Well, I have always told ya'll that things here change minute by minute. It turns out that the surgery for Kaidence has been moved to Wednesday. The hospital is too afraid that the equipment will not be here and set up in enough time Tuesday to feel comfortable with everything. The hospital has to get all of their lawyers to sign paperwork before the equipment can be shipped from Berlin. The company that does the Berlin Heart is awaiting a blood test of Kaidence's - if the test comes back positive we may not be able to get the heart. However, they all feel pretty confident that all will be well with the test. So that is the latest. They are giving her more blood and getting ready to do another echo. I hope I can make it this next week. I miss being together with my family. I miss Mike and my boys.
Friday, November 2, 2007
Kaidence has a big week coming up and we will be having a special fast on Sunday for KAIDENCE and her DOCTORS. If you would be willing to once again help us out we would be forever grateful. The power that comes from prayer and fasting is beyond anything else that we can do.
Well Kaidence had a pretty good night and she looks much better now that she has been given more blood. She is awake at the moment and watching Clifford on TV. She gave me a cute little grin this morning. Things still look as though Tuesday is the big day for the Berlin Heart. I am scared and excited at the same time. I have felt that things would go well with it, but am having hesitations after Ian's passing yesterday. Everybody here seems pretty excited about the whole things and are keeping busy in meetings preparing for it. The team is flying in on Monday to do a practice run and set everything up. We should get more information then. They don't have statistics to give us because everything has a confidentiality block because they continue trying to get the FDA to approve it. It's a legal thing. We will keep updates coming on the blog. Thank You for all of your love.
Posted by Kaidence's Mommy at 8:41 AM
Thursday, November 1, 2007
Today was a sad day for our PICU family as Little Ian passed away. My heart is sad for his family. Ian was a tough little guy and fought an amazing fight. He touched our hearts and I will never forget him nor his family. I will miss my PICU neighbors and our many late night visits. These people are the few that can truly relate to our emotions. I will miss Emily, Ian's little sister who would come to our room and go right over to my treat closet. I will always think of her when I eat my Oreo's. I am happy for Ian as I am sure he is sitting upon our Father In Heaven's lap with a great big smile upon his face. We love you Ian and family. Little Kaidence will miss her little buddy.
Posted by Kaidence's Mommy at 8:51 PM
Wednesday, October 31, 2007
Happy Halloween everyone! We think Kaidence looks Sooo cute in her Fariy costume. The Hospital is so nice they have trick or treating on every floor and every department. The boys got so much candy that Camden couldn't even carry his treat bag. They had a blast but we done after an hour and a half or treating. The hospital is so fun alot of the staff dresses up in costumes and makes it fun for those kids that are here or the ones that or visisting those here. It makes you feel almost normal on a holiday like this.
There is also more news on Kaidences condition. Her heart rate has finally dropped. It has been at 214 for most the morning and her temp was high. It was a big worry for a while. They had to sedate her more and use a cold liquid blanket under her to help drop her temp. Our nurse Katie has worked wonders today and has Kaidence heart rate around 130 which is much more acceptable. Kaidence looks more comfortable today and more restful, if a bit pale though.
Kaidence's doctor came by and explained that they are ready to do the Berlin Heart next tuesday. We are having all the blood work done now to get ready. The will do some test runs and workshops on Monday to make sure they are good for Tuesday. They will do the Berlin Heart if she is in the same condition as she is today. So we are pretty darn sure she will be having the first Berlin Heart in Primary's on Tuesday. So pray that she gets better or that the Berlin Heart is a big success.
Posted by Kaidence's Mommy at 3:27 PM
Tuesday, October 30, 2007
Please keep our little friend Ian in your prayers. He is Kaidence's little friend and neighbor here in the PICU and they have been here for a long time as well. They have run into some complications and need some extra prayers tonight. I will put his blog link on Kaidence's page under heart buddies. We Love You all!!!!!
Posted by Kaidence's Mommy at 8:03 PM
Well, Mike was a little sneaky snake with that last Birthday post. That is why he kept asking me to update Kaidence's blog.
Mike covered most of the day in the last blog. We did get some good news this afternoon. Dr. Everritt came in today and told us that the hospital feels that they are ready to take a step forward and have given permission to do the "Berlin Heart" here at Primary's if Kaidence needs it. What a blessing, we don't have to move. She and I were both shocked at how fast the hospital directors, surgeons and staff all gave the OK. She said that the "stars all aligned today and that everything fell into place". Surgeons have been on the phone today calling other surgeons to discuss protocol and everything else. However, the nursing staff has only had training on the device by working on a cow. Not too sure how I feel about that, but the Lord will provide what is needed if that is what he wants for Kaidence. Dr. Everritt said that whether or not Kaidence needs the Berlin Heart that she will have impacted so many lives because she has made it so Primary's has committed to the program, and given the funding to purchase all of the equipment needed to do the surgery and care for her after. They now will be able to give hundreds of children a better chance at life. The hospital is starting to order all of the fancy equipment today so that if Kaidence needs it we can do the surgery next week. After everything is set up next week the team can be here in 24 hours after being notified to provided support for the surgery and nursing. This is such a big step for this hospital and a blessing to all of the families in the region that Primary's provides care for. I can't help but think that maybe this is why Kaidence is going through what she is. Because of her condition and her serious need for more options to save her life, people have looked outside of the box and this will save the lives of many children for years to come. It gives me some peace knowing that some good has come from this. Good that will bless the lives of so many whether or not Kaidence knows it. Thank You for the prayers. They HAVE made a difference!
Posted by Kaidence's Mommy at 7:18 PM
Happy Birthday Shauntelle. Wow 29 years old. Your the best Mom, Wife, and inspiration. I Love You.
Our little Kaidence is still hanging in there. She has had a fever on and off all day today. It's gotten up to 102 today. She has also thrown up a couple of time today. So she is having a little bit of an off day. She also had another blow out. This one was so bad that even the nursing staff was impressed with the quantity. Overflowing the diaper and everywhere. She needed new bedding and a bath and a lot of room freshener. When she does something she does it big.
The social worker also came in and is bringing the list for heart transplants in our region. Primary's and Kaidence is on the top of the list for a heart in her age group and blood type. We keep our fingers crossed and hoping that today is the day. They have talked more about the Berlin Heart and the decision is still out on if Primary's is going to try the process. They are also worried on timing. We will try to be patient. We are told that the waiting is the hardest part.
Thank you all for all the prayers and comments. We love you all and want you all we are thankful for you.
Posted by Kaidence's Mommy at 1:04 PM
Monday, October 29, 2007
Well I thought that Kaidence was holding stable but apparently I was lacking some information that the nurse never passed on last night like the fever and the more frequent extra heart beats. Dr. Everritt came in today and discussed some concerns regarding changes in Kaidence over the last 24 hours. She is trying to get a game plan together in case Kaidence continues the path she has apparently started. We discussed ECMO (heart & lung bypass machine). We halso discussed the "Berlin Heart" (left ventricular assist device). This would serve as a bridge to heart transplant. However, Primary Children's Medical Center has never performed the surgery or cared for a baby with this device so the hospital has to decided if they are ready to take that step. They would have a team of surgeons that would fly in to help perform the operation. If Kaidence does need this device to buy her time until she gets a heart and PCMC won't do it we will have to pack up our little family and move away. Time is running out and we need a heart! And we need it soon. Unfortunately that is what it comes down to. Please pray that what is meant for Kaidence can be. We are watching all of her cultures and her fever that continues off and on. She can't get an infection because if we do and she gets a heart offer, we won't be able to take it. I feel so overwhelmed. Life continues, sometimes I wish the world could slow down so I could get caught up.
Posted by Kaidence's Mommy at 1:59 PM
Sunday, October 28, 2007
Posted by Kaidence's Mommy at 12:54 PM