DADDY GRADUATED!!!!

It's official, my hubby GRADUATED with his degree. Its been a long journey with everything these last few years but you stuck with it and now ITS DONE!!!!!!!!!!!!!!!!!!!!!!!!!! Most of all, I am PROUD of you and I LOVE YOU!!!

* Kaidence is doing GREAT!!!!!! Holy cow, I cant keep this girl fed. She is an eating machine. I must admit that I am not use to feeding her so much. Tonight at dinner she ate more meat than anyone at the table. She LOVES meat!

I have had many people think that Kaidence must have had her surgery because her voice is noticeably louder and much clearer. It is still softer when compared to other children, but for her it's a major improvement. We feel so blessed by the fact that her vocal chords are now healed and all the concerns that we had are starting to resolve themselves because of this. What a blessing.

Kaidence just finished her swimming lessons. She loves the water and loved going everyday. She also got her first tan line despite all of my best efforts to slather her. Everyone needs some Vit D, right? Sunscreen is part of our daily routine. Due to the fact that she is on immunosuppression drugs, she is at a higher risk for cancers. Skin cancers being one of the big ones. So therefore we have been instructed by her docs to keep her covered and we do. At least she hasn't burned. It has protected her that much. People often comment on how pale she is, I just tell them that she's my little vampire. After all, vampires are 'the thing' right now.

Some History on her vocal chords

Kaidence was SUPER grumpy last night coming out of the anesthesia, WOW! She was very upset that they put her IV in her foot and not her hand. The moods swings were a little more than I had seen with the versed wearing off in the past. However, awhile after we got her home she seemed to click back into her normal, sweet self. She was a hungry stinker and had 2 bowls of Captain Crunch and some cheese (and she wanted a taste of Coke...no idea where that comes from). So much for slowly getting in to her regular diet. But she did notice that she didn't have an owie on her neck.

So a little history leading up to last nights events for a better understanding. Back in 2007 they started scoping Kaidence when she was in the CICU trying to figure out breathing issues, digestive issues etc. After her transplant they once again looked closely at things because she could not clear her own secretions. At one point a trache was discussed, but very briefly. It was determined during these procedures that Kaidences right vocal chord was indeed paralyzed. He then gave us a year for some slight possible recovery of it, but after that no improvement would take place. So when we took her home post transplant Kaidence was not allowed ANYTHING by mouth, because she could not swallow. When you have a paralyzed vocal chord it affects, your O2, swallowing (your airway never is completely closed) and speech. All of which Kaidence has really struggled with. Months into being home in 2008 Kaidence would undergo all the fancy swallow studies to see if it was safe for her to eat. All the while it being reconfirmed that the vocal chord on the right was paralyzed still. Last summer Kaidence had her tonsils and adenoids removed by a different doc. At that time he also noticed the problem and then referred us on to this other doc for the repair of the chord.

About 2 months ago we took K in to see this doctor. He is the same one that saw her all those times in the CICU and did many of the swallow studies for us. At that point in time I explained that I felt her vocal chord was better because Kaidence now has a faint cry and voice verses nothing at all before. I was hopeful, but then he scoped her that same day. He then told me that her vocal chord was still paralyzed and after reviewing records, it was just as bad as it was originally. It had made NO recovery whatsoever. At this point it was so bad that it was laying off to the side and not in the place it should have been. Your vocal chords make a "V" shape when open. That was when we knew that the surgery was needed to repair this.

We had high hopes that this would fix all of our current issues with Kaidence and so last night when we found out it was no longer the case, I was not too sure what to think. Was this just some freakish misunderstanding for the last 3 years and after all the scopes that confirmed this problem? Or was this another answer to prayers and evidence of the power of the priesthood? Looking back at her blessing last evening before going in, I prefer to believe it was the last situation.

Like I said last night, the doctor was shocked himself. He was not expecting this situation. Both vocal chords were where they should be and both vocal chords moving as she was breathing on her own. Both of which have never been seen before on Kaidence. So needless to say, we are anxious to look further into this situation. We count our blessing that he double checked before he cut. We will meet with this doc and K's GI doc together to discuss what to do next. Likely she will definitely have the 'floppy things' surgically removed. It is also very likely they will want a full GI scope on her and many other test to confirm if this is truly due to reflux. She was checked before to help determine if a Nissen was needed with her G-tube, but it was then determined unnecessary. He does not think that getting the reflux under control will make much difference with the choking and soft voice, but as we know....anything is possible.

So we are done sitting around in the house and letting our summer pass us by. We start swimming lessons next week and look forward to the vacation that was canceled for all of this surgery stuff. I am ready and I am pretty sure my kiddos are too. Thanks for always sending love and prayers our way!

NOT WHAT WE THOUGHT!

As you all know, Miss K does not follow the rules.......she makes her own. A little over an hour into surgery the doc came out and explained that he no longer thinks that K's vocal chords are paralyzed. He seemed very surprised. However he did find some weird swelling and floppy things in her throat consistent with acid reflux. The floppy things can be surgically removed, however not tonight. We need to do some investigating into whether this is really the case. Removing the 'floppy things' will help improve her sleep apnea and could possibly help her sleep apnea. He however does NOT seem to think that it will help her choking issues and her very soft voice. Bummer! That part has me concerned.

The plan, we will go home tonight once the anesthesia wear off and then meet with the surgeon and her GI doctor to get a plan in place. Post transplant she use to vomit 8-10 times daily, but has not for a long time. We had to take her off reflux meds because it caused her white count to drop dangerously low. We haven't seen any problems with reflux, but I guess you never know.

I am tired, smell like pee and need to go be with my baby girl. I wonder if she will be shocked by how easy her surgery was. Do you think she will be sad that she still doesn't have her Mermaid voice?

In Surgery!

They took Miss K in around 6:15 this evening. The doc said that it could take anywhere from 2-4 hours depending on how small the nerves are in her neck. I have a feeling that they will be pretty small, so I am not expecting anything too soon.

Kaidence did amazingly well today without being able to eat. She is such a sweetheart. She never complained, cried or threw a fit. She is such a good girl. Before surgery Mike and I took her to see Toy Story 3. She loved the movie and then we drove straight to the hospital.

We checked in and then the nurse gave her some versed, but nobody came to take Kaidence into surgery. Therefore, my sweet little Kaidence peed all over my lap. I think she tried telling me, but her speech was so slurred it was hard to understand anything. She had that oooopps look on her face, but thats ok. Just looks like my water broke and I now smell like urine.

Thanks for checking in on K, we will keep you posted if we hear anything.

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.