kjkblog

Saturday, July 26, 2014 - 18:43
Today was very busy to say the least. Tyler was suppose to be taken to the OR at 7:30. When we arrived, there was a piece of equipment that wasn't ready. They finally took him back at 10:00am.
Pre-OP

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Saturday, July 26, 2014 - 16:19
Tyler had a busy day with appointments then got admitted and settled in. He was a trooper. The charge nurse couldn't get an IV in him so after 2 tries, she got an ICU nurse to start one. He had fluids run all night. Karly had her total body radiation that afternoon. It gave her a suntan, but it really zonked her. She slept pretty much 24 hrs with an occasional try for food and to take meds. She didn't feel well...nauseous, chills, body aches, and headache.

I was so thankful to have...
Saturday, July 26, 2014 - 16:10
 Day-3 we decided to give her a shorter haircut in preparation for the upcoming hair loss. We made an appointment to pick out a wig for the afternoon. Karly wanted Zach to give it a try. All we had were hospital scissors, but we made...
Wednesday, July 23, 2014 - 11:33
Karly has been doing very well this week. This is what I expected. She is trying very hard to be as active as she can. She is eating less and becoming more tired. She fears the suffering of what the next several weeks will bring, being stuck in bed because she is weak and miserable, not eating because of the mucositis, infections of all types(fungal, viral, and bacterial), her kidneys or heart plummeting because of the nasty drugs, SO we come against all those things in the name of Jesus. May...
Saturday, July 19, 2014 - 17:40
Today started the first 2 chemo drugs. Besides being sleepy, she is doing well. Prayer points are to keep fluid levels balanced while urinating out the chemo, keep eating, her left arm and hand are swollen(don't know if it is PICC line related or Palifermin related) but hoping no matter what it just goes away, nursing staff be on the ball(2 in a row were not good at their job and couldn't communicate with good English), and Drs. be vigilant with the numbers. I went out today to get things to...
Saturday, July 12, 2014 - 11:29
After Karly's week of testing, we were able to fly into Indianapolis July 4, get picked up, and drive 3 hrs. to visit some close family friends for the holiday weekend. What a fabulous time that was! Lake activities, games, awesome conversations, and relaxation. Tracy and Karly went to NIH on July 8 thinking she would sign the papers, but they weren't ready yet. July 9 was a crazy hard day for Karly because of all the last minute multitude of other tests and clinics she had to get to. She...
Thursday, June 5, 2014 - 16:28
I had thought based on discussions with Karly's doctor that the transplant wouldn't happen this summer if it hadn't happened by May. Based on that information, we tentatively decided to travel to California for a friend's wedding, visit some very dear family friends, and see some amazing sites. We didn't make any hard set plans. We are used to not depending on anything more than a day away. Sure enough, our plans have been changed. We could choose to wait on the transplant, but looking at the...
Wednesday, May 21, 2014 - 05:28
We returned home from NIH last Tuesday with an uneventful trip. YEAH! Other than her potassium being low, things were looking good. However, she did leave them with a sputum sample, because she had been goopy. She is growing things that need treated. We will be starting with an antibiotic nebulizer twice a day and see how this goes. We hope that IV antibiotics will not be necessary. She is not feeling well and sleeping bunches. We see her heart doctor on Friday to assess things again. One of...
Thursday, April 17, 2014 - 11:38
We saw her Advanced Heart Failure doctor on April 4.  The doctor said that when she starts to think about adjusting Karly's medications, then you know you are doing well. It was decided to switch from 18 blood pressure pills a day to 1 pill once a day if her creatinine level was below 2 on Monday, April 7. We were looking forward to this.

Around 3:00am Monday morning, Karly woke up with her face and hands swollen and itching body wide. She took some Benadryl and was able to...
Monday, March 31, 2014 - 14:23
I just counted how many days Karly was in the hospital since Feb. 28...a total of 21 days 15 which were in the ICU. This wasn't much fun from anyone's perspective especially a 19 yr. old. However, Karly was so happy to be able to participate in the Campus Crusade Beach Evangelism. This brings a smile to her face amidst a long, tedious fight for survival. Whenever you get a chance, please ask.

Karly was presented in a large cardiology meeting on March 20. Although there remains to be...

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