Cath Update #2

We still have not heard anymore. This 2-3 hour cath has just hit the 4 hour mark. I am starting to freak out a little. I keep thinking that maybe my pager is broken, even though I know it is not. I always thought as well when she was waiting for her heart. I am trying to keep myself busy, but my mind has a different agenda. I cant stop wondering what is going on and if everything has gone ok with the ballooning of the artery. I keep thinking that I should hear from them any moment. Just thought that I would update.

Update to cath #1

Kaidence's cardiologist just came by to let us know that Kaidence is dong well. They think that there is narrowing of the Left Pulmonary Artery (LPA). However, we have had this discussion before. In fact 6 months after tx, we sent Kaidence to the cath with the idea that a stint would be placed at that time. Dr. Cowley felt that it was just the angle of her artery and that blood flow was fine and therefore found no need to place the stint. Dr. Gray was wanting to place a stint after getting a look at things this morning. They will balloon her artery in the cath and see what happens. If things look stable at the point Kaidence's cardiologist wants to wait and do a MRI of her lungs and heart that will show the blood flow to both. If this looks bad, then we will go into another cath to have the stint placed. It would be one more cath, but better than having something placed that is not needed.

(FYI - a stint opens up the artery and allows more blood flow. If the artery goes without the appropriate amount of flow then the vessels of that artery will die off and cause serious problems).

She still is not finished and we are anxious to see her. Still keeping a prayer in our hearts.

WE MADE IT TO THE CATH LAB!!!!

We officially made it into the cath lab around 7:30. She woke up with a little cough this morning, but they feel that she sounds and looks pretty good. Kaidence was a little unsure of things, but she insisted on walking herself into the Cath lab and went and stood right next to the table. Everybody seemed surprised at how big she had gotten. She chose bubble gum for her flavor of sleepy juice, but was a little unsure as to why she didn't get a 'real' piece of gum. They let me stay in the room with her as they put her to sleep. I was able to help hold her and just talk with her as she drifted off to sleep. She only cried for a minute before she was snoring away.

They told us to expect 3 hours because they were doing a full cath on her. I don't ever recall her having a full cath since her initial 6 month post transplant. They will use both legs as access to a artery and a vein. They will take the biopsies and then inject dye into the coronary arteries to look for disease and narrowing. I am a little worried as to how the coronaries will look due to the fact that last cath she came back showing AMR antibodies. They seem to think that being positive for the AMR antibodies leads to a higher chance of disease of the arteries. Time will tell and I am trying to not worry over things I cannot control. Please keep my little lady in your prayers today. I will update again as soon as I get any info.

Cath Lab - take 3!

So about 4:30 this afternoon the cath lab called to cancel Kaidence's appointment for the 1st of December. They had another heart kiddo that needed the spot. I told them I understood because I am sure that we have caused others to reschedule in the past when Kaidence needed things done.

Well after trying to find another date to reschedule, she said that they could do her cath tomorrow morning. I asked her to double and triple check with same day surgery to be sure that they were really ok with it. She called and they told her that 4 weeks post H1N1 was only for those that had the illness severely enough to be hospitalized. So we are apparently good to go for the morning, first case.

Please keep Kaidence and the doctors in your prayers. I have been a little more paranoid about her airway holding up after the tonsil episode, but I think that was an isolated episode due to the swelling, cough and too much Lortab.

I am also worried about her heart valves after the other cath. Once you have one bad cath experience it seems to make you a little more paranoid for the others. I am sure that all will be well. She knows that she gets to go to the hospital in the morning. she just tilted her head and said "Oh no" in her soft, raspy voice. We look forward to checking this off our Holiday list of 'things to do'.

Thank You for your prayers. They bring so much comfort, peace and guidance.

CATH LAB = NO GO!

Ok, they once again canceled her cath. I want to just sit and cry (OK, I already have). They are too afraid to do her because she had H1N1. I understand the concern, but people you also have to go by the patients clinical status, not just a diagnosis of something that she had in the past. Kaidence has NO COUGH, NO RUNNY NOSE, NO FEVER...........NOTHING!!! SHE IS EVEN EATING! She has been well for a week now. I can't guarantee that she will be this healthy as the winter goes on. The ironic thing is that this would be the healthiest that Kaidence has EVER been for a heart cath. Cardiology even pleaded our case but the anesthesiologist said no way because she had the swine flu. I understand they are only trying to protect our children and I do appreciate that. It is just one of those black and white things without seeing any of the color in between. Next time we will request Chuck P as our anesthesiologist. So our date is being moved to December. I am really praying for no rejection so that we are not in the hospital again for Christmas or on strict house arrest Christmas Day.

Worse things have happened in life and my no means is this a huge deal. Just a big disappointment and a longer wait for the unknown. I am grateful that Kaidence IS so healthy. I just wish others would listen and know that I would NEVER even chance for a moment putting Kaidence in any danger.

Thanks for letting me vent!

GOODBYE H1N1.......IT WAS FUN GETTING TO KNOW YA!

The Swine Flu will hopefully not be seen at our home ever again. Kaidence is the only one that got the darn bug (knocking on wood of course). Monday was when it started, and quickly at that. Tuesday was another day full of vomiting, high fevers 103-104.7, shakes, coughing.....all the good stuff. Tuesday night was.....LOOOOOOONG to say the least. That was a rough night for her and seems to be when everything really peeked. Wednesday the vomiting decreased greatly and so did the fevers. When she got them they were still high, but she only had two that day (compared to non-stop the days before) and they were manageable with Tylenol for once. All of these days she just layed and cried, while pointing to her little forehead. It hurt. We returned to the Pediatrician's office Wednesday to check her lungs for pneumonia and they were very pleased with how well she had done. Everything sounded great. Wednesday afternoon was her last fever and she has not had one since. It took a couple of days past that to get over the headache and work her feeds back up to full, but we are getting there. Just as quickly as the illness came on, it left. But it sure did a good job of wiping her out. However, Kaidence is dancing all over the house today & asking for candy. This little thing is always dancing through the house. I am amazed that she did so well. I almost cried when the doctor told me she had H1N1. I think that getting the Tamiflu in her system so quickly after the fevers started played a huge part in that, even though it made her stomach sicker. Thank You for all you prayers, we know that plays the biggest role of all.

Hopefully we can all stay well and my cute little stinker boys will keep healthy. We still need the second doses of the H1N1 vaccine for all the kids, maybe next week if her cath goes well. Her cath has been rescheduled sooner than we thought possible, because of how quickly she got over her illness. It is for this Thursday morning. Wish us luck and please keep Kaidence in your prayers next Thursday!

H1N1...........IT FOUND US!!!

Yes, my fear has become a reality.............
Miss K has been diagnosed with HINI, yes the Swine Flu. How the heck she got this I have NO IDEA. We have someone that watches her every Sunday so that we can go to pat of church with the boys. We haven't been anywhere that she has not been in her stroller with her mask on and my poor boys change their shirts the moment they walk in the door from school and sanitize their hands. Oh well, I guess even with being so careful and all the Avagard that I carry with me you can't always protect them from everything. She has only had her first dose of the vaccine for the H1N1, the second dose is due this Saturday. Her symptoms came on very quickly (within an hour). I took her into her doctors office and they swabbed her and said that the test hadn't finished running but that it was already showing positive. She has a fever, head hurts, throat hurts (all determined by her pointing and crying). She has a cough and has been pretty nauseated. We put her on Tamiflu last night but that makes her tummy worse. She lays around a lot and does not have much energy at all. She looks pretty pale and has those bloodshot fever eyes. I feel bad that she feels so bad. I am having a hard time timing all her heart meds around the spells of nausea. If we can at least keep them in for 30 minutes then we are good to go. I have hard a hard time keeping her fever and body aches in check with only Tylenol, because she cant have the Ibuprofen. On a positive, note I have a little cuddle bug and I love it!

Needless to say that Kaidence's Yearly Heart Biopsy that was scheduled for this Friday has been canceled for a few weeks. Big sigh, you know how you build yourself up for it. I just wanted to get it over with before the Holiday's incase they did find rejection like last year. That is why we do it every November even though she was transplanted in December. If they do find rejection then we have to do a steroid taper and she once again becomes very immunosuppressed and cant be around anyone. I am hoping that when the Cath does happen, that all will be well so that we can spend the Holiday's with our family.

Maybe this is just how things are supposed to work out. I am just so happy that she has done so well and we have come so far. We have been blessed, I see it more and more everyday and I am so grateful for all that Heavenly Father has given us. I cannot help but feel so blessed and happy.
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SIDENOTE:
I am almost finished loading all of our summer pictures and will get a very looooong post in sometime soon. Also, I know that I have not yet posted about her Make A Wish party but I ended up passing 3 kidney stones that night and was in bed the whole week after sick. I will post about it soon, however pictures of my beautiful kidney stones will not be included, I know you are all sad about that one. And yes, it was worse than child birth without the epidural ( mine didn't work at all with K). And we will just leave it at that!

Thanks for checking in on us, we will keep you posted!