Thursday, November 26, 2009


Over the river and through the woods to Kaidence's house we go! We are out of here!!!! Her CRP is still not back,but her white count has dropped dramatically. We will be back on Saturday for labs. Kaidence did very well last night and today is into everything. She seems to feel so much better and is back to her spunky self.

I have got to get packed up and out of here because I have some baking to get done! I will update another post later.

We are so grateful to get to go home today. We have been given so much. Like always prayer of gratitude and peace is in our heart this day for the sweet family that gave Kaidence her second chance at life. Happy Thanksgiving to you all!

Wednesday, November 25, 2009


Kaidence looks so much better tonight. In fact, she is playing in the closet in her room. She is going pee in the potty again and has taken a little milk this afternoon. The one thing my daughter wants to eat today are Salt and Vinegar Potato chips, her favorite. Can you believe she picked that over M&M's?

Kaidence got another chest x-ray this afternoon and it looks worse than it did yesterday. They were expecting this because of how dehydrated she was yesterday. But, today now that she is more hydrated, she has more fluid in her lungs. Her prograf is still high this evening and so we are holding another dose to try to drop it even more.

The concern this evening is that her CRP (body's inflammation response) is 21. MUCH too HIGH, however we have had much higher in the past. If this number does not decrease by morning, we will not be home for Thanksgiving and she will be restarted on IV antibiotics. Today we lost 3 IV's and no longer have access for IV meds. Because of this they have started her on a very heavy oral antibiotic dose.

So all in all, our goal is to get that CRP down and get home. Missing Thanksgiving does not diminish what the holiday is all about. It is about Family, Giving Thanks and Being Grateful and I have so much to be Thankful for. So Happy Thanksgiving to you all and know that you are one of those things that I give Thanks for.


Kaidence had a good night. In fact, I think it was the best night that we have both had since last Thursday. That says a lot for hospital sleep. This morning she still is not producing much urine for the amount of fluids that she has been given, however that seems to be improving slowly. Her numbers for kidney function look much better today and will hopefully continue that way. That is a BIG relief for us. Also, her white count is down from 22 to 18 this morning, so the antibiotics are doing there job and hopefully it will be back to normal soon.

Kaidence held down some feeds last night and this morning wanted some yogurt. Her oral aversions have come back, but always do when she has been sick. It is almost as though she has to learn to trust herself swallowing again. She wants to eat the food, but is too afraid to swallow it. She looks so much better today. She is sitting up and has taken over the rocking chair and food tray in the room. She insist that the food tray stays in front of her, like a sense of Independence being able to feed herself when wanted.

Our plan for today includes playing a little hospital BINGO, getting a chest x-ray and waiting for our blood culture results. Thanks for all of your prayers. If things continue well, we may make it home just in time for dinner tomorrow. I will post a little later today.

Tuesday, November 24, 2009


Well, I am posting this from the "house upon the hill". Kaidence has been sick since Saturday with fevers, headache, cough and vomiting. I was told that we would not worry too much since she already had swine flu and should not get it again, BUT surprise She has H1N1 AGAIN and Pneumonia. The VRP panel the we had done on Sunday night came back negative for the flu, but then as I was siting in the ER today they informed me that it had been sent away and came back positive.

So kaidence's White count is 22 (not good for the immunosuppressed). Also her kidney numbers were a mess, we are hoping only because of dehydration. Her Prograf level keeps increasing even though we are trying to decrease it (it always increases when kaidence gets sick). She is almost 2 years post transplant and so they like her levels between 5 and 8. Today they were 18. This can also add to the nausea and headaches. I haven't slept since Thursday night and am feeling it a little tonight. Last night was the roughest, I think I worried and prayed for a wet diaper all night. The moment Kaidence would get 10cc's in her tummy, it was back up within a minute. I called cardiology this morning at 5 AM and left a message for the transplant coordinator to call me first thing. I wanted to bring her in for fluids and labs. I am so glad that I did.

We met with a doctor from 'Infectious Disease' that knows Kaidence all to well. He explained that when a immunosuppressed person gets H1N1 they get the initial virus for about 3 days and then it quickly clears, which Kaidence's did. They do well for a awhile and then 2-4 weeks after the initial infection they get sick again. This time usually with a bacteria infection like pneumonia as a secondary infection in addition to the H1N1 symptoms again. They aren't sure if when they get the second round of the H1N1 if the virus is alive or dead. The test only shows that it is positive for the H1N1 DNA. Reports seem to show that those who are immunosuppressed can shed the virus up to 21 days. That is a couple of weeks longer than those with a healthy immune system. We got a good laugh, because for once Kaidence actually did something that followed what they call "a text book case". She is usually writing her own book.

Anyhow, it looks as though I may get to partake of yet another lovely Thanksgiving Dinner here at the hospital. But hey, the Rainbow Cafe throws in free dessert and drink as and added bonus for Thanksgiving.

Tomorrow we will take more labs and hope that her kidney function is recovering and that she can keep things down. She is still very dehydrated this evening. They currently started Tamiflu again as well as two antibiotics for her pneumonia in her left lung.

We are heading to bed and praying that tomorrow brings much improvement.

Monday, November 23, 2009


Today was the day for Kaidence's MRI. We weren't too sure that we would make the appointment anyhow because Kaidence has been sick again since Saturday with fevers, coughs and vomiting. However, they wanted it done anyhow. It turns out that she has to go back in to place a stint in her LPA. I am bummed that we just didn't do it on Thursday, but it is better to know exactly what we are looking at and if it's was really needed. Dr. Gray said that it is a pretty tricky place to place a stint, because of where the kink is and its angle. It turns out that her right lung gets about 70% of the blood and the left lung is getting about 30%. This next time I am not so sure that Kaidence will be as cooperative. She knows what's going on and is a little unhappy about her bruised groin. We are hoping to do that around the 2nd week in December. I am nervous all over again.

Also, I am soooooo HAPPY to report that Kaidence's arm has regained all of its function. I am so relieved. What a blessing. Thursday night when her arm was not working at all she went to get off the couch but fell face first and got a bloody nose because her arm could not hold her. It would drag as she walked, but now looks as though nothing has happened.

Anyhow, that is our update. Thanks for checking in on our little family and Miss K.