No Rejection, Baffeled Doctors and Going Home

*THIS POST IS FROM YESTERDAY. COULDN'T POST, BLOGGER WAS DOWN*

Well once again Kaidence has the doctors a little baffled as well as her parents. Despite the echo and EKG her heart biopsy looks good. Good enough that we are out of here. The dr's said they just aren't sure what to watch for on her. Heart rate seems the safest thing to watch. She just walks around with rejection symptoms and isn't necessarily in rejection. Her echo today still looked the same because that valve is worse but her heart and body seem to be handling it just fine. Cardiology will speak with the cardio surgeon and discuss at what point that heart valve will need replacing. Likely, that will not be for years. The good thing is that now cardio knows that if her echo looks this way that her pressure and body are handling it just fine. Sorta a new baseline.

Kaidence is a little grumpy from all the steroids they have given her thinking she was in rejection and from the drugs today but that's ok because we. are. outta. here.

Such relief, so much gratitude......Thank You for the prayers

Cath Lab.....and done.

I woke up this morning with the hospital tummy......no more explanation needed.

Kaidence is in cath lab. She went in like she was going to a party. I will post the pics soon. She left on time and we are super excited to know that Dr. P is her drug doc this morning. He knows Miss K very well and I totally trust him. Dr. D is doing her heart cath today....So it should be a good one. We may not be making it for our out of town getaway to the Homestead in Midway. We were supposed to leave today at noon........oh well. Thats not imprtant.

***UDATE*** I didn't even get to finish the post and my pager went off. Kaidence is all done. Her numbers look good, we don't have the biopsy results yet and will not until this afternoon. Her pressures are good and so we count our blessings for what we do know and hold our breath for the rest. She is back in her room and already had a pink slushy and a thing of milk. Now she wants food but is still pretty loopy.

Sorry I wasn't a very good blogger today. Everything moved so darn fast that I didn't have time to really update. I will post again when I talk to cardiology. Thank You for remembering my Kaidence in your prayers.

Rejection...again?

Seriously? Was it not a year ago to the date that Kaidence was admitted for rejection? Well yes it was and guess where we are tonight.....yep, and for the same thing. Next year our family will be skipping this week on our calendar.

Today was a normal clinic visit and she looks great, but her echo didn't. Her heart valve is leaking more, her EKG showed low voltage. Both signs of rejection. Her BNP is a little high but not as bad as last year.

The plan is to do another heart biopsy at 7:30 AM tomorrow. This will let us know if she has rejection, what types and how bad. We don't think it will be as bad as last year. I pray it is not, I keep recalling her suddenly being so sick, all the panic from the doctors and nurses and thinking I was losing her. I don't want to be told that I need to go and talk with my daughter by her bedside in a moment that they would normally kick a parent out of the room because she was so sick. However, I am forever grateful that they gave me that opportunity....just in case.

The other thing that this heart issue could be from is a her leaky tricuspid valve. Remember the valve that was damaged a few years back? Well, it's been getting worse and may need replacing sooner than later. We may know more info on that tomorrow as well. So for tonight we wait, prayand count our blessings. Tonight she is getting IV steroids and we will pray that tomorrow goes smoothly.

Thank You for all your love and prayers. If you need us we are in room 3084 at the house on the hill.

Good Night

Wow, last night was a great night! The original plan was to go home after surgery but when Kaidence stared having naughty O2 sats the plan changed. They then talked about her spending the night in post op to be watched over. Well, post op decided that they didn't want to take her because she was requiring more O2 than they were comfortable with. She did sound pretty darn crappy after the surgery. There is NO WAY I would have taken her home. Therefore, she was admitted to the floor. We happen to be neighbors with our heart buddy Mason. It's much funner to be neighbors up here than down in the CICU like the olden days.

Last night she did great. She really sounds good now and has perked up. Her cousin RyRy came to see her and she was so excited. They sat in her fancy bed together, made funny faces, ate slushies and got their toe nails painted. Kaidence LOVED having the visit!

She slept great last night. She was not a fan of the high flow O2. I think her throat must be so sore. She did very well without the oxygen. This is so exciting to me!!! Maybe we WILL get off all that dang oxygen and I could get rid of all the equipment! So far, it looks promising.

This morning, She woke up and said "good morning mom." She ate a little breakfast but not much. She looks pretty wasted at the moment. Her eyes have dark circles under them and her face is a little swollen. She just needs a really good nap....I wouldn't mind one too.

Hopefully we will come home later today when her probe study is all done. Thanks for checking in!

DONE!!!

DONE!!!!!! Two of the docs came out and gave report. Kaidence did great. We are still waiting to see her. GI's report was that she she does have irritation. They won't know the severity until we do the 24 hour study. The nasal tube was placed for that in the OR. It has a thing attached and I have to push different buttons every time she sits up, lays down, eats, stops eating etc. I may have a busy night! They will have biopsy results on Friday. Everything else with her stomach and intestine look good.

ENT Report- It turns out that the right vocal chord that we had always assumed to be the problem is not as bad as the left vocal chord. Kaidence's left vocal chord is paralyzed. This took place during her heart transplant. There is a nerve that goes around the heart and wraps around the Aorta. During transplant it was cut or damaged. Therefore, the vocal chord was paralyzed. He injected some plumping stuff into the vocal chord in hopes that it will bulk it up and give her voice some volume. It will also make her cough stronger to help protect her airway. This plumping stuff will wear off over time. If it works...we will do another procedure and thread a new nerve into the left vocal chord that is paralyzed. The right vocal chord has had some damage too it as well, but still is working....not perfectly, but working. He also took the extra tissue away from the left side of the airway.

Plan is to watch her for the next 24 hours. She will need some breathing treatments to help with the airway swelling. I am so glad they are not sending us home tonight. I would be a mess with worry. Mike just went back to see her. Here are some pics from earlier today. Thanks for your prayers. I will try to blog later but I may have my hands full.

Update #1- Halfway through surgery

Just got an update. They have taken biopsy pieces of her esophagus. They are placing the ph probe. They have looked at her vocal chords and will be injecting them with some plumping stuff. This may help her voice, but will not fix it. If this works, a surgery may be possible in the future to permanently fix the problem. They still need to cut away the extra tissue in her airway. So far things are going well (knocking on wood). Her vitals are great and she seems to be doing well. Keep the prayers coming. Thank You all!

Ready Get Set and GO........

UPDATE: Kaidence just went into surgery ( in her wagon). It will take about 3 hours. Please keep her and the doctors in your prayers......

Kaidence is so excited to be here today. She is spoiled rotten here and she knows it. All the hugs and kisses. She has her Mermaid nightgown ready for when she is all done with surgery. Also, I have nail polish for those little piggies of hers tonight. Might as well make it a 'girls night'. She will be staying the night. She is ready to get this done and she is starving. I already have a list of foods she wants to order after the surgery. Not sure she will feel like eating. We are forgoing the anxiety meds since they make her grumpy after surgery. She usually will walk herself to the OR without needing it. Her only request this time is a wagon ride. She already spotted one in the hall.

She was able to make a quick stop to the CICU to visit our friend Abby. I swear, those two girls look alike enough to be sisters. Abby is waiting for a new heart. Her blog link is on the right side of the blog under 'buddies at heart'. Her mom Michelle is amazing and I am so grateful that we were able to contact each other. It's been a blessing for me. Please pray for Kaidence friend Abby and her family.

Thanks for the prayers and fasting for Kaidence. I cannot imagine doing this without them. I will update when I hear anything!