kjkblog

Saturday, August 9, 2014 - 20:55
Her ANC is over 3000 today...meaning last night of the shot..meaning all the bruises on her arms can start to heal. Since this is an artificial boost, they expect it to drop down, but not so much to cause any problems. The mucositis continues to get better. She is still on a large dose of Dilaudid through a PCA, but they expect this to improve over the next week. She is starting to drink again and eat a little like jello. She says, "Today I am so thankful for how on course this transplant has...
Friday, August 8, 2014 - 13:47
Her AbsoluteNeutrophilCount is just over 1000. We need three days of this to quit the nightly shots. Pray her platelets hold and she starts making her own because the allergic reaction to these is yucky: swelling and severe burning itching rash over all her body and that is with premedication. She has been a little nauseous over the last 2 days. She wants to eat, but cannot handle anything other than liquids. Everything is going as planned...I said like textbook....then...
Thursday, August 7, 2014 - 10:44
She is starting to get better from the mucositis...pain level down to a 6 now. She can take in some water and attempting some food. She looks good and keeps pushing herself. She takes walks and manages some dance moves and stretches. We played Bingo last night...yah, we go for the fabulous prizes: Snakes and Ladders, Princesses Flashlight/Pen, and photo book.
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Wednesday, August 6, 2014 - 12:45
She has started to engraph. This is the first part of what is supposed to happen. This will bring another set of issues, but through all of them we continue to hope and pray that nothing unusual or threatening occurs. She is holding on very well. There isn't anything to do except persevere. She know this and is hanging on. There is a storm going on in her body,
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Tuesday, August 5, 2014 - 12:07
I will be glad when this week is over or at least the mucositis is over. Tough watching her suffer all day, and Zach watching all night. She was tanked with pain medicine yesterday which was scary to watch her go purple when she slept. Her oxygen dropped really low and was put on oxygen when sleeping. They reduced the amount but pain level is high. We are still trying to find the happy medium. This is still the normal, and nothing new has cropped up. They are being vigilant. Her BP and other...
Sunday, August 3, 2014 - 09:55
The mucositis is very painful. We were told to expect this and the next 2 weeks can be awful. TPN(nutrition through PICC line) and PCA(patient pushes button for pain med) will be started. She needs constant drugs through lines including platelets. She reacted to them with mouth swelling. Will try again with benadryl on board. God is in control, so we pray about everything and worry about nothing. Pray for her pain and perseverance. She cannot take meds by mouth, so all of her heart medication...
Friday, August 1, 2014 - 15:22
Well folks, she is neutropenic. This is what is supposed to happen. We were hoping to be spared the nasty side of effects of it all, but she has been in severe pain and cannot swallow. She just had a dose of Dilaudid that helped with the pain so she could eat, and just threw it all up. She is pretty miserable. Please keep praying that these nasty side effects will go away. This is also the time that dormant viral, bacterial and fungal infections can rear up. Pray against these in the Name...
Wednesday, July 30, 2014 - 09:21
She was experiencing gut pain most of the day until she finally got an extra dose of nausea medication which puts her to sleep. When she woke up, she felt better. She was able to shave Zach's head and play some games. The fever hasn't returned, so they think it was the result of the Cytoxin messing with things. All of her cultures have been negative, and her lungs look stable. Her sinuses are worse, so she will see ENT for cultures to make sure they aren't missing any bacterial or fungal...
Tuesday, July 29, 2014 - 11:53
Yesterday went well. She received large doses of fluid to help the Cytoxin go through her and several other drugs that go before and after it. She spiked a fever this morning which causes quite a clatter. They will be running a few scans to look at sinuses and lungs. They are being careful with all symptoms...could be just the Cytoxin messing with the things it's suppose to mess with. More nausea today also. Really still doing great. Her counts are expected to zero-out within two days.
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Saturday, July 26, 2014 - 19:06
I walked into her room this morning to an awake girl who tried to eat breakfast. What an awesome start! We loved our family visiting today with smiles and hugs and games. Karly was amused all day. She hasn't even had a nap. We played Apples to Apples. Tyler was discharged. Caught up on stories.
Once the pictures started, it was a hoot. Mr. Magic Hips appeared.
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