"Bob" is gone!

Today Kaelyn's JP drain, known as Bob, was taken out (finally!). She has had this drain for four months. So it is really quite a relief to get rid of Bob, as friendly as we tried to make him, he was still a pain! She had an ultrasound this morning to check if there was any fluid around the liver to give reason to keep Bob around. Thank Heaven there was none! Yippee!!! Bye, bye Bob!

We had a wonderful Christmas. It was hospital free, my christmas wish. The presents were so much fun to watch the kids open! They had a blast (and so did Wade and I). What a joyous, happy day. I am so thankful for all of the many wonderful blessings, friendships and family that we have enjoyed during the past year. Thank you all for your support and love, it means everything to me.

I have to share a fun experience that we had last night. We took the kids to McDonalds for a end of the winter break dinner. Afterwards Jacob started playing inthe play place. Now, this play place involves a lot of climbing up plastic tubs and sliding down large slides. Jacob, of course, was all over it. Kaelyn really wanted to play too. The first time she climbed up the first two steps and just started bawling. So I went and got her and she said that she didn't want to play. But she kept looking at the other kids having fun. Both Wade and I were feeling really bad that she was not able to do what other three years were doing. But, without any encouragement from us she tried again...she made it to the inside of the first tube and came out saying she didn't want to do it. So Wade said that he would follow her up and catch her if she slipped. She said okay and went up with little help and came down the slide just giggling and grinning! She did that a couple of more times with Wade behind her (yes we broke the rules, he is over 12). Jacob was being so helpful too, he followed her up a couple of times - what a good big brother. Finally she said she wanted to do it all by herself! And she did! It was the best moment seeing her realize that she can do it. It built her confidence so much! It just makes me want to cry with joy! This morning she woke up and said, "Mom - I'm proud of myself for climbing in McDonald's". Such a sweet moment.

Love to all!

Ang

Kaelyn home...

So Kaelyn was able to come home on Sunday only from mine and Wade's constant assurance to the doctors that we could do the exact care at home as they were doing at the hospital. They wanted us to stay until the susceptibilities on the bacteria came back. They already had three back and were waiting on one. She was on two antibiotics that cover just about anything. So we saw no reason to make her stay since I can do the IV antibiotics at home. They almost didn't let us go, Wade finally packed everything up on Kaelyn's stroller and started walking around the unit! It worked, because he got to bring Kaelyn home not too long after. I was so happy! We would have had to wait until Tuesday to bring her home otherwise. All of her liver numbers are great. We don't have to go back into the hospital until the beginning of January! Christmas break!!!!

Everyone have a wonderful holiday and remember the birth of our Savior in your own way...

Love,

Angie

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...