On Saturday night Kaelyn spiked a fever, so back in we went. She topped out at 104 degrees. It was no fun. She is feeling much better now after starting IV antibiotics. Right now she is having her drained changed and a cholangiogram. It was a very long day with a grumpy, hungry girl - but she should feel much better with a new, clean drain. She does have positive blood cultures so we will be inpatient for atleast a couple of days.
Angie
Monday, April 23, 2007
Friday, April 20, 2007
In and out, in and out....
Last Friday around 11:30 pm Kaelyn spiked another fever. So into the hospital we went. Of course not much gets done over the weekend at the hospital so we waited until monday. All of her cultures were negative so they let us go home after two days of antibiotics with a cholangiogram and tube change scheduled for April 26th. Well, last night (Thursday) Kaelyn started to not look like she felt very well and acting very cranky. This is all usually a sign that things are heading for a fever. So far so good though...no fever through the night. But I am still leery. I guess we just wait it out. But we are heading for another weekend...that usually means time in the ER and two days spent without any action done....blah. Oh well...
On a different note, we are painting the trim of our house today...fun stuff! It really needs it. We scraped paint and taped the trim yesterday...not so fun stuff. But now it is already to look beautiful! So hopefully we can stay out of the hospital long enough to get this done.
Last wednesday we took Kaelyn in for her ENT appointment. He looked in her ears and of course couldn't see anything because of all of the wax. So he cleaned her ears, which was very tramatic, and everything looks good. She is cleared to get her molds done for her hearing aids. That appointment is scheduled for May 2nd. Then she will be fitted for the hearing aids the end of May. That will be very interesting. She hates things in her ears!
Right now everything is calm in the Perry house...whew...
Love,
Angie
On a different note, we are painting the trim of our house today...fun stuff! It really needs it. We scraped paint and taped the trim yesterday...not so fun stuff. But now it is already to look beautiful! So hopefully we can stay out of the hospital long enough to get this done.
Last wednesday we took Kaelyn in for her ENT appointment. He looked in her ears and of course couldn't see anything because of all of the wax. So he cleaned her ears, which was very tramatic, and everything looks good. She is cleared to get her molds done for her hearing aids. That appointment is scheduled for May 2nd. Then she will be fitted for the hearing aids the end of May. That will be very interesting. She hates things in her ears!
Right now everything is calm in the Perry house...whew...
Love,
Angie
Tuesday, April 03, 2007
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
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
Saturday, March 17, 2007
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
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
Sunday, March 11, 2007
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
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
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