SURGERY RESCHEDULED FOR MONDAY NIGHT!

(This post was written Friday but never posted. I am too lazy to rewrite a current post and all the info is still the same. ) However, I am no longer grumpy but seem to be a little more nervous for the surgery than I was last week.

Yes, I am still frustrated. One may even say grumpy about the whole surgery ordeal. I am sick of house arrest (although we should be use to it), worried because K has already been off her baby aspirin for the 2 weeks in prep for the surgery and she needs to get back on it and concerned because as of July 1st she no longer has her secondary insurance. I guess at least we will still have the one insurance, that's a blessing. Shall we just end with the fact that I feel like I have some serious pregger hormones right now.

This morning his office called and let me know that we will not know until Monday when we can reschedule her. All the OR's are booked out and on Monday they are over capacity. Then her Doc is leaving town for 3 weeks. There is no other doctor that knows how to perform this surgery, so that is not an option.

The scheduler just called to let us know that the doc called the hospital and they will allow him to perform a late surgery on Monday night. He has a full day of appointments and will perform that evening. I guess they are over capacity, so who knows how smoothly this will go. I think my biggest concern is that at the end of the day the OR has been known to run hours behind and I have a 3 year old that does not understand the no eating/drinking for hours on end. That is why the little ones always get the first morning appointments available. I will be praying that things run close to 'on schedule' and that K will have patience and just not be hungry or thirsty that day. Easy enough, right?

Kaidence was sad that she did not get to go to the hospital and have a ride in the wagon. She also wanted to wear her new mermaid nightgown she got from Nanna and Papa to help celebrate her new Mermaid voice. What the heck, I had to unpack her suitcase anyhow, so she wore it proudly to bed last night.

My cute little Camden lost his first tooth yesterday (Thurs.) My baby boy is growing up. He was so excited. Part of me was sad because he had planned to stay at my parents house that night because of the surgery and I would miss seeing his excitement from the tooth fairy coming. I guess its how it goes. McCaden lost his first tooth the night Kaidence got her heart transplant. I wasn't even there for it. He spent the night at the neighbors and the tooth fairy paid him a visit there. Yes, I cried knowing that I missed it. Yes, I also had guilt. BUT, today they are with their Nanna and Papa at Boondocks having a great time and K and I are just hanging out at home watching Sprout Tv.

We will keep you posted on Monday. Good Luck to all our friends heading into procedures today up at the hospital. Wish we were there to visit with you over a scrumptious meal at 'The Rainbow.' Know that we are sending happy thoughts and prayers your way.

Surgery Canceled!

Kaidence's surgeon just called and canceled her surgery for tomorrow because he has a doctors appointment for himself. I guess someone forgot to let me know. AWWWWWWWHHHHHH! Bags packed, boys farmed off, Mike off work, Kaidence not sick. Seriously? This is what happens when you cancel a family vacation for a surgery. So I guess Miss K will continue her house arrest a little longer. I will end being positive "maybe this is meant to be."
THE END

Surgery Time!

Well, Kaidene's surgery date is almost here. As much as I get super nervous for these sorts of things, I am grateful that the time has finally come. The vocal chord issue with Kaidence has been a bigger issue for her than I think we truly realized in the beginning. I am so grateful that technology is where it is and that we can improve this situation and her safety, I am a wreck sending K anywhere because she does choke so easily. She had a little episode on Sunday in church and both Mike and I looked at each other and said only 5 more days.

We are scared but optimistic. Hopefully this will be the final thing that needs to be fixed from the many months that she was sick in the ICU. This is the surgery that represents that we now have a 'big girl'. She needs it to go to preschool and had to reach a certain age to have it done. Ever since we brought K home from transplant we had a list of things we needed to do or get fixed on her. Besides heart caths (she will have those for the rest of her life) this surgery is the last thing on our list (knocking on wood).

I heard her tell the neighbor that she was having "surgery on her vocal chord" she then proceeded to tell him that she would also get "an IV in my arm." So needless to say, she is prepared. She told Mike and I today that she would smell stuff in her oxygen and then she threw herself back on the bed and pretended to snore. I am not sure if I laugh or cry. She is telling others that her mommy, daddy and Auntie (a favorite nurse at the hospital) will be there when she wakes up with a princess balloon. I guess we had better deliver.

I am so proud of my baby girl. She is strong, she is a fighter and she has been blessed with a grace, patience and understanding well beyond her age. No doubt, another blessing from her Father in Heaven.

Fetal Echo Results!

I was waiting to post because I have some fun pics of Kaidence that I wanted to load.......pictures not loaded. I will post anyhow. Friday was our fetal echo and I was nervous. Our appointment was at 9:30 at Primary Children's and we took Miss K with so that she could see that others get these things done as well. Everything with the babies heart looks normal. The function is great and as of this point the baby does not show signs of cardiomyopathy. Big Sigh.........although, they were sure to let us know that things can always show up later in life.

I found Kaidence's pathology report from when she was transplanted. When they explanted her old heart it was cut up and studied and then a report was written on the findings. Kaidence had normal heart structure, besides the things that were caused from her heart failure and cardiomyopathy. So basically, no abnormal structure to it. I also read in a genetics report that all findings are still leading to viral myocarditis which led to dilated cardiomyopathy. That every test run, came up negative for any genetic findings. Cardiomyopathy is one of those diseases that does not have much known about it yet. During our fetal echo the doctor said that research is just starting to scratch the tip of the iceberg for cardiomyopathy.

So for now we are counting our blessings that so far things look well with the baby. The baby is getting pretty active, especially when I lay down for bed. We are so excited for our new little one, although it still seems so far away.
We embrace these moments of peace that the Lord grants us.

I will get those pictures loaded, hopefully this week.

OUR BABY IS...............

A ............SURPRISE!!!! I guess that you will just have to wait and see as well. McCaden was the only one we tried finding out with. Camden was pretty dang obvious and Kaidence we left as a surprise and she has been full of them ever since. We are just hoping this one will be a surprise only in the beginning.

I was nervous as today approached. They took some extra good looks at the heart. So far everything with her looks good (knocking on wood). The baby is a great size for where it should be and my progesterone shots so far seem to be doing their job and keeping preterm labor away. My migraines have finally tapered off, that is a blessing in itself.....I can function again!!! We go for our fetal echo on the 11th of this month, I know that I will be nervous all over again. Kaidence's cardiologist said that sometimes cardiomyopathy can be diagnosed on ultrasound and other times it doesn't show up for awhile or even years. However, we are all still banking on the fact that she only became ill because of the stomach virus. We are just playing it safe.

Better go. We still have much cleaning up to do. Our basement flooded this weekend. Who would have thought that 2 hours of having the toilet tank filling over would cause so much of a mess and make it into so many different rooms. Kinda sad, I had to throw away a lot of pictures from high school and other things. I guess that flooding is one quick way to dejunk!

PARANOID AND A BUSY DAY!

PARANOID!!!!!! Any one else have this problem???? I do really well for months at a time and then all of a sudden, I start to ask questions. Because we have no "positive"diagnosis for Kaidence, we have to just go off thinking it was viral. With no family history, there is always the chance that it is some genetic gene that started with Mike and I. I know for 100% that this IS part of Kaidence's plan, that I do not doubt. However, every now and again, I start questioning myself. What if we never went on that vacation? What if nobody had been sick? What if it really isn't from the virus? What if she had it all along and I never noticed? What if my other children have the form of Cardiomyopathy that isn't discovered until around the time of puberty? What if I did something wrong during pregnancy? I also have plenty of "what ifs" for Kaidence's future, but that I know is once again in the Lord's hands. This goes on and on. Normally, I don't think much about it. However, I think that with this new pregnancy the paranoid me is taking over. I know that I have my fetal echo coming up and my hands start sweating when I think about it. I knew that I would have these feeling and worries if I ever decided to have another child, just didn't think I would find myself looking so far into Kaidence's past. However, no matter how many thoughts I have of the "what if''s,"they could never compare to the countless times a day that I count my blessings and realize the miracles I have seen in the "what IS" in my life. I understand how incredibly blessed we are. Kaidence is here because of an AMAZING family, a darling little boy and a loving Heavenly Father that knows her plan in life.

Anyhow, today was a long day at the hospital. It started out with labs at 8:15, ENT at 11:45 and then cardiology at 2:00. We made it back home around 5:00. K's ENT appointment went well. They scoped her today (sent a camera up her nose and down her throat) to get a look at her vocal chords. I explained to her earlier what was going to happen and she was such an angel. Yes, she cried as they were scoping her, but that was it. God has defiantly blessed this little girl with a very unique look on life and patience.

The verdict is that K would greatly benefit from the vocal chord repair. It has only been done on 20-50 kiddos (max) in the US and Dr. Smith says that he has done at least half of them. They will take a nerve from her neck and thread it through her vocal chord. This will not cause the vocal chord to start working again, but it does give it some physical tone and bulk (like with muscles) so the left vocal chord will not have to compensate so much. Currently, Kaidence's airway does not completely close when it should. This is why I am so paranoid about her choking or aspirating and this is why she does it so often. Having her vocal chord repaired will help her voice and cough be stronger, helps with her O2, help her swallow easier and protect her airway when eating.

Dr Smith feels that this will be successful with Kaidence and we are excited to get it done. You never want your child to have to have surgery, but she needs to go to school and play with friends without having her mommy there to do the Heimlich if something happens. She knows that today's ENT appointment was to help her voice so that she can sing like the Little Mermaid, with that explanation she was content. Her surgery will take place in June.

Next was cardiology. I was SO nervous for today's appointment. Once again I think it was a combination of the pregnancy hormones, Kaidence's recent headaches and the fact the we hadn't been to cardiology for 3 WHOLE MONTHS. I was so nervous for the echo and today it seemed to take longer than usual. When they left to check the pictures they were gone for awhile and then came back saying they needed a couple more. This usually happens to us if something looks off. Thankfully her echo looked great and we don't have to go back for another 3 months!

Kaidence's white count is a little high, but we think that is just from a viral infection . We will keep a close eye on that and her headaches. Cardiology was not thrilled with Kaidence's recent weight loss, which I was prepared to hear about. I explained to them that she was slowly gaining, but then Kaidence needed to be like a normal child. That means GOOD EATING HABITS. We know that she CAN eat, therefore she needs to learn that she cannot have Instant Breakfast for every meal with ice cream and potato chips. What parent would think that was ok for long term? So we have had to pull back and broaden her horizon with 'real food'. This is starting to come along and hopefully her weight will pick back up. She will eat a half of a sandwich at a time, or a whole hot dog without the bun (OK, I know that a hotdog is not 'real food', but have you seen the calories in them?). Oh and does eating ketchup count? She would drink it if I let her. So eating is still our goal and honestly may always be with her.

Kaidence, has started her training so that she can get employment at PCMC in the future. Whether it be in the lab trying to take her own blood, in the Dr's office taking her own BP and temperature or in the echo placing all of her EKG stickers and spreading KY jelly all over her chest with the wand. Watch out and fear for your jobs.....she is ready.

Today during her echo she was so cute. As they were taking ultrasound pictures of her heart, they turned on the volume so you could hear her heart beat. As proud as could be she turned her head quickly to Belle doing the ultrasound and said "that's my babies heart beat in my tummy." The rest of the ultrasound she kept pointing to the screen and saying "see my baby" as she rubbed her belly button. Yes, she has been to my ultrasounds and as always.....there is never a dull moment with Kaidence.

For being at the hospital today for over 6 hours you would think that Miss K was ready to go home. Nope, not the case. In fact she spent the majority of her appointment hanging out with the MA's at their desk while I sat in the room and chatted with the transplant team. I kept telling her that she needed to come back in the room, but they insisted that she was fine to hang out with them. And when it was time to go home.......she cried and I had to carry her out of cardiology. She may not have been ready to leave, but I sure as heck was.

So that sums up the day and gets things up to speed with Kaidence. Thanks for checking in and have a good one!!!!

.....IT REALLY DOES HAPPEN

Is it really happening? I keep asking myself, pinching myself. KAIDENCE is EATING and taking all of her MEDS by MOUTH!!!!!

Since July 2007 when Kaidence got the virus that attacked her heart and put her into heart failure see has been tube fed. During the many months she spent in the hospital she was in a medical coma and therefore tube fed into her intestines to prevent throwing up and aspirating while intubated. When she was transplanted, we found that she had to relearn how to swallow and everything else because she had been intubated so long. We took her home with suction and suctioned her every couple of hours. We also learned that she had damage done from the lengthy intubation period and that her vocal chord had become paralyzed, therefore she could not cough and protect her airway.

Months after transplant we pulled kaidence's tube from the intestines into the stomach and she started getting food in her tummy for the first time in a VERY long time. At that point I thought the whole feeding thing would be a breeze. Who doesn't love to eat????? I was so wrong. We knew we were once again into for the long haul and so that same summer she got her g-tube - it was the greatest thing ever!!!! Kaidence was throwing up 5-6 times a day around the clock. Oh, the smell of thrown up vanilla pediasure! Her stomach was not stretched. Needless to say many of you moms know that struggle from this point on. The laying in bed at night and thinking of how you can run feeds at some magical rate to keep your kiddo from puking. How you can quickly put weight on your kiddo before the next cardiology appointment.

After countless hours of feeding therapy, wasted baby food, doing the Heimlich, chipmunk cheeks full of food that she would spit everywhere 20 minutes later and many tears of frustration...........it has happened. It started when I would tell her that if she chose to not eat her food that I would have to feed her through her g-tube. That was all it took, she would say "no g-tube" and finish every time. I have waited on posting because I am afraid I will jinx us. Suddenly Kaidence is an eating machine. She is constantly hungry for anything and everything. I find myself just starring at her. I cannot believe my eyes. For example last night I gave her all the left over mashed potato's and gravy knowing that she would never eat it all, but wanting to get rid of the left overs. She ate every bit of it. Then later that night we went to the Artic Circle for ice cream. I almost got her a kiddie cone, but then knew that she would want the same as her brothers. It was a big ice cream cone so I figured I would have some of hers. Not so, she ate everything....including the cone. Then she proceeded to tell me that she wanted a cheeseburger. What?????? So I order her a cheeseburger and had her split it with camden. She ate every last bit of it.

With her meds we started by flavoring her blood pressure medication and she loved it. So we then went to the others. Now she is taking all of her medications by mouth as well. Is it time to say goodbye to the g-tube? Possibly, but I m too afraid. It comes in much to handy when she gets sick. I plan on keeping it for awhile just to be safe. Also I want her to have it for a vocal chord surgery that will hopefully be coming up in the next couple of months. I am sure that will be pretty rough on her and we will need a way to get her meds and food during recovery. I figure, if you have it you may as well use it.

As of right now I have a garage full of Nutren Jr Vanilla. It does not have the added fiber. I may also have some cans of Duocal. I am not getting rid of all of it, just in case. However, as the expiration dates get closer I will be getting rid of it. I have some that I do need to get rid of, if you are interested in it, you may have it. Just let me know!