Biliary drain out...

Oh man, what a past 48 hours. Yesterday I came to Children's for Kaelyn's labs and clinic appointment. We dropped off her labs and were heading to the car to meet Wade for lunch to pass the few hours we had until her clinic appointment. I was taking her out of her stroller and noticed her tube was stuck on one of the clips in the stroller, so I unhooked it. I pulled her out of the stroller and set her in her carseat. I turned around to put the stroller away and on the seat was her biliary drain! I quickley turned back to Kaelyn and asked her frantically if she was alright, she said yeah mommy, it didn't hurt. It didn't hurt! I had accidentally pulled out an 18 inch long drain from her intestines and liver and she said it didn't hurt. I was relieved, but knew that back into the hospital we had to go. I called her transplant coordinator and she came and took a look at it and dressed it becuase if was a little leaky. She also called Dr. Horslen and he thought that it could wait until he looked at it in clinic in a couple of hours. So off we went to meet Wade, again, for lunch. During lunch Kaelyn started getting the chills and so we drove back into the hospital a little early. She got into clinic and was starting to fever. So we took blook cultures and she was admitted. The rest of the day was pretty frightening. Her blood pressure was low and her heart rate and temperature were high. She was given tylonal and a couple of boluses of fluids plus antibiotics. The nurses took her blood pressure every hour through the night and finally she started to stabilize. This morning she had an ultrasound to see how the bile ducts looked and to make sure there was not fluid collections anywhere. No fluid, but her ducts looked dialated. So back into IR to get a new drain placed. Luckily they old tract was still open so they were able to slip the new drain in fairly easily. And the end of the drama is, Kaelyn is doing much better sitting in her bed painting her fingers and hands with finger paints with a new drain in place. I felt really bad about the whole thing, but am really relieved that she is better now. Her cultures did come back positive this morning, so we will be in the hospital for a few more days. I am hoping that by Sunday we will be able to go home, but we will see.

Love to all!

Angie

Happy Girl...

So we were able to go home over the weekend and Kaelyn is doing really well. She is doing her 'homework' right now, coloring in her strawberry shortcake coloring book with a pink marker. Jacob has been bringing home a little more homework lately and Kaelyn has loved pretending to be a big 1st grader just like her brother! It has been so fun! She is home on IV antibiotics, but it is much better than inpatient! I would rather lose a little sleep at home with my family than be in the hospital (and so would Kaelyn, she always says she is so excited to be together as a family!).

Love to all!

Angie

Not home...

Well, the tube change did not go as planned. She needed a new drain placed in the opposite side of the liver. They were able to take out the first one completely though. It looks like that area is healed and open. But the other spot is new and needs to be drained and dilated for a while. I bumped into Dr. Reyes in the hall yesterday and he told me that this liver is good. He said that "nothing is going to happen to this liver". He said that we just need to fix this narrowing and things should be fine...she may have to have a second drain placed just because of the positioning of this area, but there is no evidence of damage in any other part of the liver. That was the best news! He thinks that this is just a temporary thing and once we get it cleared her liver should be fine! I was so happy when he said this. "Nothing is going to happen to this liver"...music to my heart.

Unfortunately this tube placement was not so easy on Kaelyn. We are still in the hospital two days later. She got a blood infection from the placment of the drain and started to get fevers and chills. Luckily we were here and they started antibiotics right away, so no sepsis....thank heavens. But because of the postitive blood cultures we are still here. Hopefully tomorrow all of the lab results will be back on what antibiotics are best for this bug and we will be able to go home with IV meds. Atleast she is feeling much better.

Love to all!

Angie

In Cholangiogram

Kaelyn is currently in surgery to have her cholangiogram and tube exchange. It should be fairly uncomplicated since we have done this a million times. So far so good.

I wanted to share a photo of Kaelyn that the hospital is going to use for a national campaign. This was selected to be on display along with 49 others from several Children’s hospitals around the country. This exhibit will be on display in San Francisco at the NACHRI (National Association of Children's Hospitals and Related Institutions - now that's a mouth full!)spring conference from March 14-17th. The exhibit will then go to Washington DC and be on display on Capitol Hill sometime in June. Pretty cool, huh! She sure has changed.

Well, we should be home tonight as long as all goes well. Love to you all!

Angie

Kaelyn home

We got to go home on Saturday. There was no growth in her blood cultures, so we only have to do oral antibiotics at home, yippee! She is doing really good. She is going into the hospital tomorrow to have a cholangiogram and drain change. Hopefully that will take care of any stray bugs that may be in her system. We should be able to go home after the procedure.

Jacob went to his first sleep over party this weekend. He had a great time, he said he never went to sleep (though the mom of the friend said that everyone was asleep by about 10:30 pm). He was pretty tired the next day though, but not too grumpy. I can't believe how much he has grown! He has his first loose tooth too! What a big kid!

I love my kids...they are such a joy to me and bring so much light to my life. What a miracle they both are.

Love,

Angie