Tube change today

Kaelyn will be going in for a tube change and cholangiogram today. I am very happy that the docs actually listened to me and scheduled her. For some reason they are hesitant to change the drains unless she is in distress...I don't think that makes any sense. I want to avoid that, not wait for it. Needless to say, Wade and I are very frustrated with some of the doctors here (not all, we have met a few very nice docs). But the doc we see most is very hard to work with and she always seems to be out of town. We have been waiting for two months to hear what the long term plan is for Kaelyn and her biliary drain. And this doctor just, in our opinion, doesn't seem to see any urgency in figuring out a plan. Grrr!!! Of course, she is out of town this week, so no answers.

I'll stop complaining, now for the good news....after Kaelyn's tube change we get to go home! Yeah!

Angie

Bye, bye purple line....

Bittersweet as it is, Kaelyn's purple Power PIC is out. She had a fever on Friday night, late (of course) and so we headed into Primary around 2 am on Saturday morning. When we were in the ER trying to get labs, her central line (ie, purple line as Kaelyn called it) was leaking. Since she got this line in Seattle, 16 months ago, Primary does not have a repair kit for it. So, unfortunately or fortunately (I can't decide which one it is yet) we had to have it surgically removed today. The surgery went well, and pretty purple line is gone. What does this mean for Kaelyn? Well, she will have to get "poked" for all of her lab draws now and she will have to have an IV placed whenever she needs fluids or IV antibiotics. Ouch! But, it is one less conduit for bacteria to enter her body, which is a good thing. And one less foreign thing in her body to create infection. So, bittersweet. She will probably be inpatient for a few more days. She will probably have a cholangiogram and tube exchange while we are here. Her biliary drainage is smelly - usually a sign of infection.

But, regardless, she is doing very well. Playing with her horsies and watching Dora. Two of her most favorite activities...

Love all,

Angie

Clinic

On Monday Kaelyn had labs drawn and a transplant clinic appointment. Her liver labs are all elevated, hopefully it is just because she has a cold. We will go back in next monday for follow up labs. If they are better than all is well, if not - well- we will schedule a cholangiogram and possible liver biopsy to rule out rejection. My opinion is that the labs are elevated because of the cold and it is not rejection. So we will see on Monday how is goes.


She is doing better as of today with her cold so hopefully things will be fine on Monday.

Jacob started school this week - 2nd grade. He says that he loves it and his teacher is really nice. Whew!


Angie

New addition to blog

Okay - I finally got the photo gallery going. A friend of mine has this on her blog and I just love it, so I figured out how to put it on perryupdate. I hope you all enjoy the photos...I am going to be adding to it as I take pictures (cross my fingers!). You click on the actual photos and it takes you to Flickr's website. From there you can choose to view the photos in a slide show or one by one. I really like the slide show format. I have put a lot of pictures I took while we were at Yellowstone that are really fun. So Enjoy!

Other news...Kaelyn's WBC (white blood cell count) and ANC (absolute nutrophil count) is really low and we are not sure why. The docs have taken her off of her ciprofloxacin (antibiotic) to see if that will help her WBC's recover. I guess that is one of the side effects, though I thought antibiotics were supposed to boost your immune system, go figure. I am a little nervous taking her off of her cipro, I think that is why she has not had to be inpatient for over two months. But I also don't want her having a low WBC and catching every little bug that goes around, especially since school starts next week.

I have also started a little part time job. I clean a local resteraunt every morning for two hours before Wade goes to work. I really think that this will help bring down our debt to income ratio. Since our move, finances have been...well let's just say tight. This will bring a little extra to help out and actually, though it sounds tedious, it has been kindof fun! I am a little strange though! I feel like I am getting paid to listen to music and get exercise (that I desperately need). So, we go on!

Jacob is officially registered as a second grader as of today. He had to get an additional immunization that WA state didn't require. He was very brave though...such a good kid. He also becoming a fish as a result of his swimming lessons. He has two more of those and then school starts next week. Crazy!

Please keep in touch, send us a comment or an email.

Love you!

Angie

Yeah Yellowstone!

So, I went and had Kaelyn's labs drawn last Sunday and we heard results on Monday. Things looked pretty good. I think maybe she just had a virus, somethings been going around. So, Monday morning we drove up to Yellowstone for the Young family reunion! It was so much fun. We really had an amazing time. It was so good to see my family together for something happy and fun, usually we only all get together for a funeral, sad huh! But thanks to my moms planning we really had an amazing trip. The only thing that would have made it better was if Wade could have come too. He, unfortunately, could not get the time off of work. Kaelyn is still talking about the geysers and mudpots! She was pretending last night that our basement was where Old Faithful was. It was really funny! I really want to post some pictures, but I cannot find my cable to connect my camera to the computer...so, I will have to figure out another way to get the photos onto the laptop...

Well, Jacob is going to start swimming lessons this week. He is really excited. And then his birthday is on the 21st (I can't believe he turning 7!). He starts the second grade on the 22nd. Crazy! This summer has gone so fast!

I am working on getting Kaelyn into a preschool that offers speech therapy in their curriculum. Hopefully she will qualify. I think she will with her hearing loss. I think she will start the beginning of September. She is really excited. She loved preschool last year.

Here is one last amazing fact. Kaelyn has gone two whole months without an inpatient stay at the hospital! I can't believe it! It really has been a good summer...

Love to all,

Angie