Sludge Ball gone!!

Kaelyn had a cholangiogram and tube change last thursday and they removed the sludge ball! It was so exciting to hear that! The IR Doc came in after surgery and told me they took it out and he was ecstatic! I love it when the docs come in excited, that means something good has happened! He also said that her bile ducts look great. I am really excited about that.

They broke up the sludge ball in to two pieces and they got two pieces out, but Kaelyn is having white stools again with some burning bowel movements. That usually means that her tube is plugged. So I am wondering if maybe some debris was left over and has plugged up the tube. Bahhhh....oh well, at least the major obstacle is out. If we have to do a few more frequent tube changes so be it. I am just thankful and hoping that this will mean fewer infections for the sweety.

Well, the kids are on spring break this week, so we should have some fun. We might go to the zoo sometime as long as we can keep Kaelyn out of the hospital (knock on wood!).

Love you all!

Angie

Hearing Aids

Kaelyn had her 3 month oncology visit last week. Everything looks great. Her oncologist actually used the word remission in our conversation! Isn't that great! Kaelyn is in remission! She said the longer we go without any recurrence or elevation in her AFP the better chance she has. It was a very positive visit.

She also had an audiology exam to test her hearing. She still has moderate to severe high frequency hearing loss. So, she gets to have hearing aids. We started to go down this path after her first transplant, but then she had the recurrence in her lungs so we decided to wait on the hearing aids. Now that she is doing so well I think it is time to introduce them to her. With high frequency loss you cannot hear the softer consonants like sh, h, th, s, f sounds. After her hearing test I started to really listen to the way that she talks and pronounces her words. And she does not say these sounds, she substitutes t and d sounds for the soft consonants. So I think in the long run she will benefit from the hearing aids greatly. It is going to be a battle, I think, though at first to have her keep them in. Luckily we have a friend who wears hearing aids and she has been willing to show Kaelyn how they work and help me understand what life is like with hearing loss. Kaelyn also adores her, so that helps a lot! (Thanks Naiah!) One fun thing is that the ear molds come in lots of different colors and Kaelyn wants pink swirly ones with sparkles...of course!

So add one more change to our ever changing life.

Love,

Angie

AFP

Kaelyn had an AFP drawn on Thursday, <.08!!! Hurray! I was so happy. It has been 3 months since her last level was drawn and, needless to say, I was a little nervous. This was the first time we've waited so long to check up on her AFP. I am so happy that it is still so low! What a relief. I think no matter when we draw that level I will be nervous, but atleast we can breath for another 3 months, cancer free!

She is still inpatient, hoping to go home tomorrow. I got to spend the night at home last night with Jacob. It was very refreshing. Jacob is doing well...I just love that boy! He is such a sweetheart.

Angie

Positive blood cultures (again...)

Well, on Wednesday night (night before schedule tube change) Kaelyn came down with chills and fevers...off to the hospital ER we go. Once again she has positive blood cultures! It just comes on so fast. She was playing and dancing one minute and chilling and fevering the next. She did have her cholangiogram and tube change on Thursday as planed and everything went well. The docs say that her bile ducts look great and the narrowing is getting better, it's more elastic than solid, which is good. One thing that they noticed that may be causing all of these infections is a sludge ball in one of the bile ducts. It looks almost like a gall stone. The IR Doc tried to suction it out, but it didn't budge. So, the next tube change they are going to try and dissolve it a little with some special bile thinner stuff. Hopefully that will loosen it enough to were it can be suctioned out.

We are still inpatient and will probably remain such until Monday. Her cultures have come back positive two days in a row. Hopefully todays will stay negative. The docs need to have two consecutive negative cultures in order to send us home.

Love,

Angie

Donation button and badge...

So, Kaelyn is doing much better. But unfortunately Jacob caught the bug. He is doing better today, but the weekend was pretty much miserable. Oh well....can't be healthy all of the time! Luckily I think we are over it, (crossing my fingers!).

I wanted to explain the new sections on the right hand side of our blog. First I have placed a donation button for Kaelyn's medical fund. Please do not feel obligated to donate. A lot of people ask me what they can do for us and I don't know what to say, so I decided to place this donation section on the website for the people who want to help but do not know how. We have incurred debt with Kaelyn's treatment and care and would greatly appreciate anything you wish to donate. Everything donated will go towards Kaelyn's medical care. But, once again, please don't feel obligated. Thank you for all that you have done for our special girl and our family.

The second new thing I have placed on the right side bar is a donation badge for cancer research, organ donation and Seattle Children's Hospital. I feel like I needed to be a part of this some how and felt that placing this option on our website would help us all feel like we are doing something to further these wonderful life saving causes. Especially after reading about the federal budget cuts for cancer research. Once again, do not feel obligated, just know that if you feel like donating to a worthy cause the ones I have placed here are a great option. Options that have saved Kaelyn's life more than once.

Well, I will try and update tomorrow after Kaelyn's clinic appointment. Hopefully all is well. Thanks again for keeping up with our family and support.

Love to all,

Angie