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!
Danny's Birthday
4 weeks ago
1 comments:
So glad everything went well!!! Can't wait for Mason to have that kind of appetite!!! Enjoy the rest of your summer!
Loves and Hugs,
Mason and Mommy
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