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

Port-a-cath is gone...3rd Birthday!

A couple of weeks ago Kaelyn started having really high fevers, 104 degrees. I took her in to the hospital and they ran some blood cultures. The result was that her port-a-cath was infected with staff and strep bacteria. It was not responding well to the antibiotics so in she went to the OR to have her port removed. This is not something that we wanted, but it had to go. This was the only way to clear up the infection. The surgeon said that they removed about 8 cc's of puss, which is almost two teaspoons full. They were pretty surprised that it was so infected. Because of this they could not close her wound. We need all of that infection to come out. We stayed in the hospital for about 8 days and went home with a PICC line (a peripherally inserted central catheter) in her arm so we could continue the IV antibiotics at home for another 10 days. She also came home with an open would were her port was removed. We have to change the dressing and repack it once a day with antimicrobial packing. It is starting to heal and look better. She still is not feeling well though. She is complaining of pain constantly. So I have a call into the docs to see if we can help resolve or atleast find out what is going on. She needs some relief...

On a more happy note! Kaelyn had her 3rd birthday on Thursday! It was very exciting. She had a barbie princess cake and all of her grandparents and many of her other family here! She was so excited about the scooter she got that she did not want to come back inside to blow our her candles and have cake and ice cream! It was so cute!

Love to all,

Angie

Finally listed!

On Monday of this week Kaelyn was finally re-listed for her second liver transplant. Hooray! It is so funny to look at the difference in emotions from the first time she was listed to this second time. The first time was so stressful and frightening. This time I am so relieved and happy. Anxiety is always a part of waiting for the day to come, but it is less this time. I know what to expect and how to handle the recovery and medicines.

Wade and I have also decided to dual list her in California. This will hopefully decrease her wait time. Kaelyn and I are heading to Palo Alto, CA next Wednesday and will stay until Friday. We will meet with the whole transplant team there at Lucille Packard Children's Hospital and get her listed there also within the next week or so.

I do hope that her transplant happens close to home, but if an organ becomes available in Palo Alto than we are there in a heartbeat.

Well, love to all.

Angie

Wonderful, fantastic news!

No Cancer!!!!! Kaelyn's biopsy went well, the pathology of the nodule removed was that it was not hepatoblastoma. It was a lymph node that was enlarged probably due to the RSV that she had last month. It also was not in the lung, it was located on her diaprahm. That meant that she did not need a chest tube after surgery, so her recovery time was much quicker. We were in the hospital for 8 days though. They placed a second bile drain which has helped her immensely!

So, wonderful news! We are so very happy after our two weeks of extreme worry. She is doing very well right now. She is home and happy! She most likely will be listed for her retransplant on Monday of next week. More good news!

Love to all,

Angie