Thursday, May 20, 2010

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!!!!

5 comments:

Michelle said...

Why am I crying... I'm not pregnant. Just happy for good news. Yeah for you and Kaidence! Seriously, I don't know if I could handle it if they asked for more pictures after an echo. I would be so scared all over again. You have every right to be Paranoid. I love that Miss K loves her cardiology appointments. I love that that we have such great doctors, nurses, (everyone) there. It makes the journey a little easier and at times... enjoyable.

Thanks for you post. I've been thinking about you guys. Take Care and see you soon!

Michelle

ang said...

I'm so glad she's doing so well. Hope you are feeling well too. The vocal chord thing sounds kinda scary, but I bet it will all turn out just fine. How many weeks are you?

Jackie said...

I was really glad to finally see a post lol I've been waiting:) But I truly can Relate to asking all the questions sense our girls BOTH had the same thing I've often wondered if it Really is a Gene too that Ryan and I have but the doctors believe like Ms.K that it too was Viral but I ask Myself the SAME questions all the time and wonder and worry about future children.
If you ever Need to vent always know that I'm here and ALWAYS thinking of you and the family and I would LOVE to see Preggo Pic's soon.
Love, Jackie

Debbie said...

What a little trouper K is. I can imagine that she is a little chatter box with all of the people at the hospital. I hope and pray that this surgery does the trick for her vocal chords. I can wait to hear her sing like little mermaid and sing her primary songs.
I can only imagine that you feel some anxiety with your pregnancy, but I also know that the Lord will continue to bless you and that this little baby will be healthy, normal and will be such a big blessing to your family. It's been awhile since we have had any new babies in the family. Can't wait for you and Shalyse have your little ones here. When I was with you mom on Tues. we talked about having a girls night together. I hope that we can do it soon. Love to you all, Aunt Deb

Stacy said...

You know, I thought of you several times during our visits to the hospital. I got only a small glimpse of what you deal with. We're headed back tomorrow to change the bandage. But you are right, kids are amazingly tough. She has never acted like she's in pain and she's running all over the place. Thank you for your thoughts. It means a lot coming from someone who knows the trial of watching their child suffer. Good luck with your pregnancy. I hope your feelings of anxiety can pass. You're amazing!