else. She has had a fever again today. Her white blood count only dropped from 22.1 to 21.6 and the CRP 7.2 to 7.1. I think I was hoping for a bigger jump like we had the last few days. The other cannula site is starting to look more infected and I think they will clean that out as well tomorrow. I am praying that we can get this infection cleared fast and that nothing else is affected by it. We can't re-list Kaidence until her wounds are healed which could be a couple of weeks. Not sure though because I have not spoken with Doctor Everritt for a couple of days and we are not totally sure what her thoughts are. We had hoped to speak with her before Thanksgiving so we could at least know what the plan was and what we were looking at so that we didn't have to wonder and worry all weekend. The little glimmer of hope that we could possibly all be home together for Christmas is gone so we will find a way to make due. We have so much to be grateful for and I could probably write a whole blog on this topic. However, we are so Thankful for the wonderful support of all of you. We honestly could not due it without all that you do. Thank You for following the blog and caring for us. We are grateful to the many nurses and doctors that take so much time caring for Kaidence. We know that they honestly do the best they can and that they want what is best for our little one. Of course, we are so grateful for the gospel and the unconditional love of our Father In Heaven. I have seen more families here turn back to the gospel after their kids have become ill than one would ever imagine. Trials can teach us so much, but only if we let them.Happy Thanksgiving and we love you all. Savor this time of year and hold your loved ones close. Spend more meaningful time with your family then ever before and get back to basics. In the BIG picture it is all that matters.
Posted by Kaidence's Mommy at 11:41 AM
Thursday, October 27, 2011
First of all I want to invite you all to join us for Cupcakes 4 Kaidence. Here is a link to the CupCakes 4 Kaidence blog. Or check out her Cupcakes 4 kaidence FB page! This is a fundraiser that is being put on by my amazing sisters, family and friends for Miss K! I cannot believe all they have done and was shocked to learn they were secretly planning this. We hope that you will help spread the word!!!!! Thank You all for loving Miss K!
Miss K's cardio appt monday went well. It was nice to get everyone on the same page. Ya know that Disney World vacation that has been in the works for a couple of years? The one that was getting canceled because K needs a new heart? Well, I was shocked to hear cardiology tell us that we need to go. You feel a little better about things when cardio gives you their blessing on something like that. My boys have NO IDEA! So, please keep it quiet. I am feeling a little overwhelmed knowing that it's back on and I am not ready. I am thinking of leaving baby home so that I can really focus on my 2 older boys. They need it but I am still torn with what to do. My kids will be so excited. The boys never complain about all the times something fun gets canceled because K is sick. They totally deserve this trip!
Wednesday we met with the surgeon. I am sure he thought I looked crazy because I have welts/hives all over my body. Today I went and saw the doc for myself and got on some steroids for it. Seems to be helping. So if you see me and I look a little rough, lips or eyelids are swollen....you'll know why! Back to the surgeon. Heart Transplant the second time around is highly risky. What else do you do though?
Today Kaidence was re-listed. She is officially on the list. She is a status 2. An estimate wait time for her is 3-6 months. It scares me to wonder if her coronary arteries will hold out long enough for her. It's such a hard thing wanting your daughter to live but knowing the only way she will get that chance is when tragedy hits another family. I cannot wish for that. I would never wish that a family would lose their child so that mine could be saved. I wish that no parent ever had to think of such things! My prayers will continue to be what they were the first time. That IF a family was faced with such heartbreak that their hearts would be touched and they would want to share that heart with another child. I feel strongly that Devohn, K's heart donor has his hand in a thing or two. He is fighting hard. With all that her little heart has been through.....it just keeps going!
With the same time of year approaching when K was originally listed, I have found it interesting to go back and read post from 4 years ago. Here it is from 4 years ago today. http://4mykaidence.blogspot.com/2007/10/kaidence-continues-to-poop-sleep-all.html
Please don't forget about CUPCAKES 4 KAIDENCE!!!!! Now please go and help spread the word!
Posted by Kaidence's Mommy at 3:44 PM
Friday, October 21, 2011
First things first.....Happy Birthday to my wonderful hubby!!!!! Kaidence sang Happy Birthday to Mike this morning into the phone from the hospital and Mike said it made his birthday because he could actually hear her sing to him!
This is post is going to be sporadic. Today I feel discouraged. I think mainly because I am so tired. I don't think straight when I am tired. Hopefully tomorrow I will feel ready for all of this.
We are home. We still do not have many test results back. I do know that as of now her rejection is not completely gone but in control enough that she can be re-listed. That is a relief! We are awaiting the antibody test and will have those results on Thursday at cardio. Dr. E will present Miss K once again at the transplant meeting with the other transplant docs throughout the valley this Tuesday and Wednesday. This way you get many minds working together. She will be re-listed this Wednesday.....Big sighhhhh!
Kaidence looks and feels great. She is full of energy. Her appetite is incredible. Dr. D commented today that with how bad her coronary arteries are that he doesn't know how her pressures still look great and how her heart is still getting enough blood....but it is. I will take that as another blessing!
Thank you for checking in on us......
Posted by Kaidence's Mommy at 9:03 PM
Thursday, October 20, 2011
Today seems like a dream. Not my favorite dream but a dream none the less. I cannot believe we are really doing this so soon. I have many mixed emotions about everything. I have grown so attached to our sweet donor family. No matter what happens, we will always be family. They have given us what no one else could. They have changed our lives for the better. I hope they know how grateful they are for what they have given to us and for the relationship that we have with them. They are wonderful people. I love that little angel heart that has been beating within her chest!
Posted by Kaidence's Mommy at 11:11 AM
Posted by Kaidence's Mommy at 8:00 AM
Tuesday, October 18, 2011
Modays appointment was bumped to today because of the stomach flu that I had. Kaidence's heart function still looks good but now her heart shows that she has another heart valve leaking. Her Aortic valve. One that has never leaked before. Dr. E doesn't seem to think that it is related to the CAD but her gut tells her to bump up Kaidence's heart cath to this week. We would have done the cath today but she just ate a banana while waiting for Dr. E ;( Her heart cath will be this Thursday!
I can't help but think this leaky heart valve is Heavenly Father's way of making sure the timing in things works out for Kaidence. I do not doubt that His hands are guiding things along. If she needs to be re-listed....lets get it done! If things are improving then what a blessing that will be!!!!
Who knows what they will find on Thursday. I have a feeling that it will be a big, busy day for us. If she is re-listed, it will be the same week that she was listed 4 years ago. Crazy huh? Maybe on Mike's Birthday (his bday is Friday). Am I ready to do this again? Not so sure but I guess I am as ready as I will ever be.
I do feel that Kaidence maybe does need a new heart. It's a hard thing to think about. This little heart within just keeps working and fighting hard for Kaidence and I have no doubt that it will do that for her until she is ready for a new one. It came from an amazing little boy. We feel peace and comfort. We are grateful for your many prayers in our behalf and would be so thankful if they would continue. Thank You for all the kindness you have shown. We really couldn't do it without you!
Posted by Kaidence's Mommy at 3:20 PM
Monday, October 10, 2011
A sincere Thank You to all who have prayed for Kaidence and for those that fasted yesterday. I even know some little children that chose to fast for Kaidence. That touches my heart deeply. We feel so much love and peace in our home. Even moments of joy in our hearts. That my friends is what your prayers are doing for us. Please keep them coming.
Today was another clinic visit. It will be a busy week with different appts. We have a total of 5 doctors appointments this week.....yikes! Cardio went well. We met with Dr. E and she confirmed the 'game plan'. Things are ready to go. We will set aside the day after her heart cath to meet with all the different teams if we need to list her. Some of you may know that we have had a big trip in the making for years. That trip is to take place next month. Tickets have been purchased for a trip to DisneyWorld. The findings at the end of the month will determine whether or not that trip will still take place. Until then we will wait and count our many blessings!
You may start to see us out and about a little more. PLEASE, if you are sick stay away. We would love to visit with you but Kaidence getting sick would cause many problems for her at this point. It could even keep her from getting a new heart. We may venture out to church in a few of weeks. If you plan on taking your child to church sick....please let us know so that we can keep Kaidence away. Miss K loves going to primary and she needs it just like other kids do. She may be sporting her pink mask but hopefully she can get out a little more.
Todays echo still looks good. In fact, her leaky heart valve looks improved. Still no signs of the coronary artery disease on her echo. We are watching things closely. Her next heart cath is on the 27th. Dr. E has been out of town since the day of her heart cath. I was finally able to talk with her and let her know what Mike and I have decided. I also let her know that I recognize that it's out of my hands. I went on to tell her that we have been fasting and praying for her as well as Kaidence. She is grateful for the prayers. We all may not believe the same but in the end our prayers are all heard by the same God and those prayers are all meant to bring good to another.
How good it feels to turn it all over to Heavenly Father. I am grateful for the good days that we have. We are being blessed. Thank You all for your kindness. We have been blessed by many good deeds. The food that is filling my freezer is such a blessing. Our pharmacy gave her a gift certificate for the both us us to go get manicures together. She will LOVE getting her nails painted. What little girl wouldn't? Our lawn was mowed by a wonderful ward member. The cards we receive with kind words cheering us along are appreciated. To our sweet friends at Grow Up Great .......Thank You for the dance classes for Miss Kaidence. She is SO EXCITED!!!!! You know her all too well. You have given her another opportunity and moment to be a little girl. I cannot wait to watch her dance until her hearts content. Hoping for many more years of dancing to come!
We are full of gratitude for all that we have been given.
Elder Scott has recently counseled: “Trust in God … no matter how challenging the circumstance. … Your peace of mind, your assurance of answers to vexing problems, your ultimate joy depend upon your trust in Heavenly Father and His Son, Jesus Christ” (“The Sustaining Power of Faith in Times of Uncertainty and Testing,” Liahona and Ensign, May 2003, 76, 78).
I have loved this talk
Posted by Kaidence's Mommy at 12:28 PM
Thursday, October 6, 2011
Dearest friends and family,
I wanted to let you all know that on Sunday we will be holding a special fast for Kaidence and her doctors. Our sweet ward family will be joining us and we would love to have you all remember Miss K in your fast and/or prayers.
This is from a conference talk from years ago.
"Fasting in the proper spirit and in the Lord’s way will energize us spiritually, strengthen our self-discipline, fill our homes with peace, lighten our hearts with joy, fortify us against temptation, prepare us for times of adversity, and open the windows of heaven."
"Fasting, coupled with mighty prayer, is powerful. It can fill our minds with the revelations of the Spirit." Joseph B. Wirthlin
We testify of the real power of fasting and prayers. It brings knowledge and it brings peace. What great blessings these two things are. We know that Heavenly Father will guide us as to those things that are meant for Kaidence. That she will be able to full fill her mission on this earth no matter how long or short that may be. We trust in Heavenly Father....We have Faith in His plan for her!
Thanks and Love to you all!
Some have asked about why we fast and what it is. Here is a link to a talk explaining fasting
Posted by Kaidence's Mommy at 11:52 AM
Wednesday, October 5, 2011
Monday's cardio clinic was fine. Her echo still looks the same and so that its good news for now. Things are all lined up and ready to go to re-list her for a new heart. We should be able to get her listed within 24 hours of those changes. Cardio will move quickly! Until then we just watch, wait and pray that nothing happens during the time between. Her next biopsy will be at the end of this month. Did you realize that it was 4 years ago this month that Kaidence was listed for her first heart transplant? October 16th to be exact. It seems all to familiar.
We chatted with Rainbow Kids about paper work that needs to be drawn up for Kaidence if something were to happen to her. It will entail 'what measures' we would want taken in the case of an emergency. We don't have to use the paperwork but IF we needed or felt that it was time to stop and let her go.....we would have the paperwork necessary to do so. Such yucky stuff to think about. Hoping to not ever use it.
Kaidence is doing great. She is feeling well and wants to go and play. This house arrest gets old pretty darn fast for a 4 year old but she hardly ever complains. We are praying that this stomach bug that has been gracing our home for the last week will somehow skip over Kaidence and her weakened immune system. Prayers! All the boys and Mike have had it already. McCaden was recruited to it last night. We came home from the temple to a puking child. Oh how I pray that Miss K can avoid it!
Friday we were able to get family pictures done. That feels like a big accomplishment. Carden was a terror through it and Mike had the flu.....but they are done! We stayed home for conference weekend and were able to enjoy all the sessions. I cannot wait to go back and read some of those talks.
Kaidence is so excited for the cold snowy weather, crazy girl. She has been begging us to have a fire in the fireplace. She keeps telling us we need to because it's 'so chilly.' Tonight, we will be having a cozy fire with hot coco and maybe some s'mores. We are trying to settle into the normal routine around here again and I think that we are doing pretty well with it. Better than I thought. I am able to let her go and do things on her own around the house and not hover over her 'in case' something happens. That has been a HUGE blessing. We know that whatever happens, things in time will be ok for us. We know that no matter what, Kaidence will be great. I have put everything in Heavenly Fathers hands and turned it all over to Him. We will do what we can for Kaidence but in the end....He is in charge. We will continue to wait on the Lord for guidance and keep looking up!
Thank You to my dear friends and family that are helping out with my kiddos. It's such a blessing to not have to haul Carden to cardiology (that just amplifies the stress). For those that have brought in wonderful meals and freezer meals.....Thank You. They are a blessing to us. After a long day, it's so nice to partake of something that was made for you out of love. We don't feel alone and forgotten.
Thank You all for your prayers. I informed Kaidence's doctor the other day that for just as many prayers that are going out for Kaidence, the same are going out for them. She appreciated that. Your prayers mean the world to us. I have faith in your prayers!
Posted by Kaidence's Mommy at 8:30 AM
Thursday, September 29, 2011
I am sorry to wait so long to post. I know that we have many wonderful people checking in on Miss K. Truth is that we really don't have much more info than we did before.
Today she finished her 6th dose of IV steroids. For the first time ever.....she wanted to come home. Normally, she cries when its time to leave her friends at the hospital. She was ready to get back and play with her brothers.
Kaidence is physically doing well. She has been pretty tired the last 2 days but cardio seems to think that the rejection may be catching up to her. Tonight, being home with her brothers seemed to lift her spirit and level of energy. She even ate a good dinner (Thanks to one of my MANY wonderful friends). In 2 weeks we will try to get back to her normal activities and let her live as normal of a life that we safely can.
We bumped her echo up a day earlier because of the fatigue. Her echo still looks great. When people have Coronary Artery Disease certain parts or walls of the heart don't have good movement but Kaidence's are moving well. Her heart just hasn't gotten the memo yet as to how sick her arteries are. I pray it stays that way!
The shock is still so raw but things are starting to set in a little more. We have talked with Kaidence and she will help us make the decision on whether or not we list her for a new heart. She knows that either way we will be ok. Now some may think that you cannot let a little 4 year old help make this decision BUT Kaidence is different. This little girls understanding in some areas is far beyond mine. She knows her heart is sick but she doesn't feel sorry for herself. She lives her life to the fullest. She is so happy despite all she goes through. Over the years we have talked about death when she has brought it up. She tells me what she thinks heaven will be like. When letting her know the other day that she could help us choose what we should do she said that when her heart got sick that she wanted to and be with Jesus. I told her ok and then we talked some more about what she thinks heaven will be like and who will be waiting for her. I don't ever want her to feel like she cannot move on because of how sad we will be. However, the next day she woke up out of bed and one of the first things out of that little girls mouth is "I want to get a new heart".
So as of now and if or when the time comes we will re-list her for a heart. She may change her mind and that is ok too. If she wants to fight to live, who am I to tell her she can't? I don't know what Heavenly Father has planned for my baby girl. I hope and pray that if she has to leave us for this time that it will be in a peaceful way and time. I don't want her to get that sick again. This little girl knows she is loved and treasured. Her spirit is precious. She has no idea of how many hearts and lives she has touched but one day she will know.
The boys are hanging in there as well. I have such amazing boys. I am so proud of them. We are trying to be honest as to what could happen but focus on the now while still keeping that communication open for them to express themselves. I don't want them to be afraid to talk to us or ask us questions. Kids are smart and they need honesty on their level.
Monday we will have another echo. If ANY changes are detected they will re-list Kaidence. Her next heart cath will be on October 27th. I hope and pray that somehow and someway this disease will no longer be or that it will lessen in severity and she can be safe. It shouldn't happen but I know it can happen, I just don't know if its part of Heavenly Fathers plan for her.
I want to thank you for the love and kindness you have shown. Your prayers are lifting me out of the torment that has had my heart for the last few days. I ask that you also please pray for her wonderful medical team. I pray that they will be in tune to promptings even if they may not understand the reasoning. Your prayers for our family are the greatest thing we could be given at time. Mike and I are still trying to figure it all out.
"Be not afraid, only believe" Mark 5:36 If Kaidence isn't afraid, why should I be?
Posted by Kaidence's Mommy at 10:49 PM
Tuesday, September 27, 2011
WARNING: This post is not sugar coated. So if you are looking for a positive post....please stop by another day!
Yesterday's heart cath turned out to be a nightmare. I keep asking myself it it really happened the way it did. We left for the hopsital at 5:30am for our heart cath. I felt such great peace and had no worries at all about the outcome. I honestly felt that it was going to look great and that we wouldn't have to return for a whole year. My mom was going to meet us up at the hospital to plan out DisneyWorld trip for this November. Instead everything started falling apart.
E the transplant coordinator came out to get us instead of having the pager they give you alarm. I knew something must be wrong. When we got there the whole transplant team was awaiting us. They shared the news that Kaidence has Coronary Artery Disease. It was not seen on last years biopsy but it is rather obvious that it is there. They showed us last years pictures compared to this years.....the difference was obvious, even to the untrained eye. Cardiology talked about the possibility of re-listing Kaidence for a new heart. It would be harder for her to get a heart the second time around because she has developed antibodies against 65% of the population. That narrows the donor pool drastically. Or we could choose not to re list and just enjoy the time we have.
One thing about this disease is that at any given time she could have a heart attack or stroke. It was explained to me that they would likely be fatal. They said that if this did happen she would die quickly and painlessly. I cannot believe we even had that conversation. It terrifies me.
This disease is more common in transplant patients years down the road. Why she has it.....no one knows. It could be the rejection episodes or something else.
To top it all off, as Mike was getting the car to leave the hospital cardiology chased us down to tell us that Kaidence was also in rejection and that she needed to stay in the hospital for treatment. We should be here until Thursday. She will once again be on house arrest. So if you are sick......you know the drill by now (especially with winter coming.)
1. Medications- They are putting her on 2 new medications (for the disease and more for the rejection)in hopes that they will help slow down the disease. I asked how well they worked. The reply was "if they worked great, we would have all of our transplant patients on them." So I guess it sounds like a last ditch effort.
2. Watch and wait- Did I ever tell you how I LOVE waiting? We will treat the rejection and CAD. In about a month (right before we are supposed to leave to Disneyworld) she will have another heart cath to check if the disease is progressing. If it looks like it's still progressing then we will decide if we want to list Kaidence for another heart. I don't know what we will decide.
3. Frequent Appts- We will keep in close contact with cardiology. She will still get her echos and they will closely watch her heart function. At this point, her heart function is good and has not been affected. If things start to change, that would be another indication of that things are getting worse.
The crazy thing is that everyone thought that things were better than they have been in awhile. Her last few echos have looked great and shown improvement in function AND her leaky valve. How can all this be getting better but then we have this lurking in the background? It just doesn't make sense.
We are tired, heartbroken, uncertain and I am trying so hard to not be angry. I don't want to be. I cannot help but wonder why? I think I am still in shock and unsure of how I can do this again. How my family can do this again. I have great anxiety over her having a heart attack/stroke and me not being able to save her. I feel numb. How do you move forward with 'normal' life? These are just some of the nonstop things going through my mind. What we will do....I do not know.
I pray that I will start to feel the love and comfort of our Heavenly Father. I pray for guidance in the days to come, I pray for another miracle and I pray for peace. I pray that Heavenly Father still knows my heart, he knows I want what is meant for Kaidence. I pray that he will take care of everything and that I may be prepared for whatever comes our way.
I feel that I am always asking for prayers. I need them, Kaidence needs them...our whole family needs them. I am craving the comfort and peace they bring.
We are so grateful for the many wonderful years that we have been given by Devohn's family. The heart that is in her little chest has given us so much. It is because of them that I have had the opportunity to know my daughter, her personality, her love of life, her strength...her Faith. This is hard on them as well. Please remember them in your prayers.
I will post when I know more....
Posted by Kaidence's Mommy at 1:43 PM
Sunday, September 11, 2011
Yesterday was just one of those days that you don't know what to do with your kid. Do you take them back to the hospital or leave them home and try to work through it? As I said in the earlier post, we have really struggled with K's O2 levels. Today, she has still needed extra oxygen and her cough continues to be awful. I am starting to worry that pneumonia will be right around the corner if I can't clear this junk out of her.
Last night was the balance between keeping your kid comfortable without suppressing their respiratory system. I decided to cut the lortab dose in half for her in hopes that it would still help her feel better without making her sats take a nose dive. It seemed to work well until the fever came. I then went for a full dose of Tylenol keeping my fingers crossed that it would both ease the pain and relieve the fever. It worked well and I dumped the Lortab since its no longer needed (I don't want that stuff hanging around when it's not needed). Her sats through the night as well as today have continued to struggle but seem to be making slow progress. She has been getting headaches but I think they may be due to all the nasty meds in her system and the lower O2 sats. I am keeping my fingers crossed that her heart is still holding steady. With all this stress on it, her heart rate has sure increased.
Eating and drinking have not been too successful around these parts for Kaidence. I really thought that she would be running around and ready for her first day of preschool on Tuesday but I am not sure that will work out. Today she told me that she just "wants to be normal again." Poor girl feels so icky but I LOVE the fact that she thinks her life is NORMAL....I find humor in that. We will take one day at a time and let her recover at her own speed. Thank you for your prayers. They have been felt.
Posted by Kaidence's Mommy at 4:26 PM
Saturday, September 10, 2011
Sorry for not posting. I wasn't available for such things and K needed me. Her surgery yesterday took longer than expected but seemed to go smoothly. It was just very detailed. Dr. S found kaidence's severed nerve leading to the vocal cord and basically spliced it together with a new nerve. This will bulk up that left vocal cord. He isn't sure if the cord was severed during transplant or when they placed access lines in her neck. Either way, it was severed. He then went over to the right vocal chord. This nerve functions but not that well. It too has seen damage from the many breathing tubes she has needed. He decided to cut a square into her voice box and then plug a new nerve into the muscle in her voice box. This little nerve will start to sprout and grow new branches. This will help make that right side stronger.
They gained access by slicing into the front of her neck. She is very sore today and has really been struggling with the pain. This morning they pulled to drain in her neck. Her O2 sats have been a concern. She woke up last night panicked that she couldn't breathe and had been pushing the nurse button over and over but her bed was not plugged in. She NEVER uses the nurse button but was panicking. With the pain, swelling and congestion she is having a hard time coughing and moving all the extra secretions. Last night her sats kept dipping but it has been far worse today. I am thinking the swelling is a big reason for it. She was satting in the 70's but I was able to get her at 90% on 3 liters of O2. That was when she was sleeping. When awake, she still needs some, just not as much. We are doing some RT on her in hopes that this will help with her sats.
Her voice is VERY soft. She isn't talking much and the sign language she learned as a baby is paying off again. Hopefully within the next 24 hours things will start to turn around for her. It's not very often that something knocks this girl down.
Thank you for keeping Kaidence and her doctors in your thoughts and prayers.
Posted by Kaidence's Mommy at 1:57 PM
Friday, September 9, 2011
Kaidence went into surgery at 9am. She was so excited that she couldn't sleep last night. She couldn't wait to "go and see her friends" I asked who her friends were....IV team made the list. Not sure that they have many friends in this place. Abby... you made her list too!
Posted by Kaidence's Mommy at 10:34 AM
Monday, August 22, 2011
I only have a second but today was another cardiology appt. Since it was also the first day of school Kaidence sported her new school clothes to cardio since she cannot go to school right now. Miss K has been praying every night that "my soldiers will get bigger and the my heart wont be in rejection." She then goes on to ask the "Dr. E and Dr. J will tell me that my heart is better when my mom calls them in the morning so that I can have my sleep over with Ry Ry."
Apparently, K's prayers are being heard. Today's echo showed some signs of improvement. The heart function on her left side is looking better. Her tricuspid valve is still a mess but still not our main concern. Overall the echo just looked better. They also did an ECG and the voltage on the looked much stronger as well. When Dr. E was shouting with joy when listening to Kaidence's heart today. The gallop in her heart rhythm was gone as last. These are all signs that the medications are working. Dr.E seems to think that we have a good handle on things. Also, Miss K's white count is holding stable. We will continue to plan on K's vocal chord surgery (3rd times the charm, right?) September 9th. We will be on house arrest at least until then.
We feel so grateful for the good news that we did get today. I don't ever expect things to be perfect but I do love things to be heading in the right direction......
Posted by Kaidence's Mommy at 8:55 PM
Wednesday, August 17, 2011
Here is a quick update as to the happenings of Kaidence. Yesterday cardiology called and asked if we could bring K in for another echo today. Dr. E was a little concerned about the gallop she heard at the last appt and wanted to make sure her heart was not getting sicker.
Today I hauled all four kids to cardiology.....enough said. K's echo still looks the same. At least it's not any worse. Dr. E said that she doesn't expect an improvement in her echo YET. It will take more time. Bummer part was to hear that she has a slight decrease in heart function on the left side. This is a first for this side of her heart. However, it could just be the rejection and it's not a big decrease. It's still functioning within normal range, just not as 'snappy' as it was. The gallop that was heard on Friday, has improved. It's still there but not as frequent. This and the decrease in HR at night is a good sign that we are heading in the right direction. If all continues to go well, we can treat this episode at home. If things don't clear up then we will go in for IV steroids. We will have an appt Monday and see how things are looking. Oh how I would love to hear that her echo shows signs of improvement. That would be WONDERFUL! It just seems like ever since last August...the road has been a little bumpy. Never getting back to where we were before the rejection. Not complaining at all, but I would love for that smooth sailing we had going on for awhile there. Loved it!
Kaidence otherwise is doing well. These steroids put the spunk in her. They make her crazy happy. Crazy like she is on something that she shouldn't be. She is bouncing off the walls, teasing her brothers, running around. She thinks everything is hilarious. She is somewhat of a handful. She will sure miss her brothers when they go back to school Monday. I think I'll be playing a lot of Barbie's.
We will keep you posted. Thank You for all you do for our family. We are grateful for YOU!
Posted by Kaidence's Mommy at 3:30 PM
Monday, August 15, 2011
We have soldiers people! According to cardiology TOO MANY soldiers but that wont last too long. Kaidence's bone marrow really kicked into gear with those shots and we feel very reassured by that. We don't have the results from the virus' we are checking for but K does have some sores in her mouth. They are thinking this may all be linked to a virus and then the 2 big doses of IV steroids from the hospital stay. We will take it!
Onto the heart. We cannot wait any longer to start treating her rejection. Today Kaidence's heart beat has a gallop in it. This is an irregular sort of beat that can go hand in hand with rejection. A sign that maybe the rejection is now making itself more obvious. She did not have this on Friday. We feel extremely blessed in the timing of this today. White count up = we can now treat her heart for rejection. We feel so grateful that we don't have to wait a single day longer to start treating her heart. I was concerned that if things with the white count did not improve so quickly, her heart would get sicker and sicker and we would not be able to do a single thing about it. I feel great relief and peace.
Today we will start back on the steroids and other fun rejection meds. She will continue house arrest. House arrest for the boys has been lifted. They can go to a friends house (as long as everyone is healthy) but no friends over here unless they play outside. The boys will be happy to get OUT! We will do the steroid burst at home with oral steroids. Hopefully this will take care of it all. We are still keeping fingers crossed for blood results but are grateful for what we do know.
We will do labs and an echo on Friday. We will know more then.
This morning before we left, Mike gave Kaidence a blessing. I have felt such peace. I wasn't even sick to my tummy this morning. Thank You for your prayers. They have been felt immensely. They have brought peace to my mind, heart (and stomach). I have felt great comfort over the last few days. Therefore, I have not been placed in the 'funny farm'.....yet! Thank You, Thank You and Thank You. We are grateful to you for taking the time to pray for our Kaidence. They were heard and felt.
Posted by Kaidence's Mommy at 12:39 PM
Sunday, August 14, 2011
We have spent the weekend at home cleaning to keep Kaidence germ free for the next few days or however long. I have stayed busy trying to keep my mind free from wandering to the "what if" part of it all. Today I have been sewing some masks for Kaidence to wear to the hospital since she has outgrown all the old ones. I made these ones pink of course.
Kaidence is doing well and has not had any fevers. She has done great with her shots. All she asks for is a cute bandaid and a sucker. Her appetite today has not been so great, but that's ok. Her heart rate is a little higher than normal but we cannot do anything about that until we take care of her white count. Energy level is great and she seems happy.
I try to find a blessing in all things. Sometimes it may seem a bit of a stretch to come up with something and other times I realize that its been starring me in the face the whole time. I just hadn't looked for it. I have been trying to find blessings from all this the last few days. Here is what stands out to me.
* Kaidence's appt was moved up 2 weeks. If that had not happened we NEVER would have known that she had no white count/immune system. Therefore, she would have spent the weekend camping at Heart Camp and swimming with a bunch of other kids. She would have gone to church (germ fest) as well. She would also have been starting preschool. All along taking the extremely high chance that she would pick up on something that could possibly kill her. We wouldn't even have known that there was a problem until it was too late. This could have been life threatening to her.
By thinking this way it helps me remember that Heavenly Father continues to watch over Kaidence. He loves her and has not forgotten her. The prayers have been felt. I still get nervous when I start thinking too much about things but for the most part I have found great peace. I have tried not to dwell on the unknown and my mind is staying calmer than I thought it would. I know this is because of all the prayers. I have NO DOUBT!
Tomorrow will be a big day for labs. Likely we will only get the white count back tomorrow and not the others. Whats a few more days of worry? I hope that things will settle on their own. I am hoping that this is all from something that won't have adverse consequences for Kaidence in the future. That her heart will stay strong and calm until the white count is resolved so that we can treat the rejection safely.
Thank You again for all your love and prayers. We will see what tomorrow will bring. Hugs to you all!
Posted by Kaidence's Mommy at 5:38 PM
Friday, August 12, 2011
No heart camp tonight :(
Cardiology today was blahhhh! K has a little cold and ear infection still. Her echo still looks the same. Dr. E thinks that Kaidence is in mild rejection. Today a bigger problem presented itself. Kaidence's bone marrow has stopped making white cells. White Cells (AKA soldiers in our house) fight off the infections (Bad guys). Kaidence has ZERO soldiers. Why? We are not sure. Could be meds she is on, a handful of virus' or Post transplant Lymphoma. We are focusing on looking into meds or virus' being the issue. If that doesn't resolve the white count then we will move onto the Lymphoma part with the oncologist. I am trying not to cross that bridge unless I am forced to.
Today we removed her from the antibiotic for her ear infections & decreased her Prevacid. She has started shots that will hopefully stimulate her bone marrow into making white cells. Mike will give her shots daily. We will check back in with cardiology on Monday and run a lot of labs to check for those virus's and the other.
Back to the rejection. It would be far to unsafe to start treating it now without her bone marrow not producing white cells. So we wait for her count to come up and then treat the rejection. Its not ideal, but we have no other choice. The good news is that her heart and body are still handling things from the heart standpoint.
PLEASE stay away from us if you have been around anyone sick. Kaidence is in a very dangerous situation at the moment. She is not at the hospital only because she would be more likely to pick up on infection there than at home. She has nothing to fight any illness at the moment. So please help us out for the next little bit with that request. We have been told to keep the boys home as well until this resolves.
As always your prayers are felt and keep us going. Some days I feel like I am saying a constant prayer in my heart because that's when I feel the most peace. We would be so grateful if you would keep Kaidencce in your prayers. Our hearts all already forever grateful for all the many prayers said in our families behalf. Love to you all.
Posted by Kaidence's Mommy at 1:32 PM
Monday, August 8, 2011
Really, I feel like I am going crazy. The ups and downs seem constant the last few months. We had the crazy radiologist a month or so ago sending us to the hospital in heart failure and it really wasn't anything (Don't get me wrong....SOOOO grateful) and then this last week at a routine clinic visit being told that she likely was in rejection and hospitalized, then no rejection (sent home and on vacation )and now they think it may be rejection after all. We did get to leave from the hospital and go on our scheduled vacation to Midway. That was wonderful but now after today's news my emotions are tired, no better way to put it.
Today I talked with cardiology and they are still concerned. Kaidence's main cardiologist was out of town when Kaidence was in the hospital and today was her first day back. After looking over all of Kaidence's info, labs, echo, heart cath......she is concerned. We have bumped up our cardiology appt from 2 weeks to this Friday. Pathology seems to think that the tissue from her heart looks suspicious for both vascular and cellular rejection cells. Not sure why this looks different from the main biopsy rejection test they did last week. I will ask more about that on Friday. She also seems concerned over her tricuspid valve leakage being worse. We are still awaiting the results of the test they did that checks for the number of different antibodies that fight against her heart. She may have none or she may have a bunch. This number may determine if they decide to start treating her.
1. Echo looks worse: slightly decreased heart function and right heart is bigger.
2. Low voltage on ECG (seen often with rejection)
3. Suspicious cells may be present according to pathologist.
4. Tricuspid valve is very leaky (sign of rejection or need of a new valve)
5. Seriously big neck veins (sign of rejection)
1. Kaidence looks GREAT!
2. Eating well, no upset stomach
3. Heart Cath pressures looked good
4. Has a lot of energy
5. Heart rate has been nice and low
6. BNP is down from February (lower is better)
7. Her parents love her, she has awesome brothers that have incredible Faith and she has many people praying for her!
So we will wait and see what cardiology decides to do. I should know more on Friday. Did I mention my anxiety level is on the rise?
Today we went and registered Kaidence for preschool. Something so normal that I wondered if this day would ever come. Oh how I hope she gets to go. She is so stinkin excited. We got all her school shopping done and she is already counting down the days. If she does need to be treated for rejection it will put a damper on that.
I will trust as I try so hard to do. Sometimes its harder than others. I am tired of the ups and downs. The roller coaster of emotions becomes a bit much at times. However, I will try to keep my chin up, count my blessings and keep moving forward. Today Paul Cardall posted this thought on FB and I LOVED it the moment I read it
We have no right to ask when sorrow comes, "Why did this happen to me?" unless we ask the same question for every moment of happiness that comes our way.
With all sincerity in my heart I Thank You for your continued prayers........
Posted by Kaidence's Mommy at 6:59 PM
Friday, August 5, 2011
*THIS POST IS FROM YESTERDAY. COULDN'T POST, BLOGGER WAS DOWN*
Well once again Kaidence has the doctors a little baffled as well as her parents. Despite the echo and EKG her heart biopsy looks good. Good enough that we are out of here. The dr's said they just aren't sure what to watch for on her. Heart rate seems the safest thing to watch. She just walks around with rejection symptoms and isn't necessarily in rejection. Her echo today still looked the same because that valve is worse but her heart and body seem to be handling it just fine. Cardiology will speak with the cardio surgeon and discuss at what point that heart valve will need replacing. Likely, that will not be for years. The good thing is that now cardio knows that if her echo looks this way that her pressure and body are handling it just fine. Sorta a new baseline.
Kaidence is a little grumpy from all the steroids they have given her thinking she was in rejection and from the drugs today but that's ok because we. are. outta. here.
Such relief, so much gratitude......Thank You for the prayers
Posted by Kaidence's Mommy at 3:07 PM
I woke up this morning with the hospital tummy......no more explanation needed.
Kaidence is in cath lab. She went in like she was going to a party. I will post the pics soon. She left on time and we are super excited to know that Dr. P is her drug doc this morning. He knows Miss K very well and I totally trust him. Dr. D is doing her heart cath today....So it should be a good one. We may not be making it for our out of town getaway to the Homestead in Midway. We were supposed to leave today at noon........oh well. Thats not imprtant.
***UDATE*** I didn't even get to finish the post and my pager went off. Kaidence is all done. Her numbers look good, we don't have the biopsy results yet and will not until this afternoon. Her pressures are good and so we count our blessings for what we do know and hold our breath for the rest. She is back in her room and already had a pink slushy and a thing of milk. Now she wants food but is still pretty loopy.
Sorry I wasn't a very good blogger today. Everything moved so darn fast that I didn't have time to really update. I will post again when I talk to cardiology. Thank You for remembering my Kaidence in your prayers.
Posted by Kaidence's Mommy at 8:34 AM
Thursday, August 4, 2011
Seriously? Was it not a year ago to the date that Kaidence was admitted for rejection? Well yes it was and guess where we are tonight.....yep, and for the same thing. Next year our family will be skipping this week on our calendar.
Today was a normal clinic visit and she looks great, but her echo didn't. Her heart valve is leaking more, her EKG showed low voltage. Both signs of rejection. Her BNP is a little high but not as bad as last year.
The plan is to do another heart biopsy at 7:30 AM tomorrow. This will let us know if she has rejection, what types and how bad. We don't think it will be as bad as last year. I pray it is not, I keep recalling her suddenly being so sick, all the panic from the doctors and nurses and thinking I was losing her. I don't want to be told that I need to go and talk with my daughter by her bedside in a moment that they would normally kick a parent out of the room because she was so sick. However, I am forever grateful that they gave me that opportunity....just in case.
The other thing that this heart issue could be from is a her leaky tricuspid valve. Remember the valve that was damaged a few years back? Well, it's been getting worse and may need replacing sooner than later. We may know more info on that tomorrow as well. So for tonight we wait, prayand count our blessings. Tonight she is getting IV steroids and we will pray that tomorrow goes smoothly.
Thank You for all your love and prayers. If you need us we are in room 3084 at the house on the hill.
Posted by Kaidence's Mommy at 8:03 PM
Wednesday, June 29, 2011
Wow, last night was a great night! The original plan was to go home after surgery but when Kaidence stared having naughty O2 sats the plan changed. They then talked about her spending the night in post op to be watched over. Well, post op decided that they didn't want to take her because she was requiring more O2 than they were comfortable with. She did sound pretty darn crappy after the surgery. There is NO WAY I would have taken her home. Therefore, she was admitted to the floor. We happen to be neighbors with our heart buddy Mason. It's much funner to be neighbors up here than down in the CICU like the olden days.
Last night she did great. She really sounds good now and has perked up. Her cousin RyRy came to see her and she was so excited. They sat in her fancy bed together, made funny faces, ate slushies and got their toe nails painted. Kaidence LOVED having the visit!
She slept great last night. She was not a fan of the high flow O2. I think her throat must be so sore. She did very well without the oxygen. This is so exciting to me!!! Maybe we WILL get off all that dang oxygen and I could get rid of all the equipment! So far, it looks promising.
This morning, She woke up and said "good morning mom." She ate a little breakfast but not much. She looks pretty wasted at the moment. Her eyes have dark circles under them and her face is a little swollen. She just needs a really good nap....I wouldn't mind one too.
Hopefully we will come home later today when her probe study is all done. Thanks for checking in!
Posted by Kaidence's Mommy at 7:52 AM
Tuesday, June 28, 2011
ENT Report- It turns out that the right vocal chord that we had always assumed to be the problem is not as bad as the left vocal chord. Kaidence's left vocal chord is paralyzed. This took place during her heart transplant. There is a nerve that goes around the heart and wraps around the Aorta. During transplant it was cut or damaged. Therefore, the vocal chord was paralyzed. He injected some plumping stuff into the vocal chord in hopes that it will bulk it up and give her voice some volume. It will also make her cough stronger to help protect her airway. This plumping stuff will wear off over time. If it works...we will do another procedure and thread a new nerve into the left vocal chord that is paralyzed. The right vocal chord has had some damage too it as well, but still is working....not perfectly, but working. He also took the extra tissue away from the left side of the airway.
Posted by Kaidence's Mommy at 3:29 PM
Just got an update. They have taken biopsy pieces of her esophagus. They are placing the ph probe. They have looked at her vocal chords and will be injecting them with some plumping stuff. This may help her voice, but will not fix it. If this works, a surgery may be possible in the future to permanently fix the problem. They still need to cut away the extra tissue in her airway. So far things are going well (knocking on wood). Her vitals are great and she seems to be doing well. Keep the prayers coming. Thank You all!
Posted by Kaidence's Mommy at 2:25 PM
UPDATE: Kaidence just went into surgery ( in her wagon). It will take about 3 hours. Please keep her and the doctors in your prayers......
Kaidence is so excited to be here today. She is spoiled rotten here and she knows it. All the hugs and kisses. She has her Mermaid nightgown ready for when she is all done with surgery. Also, I have nail polish for those little piggies of hers tonight. Might as well make it a 'girls night'. She will be staying the night. She is ready to get this done and she is starving. I already have a list of foods she wants to order after the surgery. Not sure she will feel like eating. We are forgoing the anxiety meds since they make her grumpy after surgery. She usually will walk herself to the OR without needing it. Her only request this time is a wagon ride. She already spotted one in the hall.
She was able to make a quick stop to the CICU to visit our friend Abby. I swear, those two girls look alike enough to be sisters. Abby is waiting for a new heart. Her blog link is on the right side of the blog under 'buddies at heart'. Her mom Michelle is amazing and I am so grateful that we were able to contact each other. It's been a blessing for me. Please pray for Kaidence friend Abby and her family.
Thanks for the prayers and fasting for Kaidence. I cannot imagine doing this without them. I will update when I hear anything!
Posted by Kaidence's Mommy at 11:41 AM
Friday, June 24, 2011
I was hoping for a longer post but I only have a couple minutes. I just wanted to get this on her blog in time for the weekend.
As you may or may not know, Kaidence is having surgery Tuesday. It's in part the surgery on her vocal chords from last time but also to look further into what they found last time they scoped her. They will see what they can do with her vocal chords. Also, they will trim away the floppy tissue in her airway. This tissue is making it so they can't even see her vocal chords when scoped. Therefore, when they get in there and remove the tissue and that's when the decision will be made as to treatment for the chords. This floppy tissue could be the cause for her trouble eating, swallowing food, choking easily and her obstructive sleep apnea at night. How awesome would that be to get rid if all those issues?
Next up, this part is bothering me a little. Kaidence has no symptoms of acid reflux but because the findings a year ago we started her on Prevacid. Her esophagus was red and swollen. Well, after a year on her reflux meds it still looks just as bad. In fact, its pretty darn bad. We are not sure why. It could be something not great and we won't even discuss that yet. Or, it may be very treatable. We shall find out. They will biopsy pieces of her esophagus and send it to pathology, just to be safe. She will come home with a ph probe down her nose for 24 hours and then we will go back for it to be removed.
We should be able to go home later that day. We have been told that she may not have a voice for 3 weeks. But hey, Ariel was without a voice for awhile. Also, she may be pretty run down. One issue could be airway swelling. This scares me a bit!
It seems to get harder and harder to hand Miss K over for surgery. Before, it was life or death. Now she is so healthy and happy. However, this needs to be done for her own safety. I am scared but Kaidence is not. In fact, tonight she is counting down the nights until she gets to go back to her "hospital bedroom". She is counting on her Little Mermaid voice.....Oh, how I hope she gets it!
Once again we come back to all of you to ask your help. Our family is holding a special fast. We are asking that if any of you will be fasting on Sunday to please remember Kaidence, the surgeons and doctors in your fast. For those that will not be fasting, please pray for them. I have complete faith in the power of prayer. Your prayers are heard! Her surgery will take place sometime on Tuesday.
Kaidence is a strong little girl and I wish I had her strength. Thank you for all the prayers and fasting over the years. They have carried us when nothing else could.
I will update again Tuesday!
Posted by Kaidence's Mommy at 9:46 PM
Saturday, June 11, 2011
Holy Cow!!!!! I have not had a minute to post. We have been discharged. They have K on some stronger antibiotics for a bacterial infection in her lungs. This bacteria may have been festering for awhile and they seem to think that is what may have been causing problems (migraines, cough, vomiting, fevers) for the last couple of months. Its not a common bacteria to see, so it was likely missed/passed off for pneumonia. Therefore, with ALL the antibiotics she has been and nothing has touched it and she has never gotten better.
So far, she has done very well since being on the new antibiotic. Now her heart rate and O2 at night is better than it has been in a long time. No more naps and all she wants to do is run and play. She spent the day in her swimming suit, although no swimming took place. Also her appetite is making a comeback. It has taken a hit lately.
I am so grateful that our stay was short and simple. Grateful that it was NOT what was originally diagnosed from the doctor who read her chest xrays (we will not be going back). We feel so humbled and blessed. All it takes is a few seconds for your world to take on a drastic change for the good or the bad. Needless to say, after what we were told on Wednesday......We feel blessed! Thank you for your love and prayers. We have some friends up at the hospital that could really use your prayers. Their names are Carter and Megan, they would be grateful for your faith and prayers....
Posted by Kaidence's Mommy at 10:48 PM
Wednesday, June 8, 2011
Finally, my baby girl is sleeping. Kaidence has been sick for about 1 1/2 weeks. It would almost seem off and on with a constant cough. She has been napping everyday and that is so NOT Kaidence. She also has been getting some pretty severe headaches since her rejection last August. They come on so sudden and cause her to vomit. They really do a number on her.
The last couple of days her cough has gotten worse. She has slept non stop and been super grumpy. I can't recall a time that she has slept like this (without drugs inducing it). She has also been super grumpy and that is not a Kaidence thing. With the cough, she has had a hard time moving the junk up and out. She has had a couple of blues spells from this. Her heart rate has been a HUGE concern for me. 152-154 SLEEPING! That is NOT a good thing and could be a sign of that darn R word.
I have been in touch with cardiology over the last week and she has also seen her pediatrician twice. It was yesterdays appt that got the ball rolling. Kaidence looked much worse than she had the two days before. Also, she had a chest xray done at the hospital by our house. It revealed a possible pneumonia in the upper right lobe. The main concern was the fluid in her lungs most likely caused from her heart. This is where I freaked out a little...or a lot! I think I cried the whole way to the hospital. The thought of her heart being in rejection again, just broke mine.
We were admitted by cardiology so we didn't have to spend hours going through the ER. Her echo for the most part looks good. Her valve is pretty leaky and that may be contributing to the fluid in her lungs. Her xray from here showed that stuff had cleared from her lungs from the xray earlier but she still had fluid in them (if the makes any sense?) They think that she may have had a mucous plug blocking her lung and trapping the junk in and then when that plug dislodged her lungs cleared a bit. If the fluid continues, we will start her on some lasiks.
Kaidence had a good night and looked a little too good to be a sick kid at the hospital. We all know better than to think she is as good as she looks. This morning she looks pretty tired. Her coloring isn't as good as last night, she is coughing more and she does not want to eat. Also, the urine output is not so great. Last night she wanted to go walk around the hospital pushing her IV pole (ya, makes her feel cool. Like she is a big kid.) Today she walked to the potty in her room and needed to go lay down. Respiratory Therapy has started doing some treatments on her every 3 hours. So far, we are waiting on labs prograf and CBC.
It does not look like pneumonia at this moment but possibly some sort of bacterial infection that needs to be treated with a different antibiotic than those used to treat her last pneumonia and sinus infection. Kaidence does have a surgery scheduled for the end of the month to do some work on her vocal chords and her airway. Hoping that things will improve so that we can get that taken care of.
I will keep you posted. Thank You for your thoughts and prayers!
Posted by Kaidence's Mommy at 10:37 PM
Wednesday, February 23, 2011
Posted by Kaidence's Mommy at 7:59 AM