List upgrade!!!

Kaelyn's docs applied for an upgrade on Kaelyn's position on the Transplant list and it was accepted! Her PELD (Pediatric End Liver Disease) score is now a 24. That is a bump from a 2. This is really great news! We are hoping to get a call soon for her transplant. There are only about 15 people total, adults and children, on the list at this score compared to the 200 or so from when she was a 2.

So, keep those fingers crossed and prayers going for our little angel. Hopefully, she will get over this mountain on her journey soon with a new, functioning liver.

Love,

Angie

Miraculous Utah Trip

Well, with all of my complaining in the last post you would have thought we were never going to get to go on vacation. We are home now, after a wonderful trip to Utah to see mine and Wade's family. Kaelyn did amazingly well, no trips to the hospital for the entire 10 days! It is truly a miracle considering how the week before went!

We had a great time. The kids got to enjoy a classic Tooele, UT 4th of July complete with the parade full of army vehicles and fire trucks, the Rodeo (where Jacob did awesome riding a sheep for the first time!), and fireworks! We even got to watch a thunderstorm full of flash flood warnings! It was really great. The kids and Wade were able to go fishing with my dad and actually caught four fish! Jacob loved that! It was wonderful getting to see all of the family. My grandmother unfortunately took Kaelyn's place in the hospital, but seems to be doing a little better today.

It was so great to have a change in pace and get away. I feel much more able to jump back into the battle.

Love to all!

Angie

Anyone for a tube change?

Biliary drains are really annoying, if anyone is wondering. They clog up with the stickiest gunk, bile, and then give Kaelyn all sorts of woes. We went in last Friday for a tube change, and by Sunday it was already clogged. So I think we will be going in again today or tomorrow whenever they can get us in. The IR Doc that usually performs her exchanges is out on vacation for two weeks and there is no one else at Children's who does it. Is that crazy or what! So they have to try and schedule one of the University of Washington's IR docs to come over. So that means we will probably have to be inpatient and just wait until he has an opening. Can you tell I am feeling a little jaded today, sorry. I think the reason I am crazy today is that we are trying to go to Utah to visit my family, including my grandmother who was just diagnosed with cancer, in a few days and it is feeling almost impossible to get Kaelyn to a place that she could enjoy the trip and not have to spend it all at Primary Children's in Salt Lake City. So please pray for Kaelyn that her biliary drain can remain stable for atleast a week.

I will let you all know how the next week plays out.

Love,

Angie

Yet another infection....

Kaelyn and I have just come home from a two week stay at Children's. She had another 104 degree fever and we rushed her to the ER. She was admitted and her blood cultures came back positive with Citribacter bacteremia. In Laman's terms, her PICC line was infected with a really nasty bacteria. This caused her to have whats called ascites, or excessive abdominal fluid. The citribacter causes your blood vessels to be "leaky", so all of the normal fluid that is in you blood leaks out of the vessels into your body. The poor thing gained 6 pounds in water weight in only 2 days. She was so uncomfortable, it was awful. We gave her Lasix (diuretic) and Albumin (the portion of the blood that acts as a sponge to keep the water within the vessels). It took about 4 more days to get off all of the excess fluid and for her to feel better. We also had to take out her PICC line. So, she had to endure multiple IV's in order to get her IV antibiotics. Finally after about a week and a half on antibiotics the surgeons decided to put in a new central catheter line called a Broviac. It is basically like her old port, except it is external like the PICC line. It should last longer than the PICC and hopefully we can avoid infections like the ones she has had over the past few months. So, with the placement of this new line we were able to come home. Now I can administer the IV antibiotics at home. It is so much better to be home. Kaelyn loves it! She ran around the whole house just singing and dancing. She also could not wait to be home "and be a family" she said! She also said on the way out of the hospital "Mom, we're outta here!".

So, life should get back to the Perry form of "normal".

Love,
Angie

Kaelyn is still having quite a bit of pain from her enlarged liver and spleen. They seem to be taking up all of her abdominal space. This means her stomach and bottom portion of her lungs are being squished. She had a CT scan a few weeks ago and they noticed that one of the three nodules that presented themselves in the previous scan was enlarged. The other two were smaller or gone all together. The docs are thinking that this is probably another lymph node that is just enlarged from all of the infections she is still recovering from. So, instead of doing a biopsy of the nodule we are going to wait a month and rescan her to see if it had reduced in size any. She also is able to stay listed. If a offer for a liver comes in before we are able to rescan her we will just have her scanned right before her transplant to insure that the nodule has reduced.

This is all very relieving for us, we did not want to put her through another biopsy so close to the last one. The docs also mentioned that her name has come up a couple of times when an offer has come in and they think that she should not have to wait too long. I am not sure what that means in surgeon talk, but I am guessing that it will be a couple more months.

I also rescheduled our trip to Palo Alto for the 22nd of June. That is the soonest that they could get her in. Maybe a liver will come in here before then and we will not have to worry about the trip. Wouldn't that be nice?!

Well, we are doing all we can to keep Kaelyn comfortable while we wait. She still has her sunny disposition and loving spirit. I don't think anything could take that from her. She is so strong.

Jacob only has three weeks left of school. I can't believe it! He will soon be a 1st grader. Time sure has a crazy way of slipping out of view! He is really growing up and such a kind and caring kid. I couldn't ask for better.

Love you all!

Angie