Scans went well...

So Kaelyn's cholangiogram went well. It did show that the drainage tube was partially blocked internally and externally was completely scarred around the tube. So nut much bile was being placed into the intestinal area and more pressure was building within the liver. This is probably why the old leak broke open again to releive the pressure. That is why we had drainage coming into Bob like a damm broke. So, with the new biliary drain which is a size bigger and the ballooning the did in there, hopefully we can decompress this liver so no further damage can be done to the remaining bile ducts. They did say that the bile ducts did look a little more inflammed this time compared to last. Which is a worry to me, but if we can decompress this liver than maybe it will repair itself and not be anywhere as bad as her first transplanted liver.

She is still in the hospital too. She was supposed to come home today, but the docs noticed that a new bug was growing in her older cultures and needed to wait for the drug sensitivities to come back. We need her on the right drugs to get the bugs. Even though I think we could be home while all of this occured and they could me a phone call to tell me the sensitivies and then i go pick up the righ meds and vwala! It is done. But this is a weekend in the hospital we are talking about. Things don't get done until monday...But hopefully we can make it happen on Sunday.

We need the whole family home to feel whole. It's kindof crazy that way. Jacob is sick again and it seems like he always gets sick when I have to go to the hospital with Kaelyn for any length of stay. I don't know what to do about that. But I did come home tonight and made him chicken soup, played some Wii with him, read a book, hooked the humidifier in his room and gave him some good night time cold medicine. I hope it helps. I hope that I can make up for in one or two nights that he needed this whole week. It's always so hard to leave him even though he is taken care by the people whom I trust love and care for him as much as I do, but sometimes Mommy is what you need. I love that kid and want him to be able to have mommy time when he needs it, not scheduled around hospital visits. But I guess right now we do the best we can...My whole family had really enjoyed the last 6 weeks we had out of the hospital.. I think it has been really hard going back. Sorry for the rambling...sometimes my mind just needs a release and this is where I can get a lot of my thoughts out.

But Kaelyn should be home tomorrow and we can start another hospital break. Which is something to look forward to. And Christmas around the corner has caught me unprepared and running out of time to prepare. So this week is going to be the time when Santa fills his sleigh!

Love to all and Happy Christmas,

Angie

Kaelyn doing much better

So Kaelyn was transferred out of the ICU last night around 10 pm to the surgical unit. I was so glad that we didn't have to spend the night in the noisey bright ICU. She is doing really well today. We have been running around, playing and just having as much fun as you can in the hospital. She is going to have an ultrasound today and her biliary drain changed tomorrow. Her blood cultures did grow some positive bacteria, which was expected from the septic shock she went through yesterday. So we are just treating that with IV antiobotics. I'm hoping we get to go home by the weekend.


Love,

Angie

Kaelyn in ICU

Last night Kaelyn spiked a fever around 11 pm accompanied with horrible tummy pain. So we brought her into the ER. As always, by the time we got to the hospital her fever had gone down and she was feeling a little bit better. So we waited for labs to come back and decide what to do. Her liver numbers are all okay still, but her white cell count was fairly elevated and she had a band (immature cells that point to infection) count of 75% which is really high. So we were just about on our way to a room and the ER nurse wanted to do one more set of vitals (thank goodness). Kaelyn's blood pressure was really low, like 50/20 normal is around 110/80 for her. So we had the swarm of ER docs, nurses and PICU fellows in our room watching her for about 2 hours while they pumped her full of fluids and antibiotics and started a dopamine (blood pressure med) drip. Finally her pressures started to come up. She was transfered into the ICU. Right now she is doing so much better. She is totally off of the dopamine and her pressures are stable. She was in septic shock. Sound familiar? She went through this the very first time she had her biliary drain placed. Only that time was much more serious. But when they mentioned that this was what was happening my heart dropped. It was so scarry the first time. Thank heavens that it was not quite as serious this time because we caught it earlier.

She's sleeping right now and we will hopefully be transferred out of the ICU tomorrow. What a day...

CT scan results

Hip Hip Hurray!!! Kaelyn is still cancer free! We braved the snow storm that we had here and went into to Children's for her scan (I still have that Utah blood flowing through me - bring on the snow!). It went wonderfully well. She did not need anestesia which makes it so much easier on her. She is such a big girl. Her oncologist, Dr. Thomson was very pleased with the results. There are three areas in her lungs that they have been watching and all of them are either smaller or unchanged with means that they are scar tissue of some kind. Dr. Thomson also said that the greatest chance of recurrence is within the first year post chemo. And Kaelyn has just past her year mark with no sign of recurrence! There is always a chance of recurrence with Hepatoblastoma, but atleast it is less. I am just bursting! It is really very exciting. She only has to go get CT Scans every six months now and AFP's drawn every three (unless there are liver issues).

I love posting good news! Hope you all had a great Thanksgiving, we sure did.

Love,
Angie

Good news...

Kaelyn is doing so good! Her docs have given her the okay to start preschool! I think I will start her on Monday. She is so excited. It will be so good for her to do some normal three year old things and play with different kids. They also tapered down her prednisone (steroid) to every other day. Which is wonderful! The only issue that we have is with Bob, her JP drain. Dr. Healey thinks that maybe because we have had it to suction that there has been too much negetive pressure not allowing the little leak to heal. So, we have taken off the suction and will see what happens. So far, Bob is still draining but it will take time for the leak to heal.

Kaelyn does have a rountine CT scan and oncology clinic visit scheduled for the end of this month. We have to do this every three months. She also has a routine biliary drain change scheduled for the beginning of December. Hopefully all of this will lead up to a very uneventful, blissfully simple holiday season. If I don't post again before next week, everyone has a wonderful Thanksgiving!

Love,

Angie

PS: I finally posted some pics of the kids from halloween. The other is one that the hospital is using in one of there mailer add campains (my daughter, the super model!)